From MaGerks to I Dos

Hospitalizations in 2011: the Numbers

2012-01-27T11:07:00.003-05:00

16 separate admissions.

132 days.

116 nights.

November was the only month we did not spend a single night in the hospital (only because she was sick and we had to cancel the scheduled admission).

These numbers exclude checkups and days where we just went in for labs. These numbers are true admissions, where we spent those days and nights in a room.

They say that the first year after transplant is hard. They were not kidding. It was brutal. Honestly, based on how I feel about 2011, and the many, many memories we have of being in the hospital, I was surprised the numbers were that low. Most of those days were between January and June. Then, from June through December, the admissions were about once per month, with the stays ranging from 1-3 nights.

You might be thinking how crazy I must be to actually have added up those numbers. But I do well knowing the numbers so that I can remind myself just how far we have come. I never want to take for granted the progress we have made. And even though those days in the hospital were hard, and terrible, and painful, and truly exhausting, both mentally and physically, they led us to where we are now. At home, with our beautiful, feisty, challenging, loving little girl.

So to all those families going through that first year of hell, or to those who are waiting for their child's perfect liver, I wanted to tell you that we have been there. It is daunting to see those numbers. Not every transplant patient's journey will be like ours. But I am here to say that those horrific days in the hospital are worth it! Every single one of them.

Fudge fail

2012-01-26T12:05:00.001-05:00

I made my mom's recipe for fudge recently to take to the hospital for Luca's team. We randomly surprise them with something little - normally horribly bad-for-you food - just as a little thank you. I realized partly into cooking the fudge that I had added the chocolate too soon into the base. I knew right away that this likely would mess up the recipe. But poured it into containers anyways and hoped for the best. I set it outside to set and before leaving for the hospital the next morning I saw this:

And this - notice the mark on the wood.

Clearly, the animal did not like the fudge.

P.S. - I did not take that batch to the hospital. The sugar did not dissolve properly because of me messing up the order. I made a new batch, that was made correctly, and not disturbed by anything outside. And it tasted delicious.

The weather recently

2012-01-25T14:02:00.000-05:00

It has been a very mild winter here just outside of D.C. We have had some very cold weather, but it has yet to produce any measurable amount of snow. Saturday, we woke up to enough snow that it covered the ground (but not enough that the grass blades were completely covered). It was pretty and peaceful and quiet. I bundled Luca up and met Ian outside as he came home from a run. She was not too thrilled with wearing a hat, but she loved looking around at all the white.

Luca and Tessa

2012-01-24T15:23:00.000-05:00

We have had Tessa full-time back with us for a couple months now. We were a bit nervous as to how she would react to Luca now she she is on the move, and equally apprehensive as to how Luca would react to Tessa.

Bottom line is that Tessa is awesome with her. She is gentle and sweet and follows her around. She does not react if her fur is pulled or even if Luca purposely sits on her. Luca is pretty obsessed with Tessa. She bends down to give Tessa open-mouth kisses (which we normally interrupt because, um, ew!). She squeals when we go for walks with Tessa. We are working with her on not pulling Tessa's hair. Tessa likes mealtime because it means she gets fed treats by Luca.

They coexist quite well together and sometimes, even seem like the best of buds. From Tessa's rocky beginning, I am pretty proud of how well she has adapted to being a big sister. Picture 1 - Tessa following Luca through the house. Picture 2 - Tessa bringing Luca her ball for her to throw. Picture 3 - Tessa anxiously waiting for Luca to be put down on the ground so she can lick the food off her face.

Worth the read

2012-01-20T12:17:00.000-05:00

Two recent bloggers wrote - and each of their posts touched me so deeply, I feel inclined to share their pieces with you.

http://myunstilllife.blogspot.com/2012/01/transplant-ongoing-journey.html - This mama is a fellow liver transplant mama from the same hospital we go to. She wrote about what life is like post-transplant for our kids, and us. And she wrote it out so beautifully.

http://dearbabyblog.com/post/16117907502/ive-seen-glennon-meltons-dont-carpe-diem - Melissa writes about how she copes with stressful moments while raising her two kids. She wrote is so well that it somehow is sticking with me and I have been repeating some of her phrases when Luca has been cranky recently. And, I printed out a few of my favorite lines from it, and am going to hang it as a reminder every single day.

The latest in photos

2012-01-19T16:46:00.000-05:00

Picture story time - all about Luca.

Remember I called Luca the cling-monster? Well I snapped photos of her as she chased me down screaming. This was one of those photos. (And look at the size of those chompers that came in recently!)

Luca is obsessed with bagels - she does not exactly eat them , but loves chewing on them. Here she is in action.

A smile on the run.

Another recent interest - she likes trying on our shoes.

And yet another new interest - carrying around a clean diaper. You can find her throughout the day carrying around a diaper, sitting with a diaper, etc. Weird kid.

One of her Christmas presents was this home. She loves opening up this window to see us.

We had a gorgeous day last week so I took her to the playground, where she face planted into the mud. She did not cry, and I took her back to the car to clean off her face, but not before snapping a photo!

Exploring.

This kid loves the swing! She had no fear whatsoever, and the higher we pushed her, the more she squealed with delight.

The end of pumping

2012-01-15T22:27:00.000-05:00

I know what you all will think when you hear this (or maybe not all of you). Last night was the last time I pumped. And now you are thinking that I must be crazy for having pumped for 17 months. Maybe so.

I realized awhile ago, probably a couple months ago, that logically it made sense for me to stop pumping. My body was barely producing anything, and while I was only pumping twice per day, it still was taking up time during my day to not only pump, but clean all of my pumping supplies. Currently, we are using milk from the beginning of September so I know she will still get some each day for the next couple months. Emotionally I have been in a bad place for a couple months (this requires an entire other post), and I knew that I should drop the pumping, as to eliminate something from my plate.

But for some reason, while it made sense in my head to stop, my heart was having a hard time catching up. I found myself hesitant to stop pumping for several reasons. It is so good for any baby, and even better for an immuno-suppressed child to get some extra help through breastmilk. It also guaranteed me two times per day of uninterrupted time to myself.

Then, I had an epiphany. While that reasoning was all true, I was not addressing the emotional reasons why I might be hanging onto pumping longer than practical. I feel like Luca's health situation robbed us of so much. I breastfed her for only two days. I was having this hang-up that somehow, by pumping and giving her breastmilk, that while it was not a bonding experience for her, it still was for me. I was providing nutrition for her, whether she knew it or not. I feel sad that I was not able to breastfeed her. It was always part of my plan, and that plan was drastically altered, and I am having trouble letting go of that original plan. I think that sadness of letting go of all these plans, including breastfeeding, is something I am just starting to address.

Also, and this is a big one, is that we do not know if we will have anymore kids. And if we are meant to only have Luca, this is my only time to have that experience.

I woke up this morning and started getting my pumping supplies ready. Then, I took a few minutes to think about things. The fact is, with all of those emotional reasons for continuing to pump not going away anytime soon (if ever), I figured I needed to just pull the trigger, suck it up, and stop. I am still going to be sad that I was not able to breastfeed Luca like I had planned to. I will be sad if I never get to experience having another baby. But continuing to pump is not going to take away the sadness of any of those things. It will not change what has happened.

It was time. Today, I felt sad about it. But with stopping came some relief, some freedom, and clarity. Now, I can focus on the emotional aspect of things. I can see now the reasons why I was having trouble letting go. It was all about letting go of that dream I had of breastfeeding. But I can sit back and know that while I did not breastfeed for as long as I had hoped, Luca has reaped rewards from my 17 months of pumping.

I can say one thing - I am excited to start shopping for some new regular bras, to go to sleep at the same time as Ian tonight (instead of sitting up pumping), and to pack away my pumping bag and gear. I hope someday I get to pull it all back out again. But if not, I certainly have gotten my money's worth!

Merry Christmas!

2011-12-24T09:28:00.001-05:00

We sent out our Christmas cards and I could not be more thrilled with how they turned out. I chose one that allowed for a lot of pictures, and also allowed for us to write a tiny blurb of our own. And I wanted one that represented our feelings towards this holiday season. We feel blessed blessed and are rejoicing in the spirit of this season. And, we will take every opportunity to smile and laugh, to be carefree, as we cherish our first Christmas as home with our little lady.

Happy holidays all!

The cling-monster

2011-12-23T17:18:00.000-05:00

This has officially become my nickname for L over the past several weeks. She feels the need to be touching me at all times. And my goodness, the second I put her down (as in, not carry her on my hip), she lets me know that that, is simply not acceptable.

Anybody go through this? At first I figured it had something to do with teething. And while she still does have some teeth coming in, I thought I would check in with some others just to make sure I might not be missing something.

I am left wondering, is it the teeth, something more serious, or do I need to suck it up and let her cry a bit because she is simply spoiled? (I do, in fact, let her cry sometimes because this mama must get laundry/dishes/dinner done. And every time, I feel my anxiety rise as she screams more and more, all while hanging onto my leg.)

For now, the cling monster is still present.

A stressful today

2011-12-22T20:17:00.000-05:00

Tonight, as I took a bite of pork dumplings that I had just cooked because I didn't have time to make a real dinner, I sighed as I looked down and saw Tessa staring at me expectantly. Ian was putting Luca to bed, and while I wished I could just sit and have a few minutes to eat by myself, my pup had not been walked since Ian left for work this morning.

It was a very long day. I had to do a run to costco to get a few things, but it happens to be about a 35 minute drive each way. That does not seem like a bad thing, until you factor in a child who is unhappy in the car these days because it straps her down. I continually hand individual toys back to her until she tires of it, then is ready for a new one. I keep a stash of items in the car specifically for this little game, but she will easily make it through the stash within 15 minutes, then becomes restless and just wants out of the carseat. It makes car rides full of anxiety for me, and tests my patience every single day. Costco was full of maniac last-minute shoppers. I patiently manuevered my way through the store, getting my normal items (diapers, wipes, keurig coffee, trash bags, etc.). I even kept my patience as I held a screaming Luca in my arms while trying to check-out.

Then, I dropped off the cold items back at the house, picked up my goddaughter, and headed to stop #2 - the mall. I have mentioned before that I hate malls. I get overwhelmed and hot and feel the need to escape almost as soon as I get to the parking lot. I will spare you the details of this trip but consider it safe to say that it was a lot worse for my anxiety being that we are 3 days before Christmas and extremely crowded. And with Luca there, I was so worried about the germs surrounding her.

Finally, we made it to stop #3 - the liquor store for a couple last minute items.

By the time I made it home, I had been gone on errands for 6 hours. Luca had reached her breaking point. I was in the same boat.

Then I got home, and Tessa was in my face, wanting attention. I had no more patience. But I put on my raincoat and boots, and headed out into the rain to walk her. It was cool, but not too cold. And the rain felt good. I pulled the hood back from my face and let the rain hit my skin. I listened around me and heard sirens in the distance. Then once those faded, I heard the pitter-patter as the rain hit the pavement. I heard Tessa's collar chiming as she walked through the grass. I closed my eyes and took some deep breaths and let the rain wash away the stress of the day.

I took my time walking her, in no rush to go back inside. And as I walked, I purposely reminded myself of all I have to be grateful for. And I thanked God for all of my blessings, even on a demanding day. I walked back inside, dried Tessa's paws, hung up my coat, sat back down, took a bite of the remaining dumplings, and took a big sip of wine, feeling much better afterall.

Not a wordless Wednesday

2011-12-21T10:03:00.000-05:00

Lots of random tidbits today.

Here's a video of Luca walking. She started walking unassisted a couple weeks ago but it was never for very far, and I was always too closeby her (in case she fell) to take a video of it. Now that she is walking with a bit more confidence, and I, too, have more confidence in her walking, I finally captured it.

I made Saltine Toffee Cookies and was planning on packaging them up in small containers for some various people. But, seeing as I ate a lot of it, it looks like I will have to make another batch, and then quickly package it up before I eat anymore.
Ian and I dress Luca in comfortable outfits. And often, they are some crazy outfits. I often wonder what people think when they see her out in public. Half the time she looks like a hot mess. But she is comfy and happy, and I cannot keep up with the amount of laundry she goes through so it normally means that the matching pants or onesie or sweater is dirty. Oh well!
We sent about 80 Christmas cards this year. Obviously, we included some people who we are not that close with, mostly because some of these people have been amazingly generous with thoughts or prayers or tokens for Luca or us over the past year. I sent them a Christmas card with a little note saying thanks. I was not expecting anything in return. But we have received probably 20 Christmas cards back from these various people since they received our card. It was very clear after receiving about 10, that people had already sent out their cards and received ours and felt bad that they had not sent one to us, so they quickly sent one out to us. It is absolutely sweet of them, but now I feel bad that they felt bad that we had not gotten a card from them. The circle of guilt continues I guess.
A close family friend passed away this morning. It was certainly expected, but watching his family in pain is so devastating. And it always amazes me how many people die around Christmas time. I kind of like to think that people let go around this time because of the spirit and peace that this holiday brings.
We have no scheduled admissions coming up because finally, Luca is free of all drains in her bile ducts. As long as her labs stay stable, and she shows no symptoms of biliary issues, they will remove her PICC line in the next month and we will return to the hospital for labs and checkups only. To get to this place has taken a lot of hardwork, heartache, tears, prayers. And holy moly, I am so looking forward to giving my girl a bath when that PICC comes out! Thanking God for the progress.
I thought we had all of our Christmas shopping finished until we wrapped everything last night and I realized we need a few more things for people. I plan on finishing up today or tomorrow...nothing like some last minute shopping.

First transplantiversary

2011-12-14T22:16:00.000-05:00

Today, 1 year ago, I gave Ian a kiss and left him in a prep room with his dad. I hurried back upstairs to be with my baby. I was surrounded by family and friends. You could feel the anxiety in the air, as we all knew it was almost time to kiss Luca and leave her in the hands of her amazing team of doctors and nurses, and of course, God.

I played with her until I heard the words "they are ready for her." She was smiling on her way down the elevator. We all crammed in there - over a dozen of us. She had no idea what was happening in that moment to her Dada, or what was about to happen to her.

Then, I kissed my family and friends bye. They all gave Luca love. And I turned and walked away from them while holding onto her. I was taken to a space behind a curtain. There, her anesthesiologist came and went over pre-op questions. I could feel my throat constricting, like I had a huge lump there, that was growing as the minutes went by.

I held Luca tight to my chest and rocked her, her head on my shoulder. Then, the curtain opened and a nurse was standing there. She said "I know there are rules about only immediate family with the patient, but this is a special circumstance." Behind her, she had brought all of my family and friends to be with me for those last few minutes. I sat in a chair while everyone surrounded me and Luca.

Her surgeon came and talked to us. As he was talking, Luca fell peacefully asleep on me. Then, within a few minutes, they said "it's time to go." They brought a stretcher over. They brought several warm blankets. I laid Luca down gently and they covered her with warm blankets. She stayed asleep. Then, I bent down and kissed her and told her I loved her so much and that she was going to do awesome. Then I said to the team to please take good care of her. They assured me they would.

They wheeled her away and I watched until I could no longer see her sleeping body down the hallway. I turned around, and started sobbing. My family lifted me with hugs and shared tears with me. This was really happening. Both of my most precious loves were being operated on simultaneously.

We pulled ourselves together. Then, we headed up to the unit to switch our belongings over to the room where Luca would be staying post-surgery. Afterwards, we went to the surgical waiting area. We set up shop there, taking up a lot of space. We got a lot of stares, especially when the surgical nurse who gives updates to family members was giving me updates on two people.

Before we knew it (although at the time, it felt like the clock was ticking backwards), we heard that Ian had done beautifully and that they were preparing his piece of liver to go into Luca.

Then, we learned that Luca was out of surgery and everything had gone smoothly.

That was one year ago. I can hardly believe it. In some ways, like when I retell the details of that day, it feels like it just happened. But in other ways, this year has been the longest and hardest year of my life. But it has been worth it. All of the bad stuff about this year has been worth it because Luca is here. And honestly, as long as she is thriving, happy, and making improvements, that is all that matters to me.

We are spending the day cherishing our sweet girl and remembering all that we have been through to keep her here.

For most families, transplant anniversaries are bittersweet. They remember the person who lost their life and saved their loved one, while celebrating the gift their loved one received.

But for us, it is only celebration. Celebration that Ian's liver was a perfect fit for Luca. Celebration that Luca has such an awesome Dad who was willing to make such a sacrifice. Celebration that Luca is here and is happy. Celebration for the fact that we are spending more days at home than in the hospital.

Thanking God for today, and the gift of life Luca received a year ago. And looking forward to more celebrations on future December 14th's.

PS - I want to encourage you all to sign up to be organ donors. People die on a daily basis waiting for their perfect organ. Signing up on your license is great - but the best thing to do is to go to your state's organ donation website. There, you can specify which organs you wish to donate (or not donate), and by signing up there, it takes the pressure off of your family to decide what you would have wanted.

Luca and her gtube bag

2011-12-08T16:24:00.000-05:00

Since Luca has been mobile, it makes feeding times a bit hectic for us because we have to follow her closely with her feeding bag. I knew at some point she would have to transition to wearing the backpack herself. Recently, I have been putting it on her for a few minutes per day just to get her used to it. I want her to be fully adjusted and comfortable wearing it by the time she is running.

But, the size of the backpack that our medical home care company gave us is just a bit too big. This is a mini backpack, but I am going to inquire about them getting us a super-mini. If our insurance won't pay for the smaller one, I think we will just have to bite the bullet and get it ourselves, even though it will be over $80!

This video makes me both laugh and cry at the same time. Sad that she has to get used to wearing something, grateful that we have a way to give her the nutrition she needs. And yet, my heart melts and I laugh at just how adorable she looks wearing it - like she is heading off to school or something.

Shutterfly Winners Announced

2011-12-07T20:09:00.002-05:00

A whopping four people commented on my shutterfly post. I really am a boring blogger these days. Thanks to those 4 for commenting. I selected three out of the four. The winners are Ally, Lindsey, and Angie, who commented 2nd, 4th, and 1st respectively. Lindsey and Angie, please email me so I can send over your codes (and Ally, I already have your email address). My email address is frommagerkstoidos at gmail dot com. (And I promise I put the max as 4, but for some reason when I copy and paste it onto my blog, it is showing up as 100). And Doahleigh, I do not want you feeling left out so I would love to send you a holiday card this year (I know, I know, so not as exciting as 25 free cards), so email me your address!

A true blog update coming soon!

True Random Number GeneratorMin: Max: Result:2Powered by RANDOM.ORG

True Random Number GeneratorMin: Max: Result:4Powered by RANDOM.ORG

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Germs be-gone!

2011-11-27T22:37:00.000-05:00

Remember how Luca had her first cold? Well, just as everyone in the house finally kicked that cold, I got nailed.

I woke up feeling like I had been hit by a truck. I went to an urgent care place, where they told me it was just viral. It was not. Two days later, my asthma kicked up and I knew I needed to be seen again. I drove over an hour to my general practitioner (I have not had a chance to switch doctors to a nearby doctor since we moved). Turns out, I had a double ear infection, bronchitis, and a sinus infection. Start antibiotics.

Next day, Ian and Luca both start with cold symptoms.

Two days later, take Luca to pediatrician to be checked just to be sure it is just a cold. It is not. She has her first ear infection. Start antibiotics.

Next day, I am still feeling horrible and go back to my doctor. Change in meds and add 2 meds. Ian is checked out by GP at the same time - he has a sinus infection. Start antibiotics.

Six days later, take Luca back to pediatrician to make sure antibiotics did their job. They did not completely work. New antibiotic started as both ears do not look 100%.

Next day (yesterday), I go back to my doctor. Breathing and ears are better - sinuses are not 100%. Start new antibiotic.

We are seriously all drugged up in this house. I stripped our beds and washed the sheets in HOT HOT water. All of our laundry has been washed. We opened the windows to air out all of the germs. We wiped every surface possible with disinfectant. Germs be-gone already!!

Other than us taking a whole lot of meds and tea-drinking like it is our job, we have been enjoying this down-time. We had a fabulous Thanksgiving out of the hospital (last year we were in the hospital). We have so much to be grateful for on a daily basis. We spent the holiday with family and enjoyed every minute. And honestly, these colds and ear infections are normal baby sicknesses that have not required hospitalizations - and for that, I am so grateful!

And I will leave you with a picture of us from Thanksgiving.

Shutterfly Holiday Cards and a Giveaway

2011-11-10T22:02:00.000-05:00

Last year, we were so busy preparing for Luca's transplant (and the fact that Ian was going to be her donor), that I never got the chance to send out holiday cards. In fact, I do not even remember if I thought about it!

We spent her first Thanksgiving and Christmas and NYE in the hospital. This year, I hope to be home for them (even home for one of these holidays would be amazing). This year, I am determined to send some holiday cards out. We have so many people who have been with us through this crazy year, and I want to express our gratitude for having Luca home, finally.

Luca's journey has seriously given us perspective on the holiday season.

Rejoice, joy, gratitude, peace, laughter, blessed. These are all words that describe how I feel this holiday season.

I was excited to get an email from Shutterfly for this year's cards. There are so many cards to choose from, that I am having trouble narrowing it down. I want the card to express those words that I feel for this holiday season. I love the few that I have found that say "Blessed", and would include a family picture, but am wondering if this is a bit too religious to send to our friends of different faiths? Then again, I could always do a simple holiday card that does not say Christmas or any other religious holiday, but rather says a generic "Happy Holidays" type saying.

And since I am in this holiday season mode, I am starting to come up with ideas for gifts. But I do not want to share any of them because family members read this blog. But to both of our moms, who knows what you might be getting. Maybe a photo book? Maybe another gift? We do have a baby girl who would look quite cute on some of those gifts (and we know I have plenty of photos to fill a book, or 10).

What have you picked for holiday cards this year? Do you normally send cards out?

GIVEAWAY: I am trying to get some feedback on the blog. For anyone who comments on what they love reading or hearing about on my blog, or wants to just leave me a comment, I will randomly select two winners out of those comments who will receive a code for 25 free holiday cards from Shutterfly.

*I wrote this post as I am a part of Shutterfly's 2011 Holiday Card Promotion. I am receiving 50 holiday cards for free for simply writing this post, but all of my words and opinions are my own. I have not been compensated to say such things.

On having more kids

2011-11-03T11:24:00.000-04:00

One of the hardest things for me personally about Luca's medical issues (besides the actual heartache of seeing her go through so much) is that the culprit is genetic. To be a carrier for a urea cycle disorder is extremely rare. For two to end up together is even rarer. How in the world did Ian and I choose each other, both carriers of a deadly disorder? (And by the way, did you know most people have several genetic mutations? Genetic testing needs to be more affordable so that people can be tested prior to having kids - then people are at least prepared for the possibilities!)

I had always imagined having multiple kids. But personally, Ian and I decided very early on after Luca's diagnosis that we would not intentionally have kids in the natural sense. We would not ever want to put another child through what Luca has been through. (Note that many other urea cycle parents choose to take the chance. It is a 25% chance with each pregnancy that the child will be affected. We made this decision for us, and every couple must make the same decision. Please do not read my words as judgments towards others who make a different decision. This is simply what we feel most comfortable with.)

One of the things I was worried about what seeing our friends start having baby #2, #3...etc. And recently, I have had to experience exactly that. I thought that I would be upset or jealous.

But instead, I find myself so incredibly happy for them. I feel like all parents should rejoice when having more children. You do not have a genetic disorder and your child is healthy - have more! The more the better! (Okay but maybe not as many as the Duggars).

And I actually feel sad when a couple, who has a perfectly healthy child and the financial means to support more children, decides not to have anymore children.

I hope one day we have more children. We may go about it differently (we can do genetic IVF to avoid having another child with UCD, or we may adopt). I look at this face and know how in love with her I am, and think, I want to eventually have a sibling for her.

A first cold

2011-11-02T10:10:00.000-04:00

Several months ago, I thought Luca had a cold at the time she also was teething her first two chompers. Boy was I wrong.

Luca started 9 days ago with a runny nose, and sneezed about 50 times throughout the day. She officially had her first cold at 14 months old. I consider ourselves very fortunate that we made it this long without a cold.

She also was scheduled for a biliary procedure on Friday. We always are admitted into the hospital the night before her procedures for IV antibiotics (as a precaution for the procedure) and since she has to be NPO (no food or drink for 8 hours prior to procedure), she gets IV fluids overnight. I spoke with the hospital on day 2 of the cold to find out if the procedure would happen with the cold. I was told it would be a game day decision. Thursday night when we arrived, I personally thought it was not going to happen. I knew that with a cold, that putting her under sedation meds would probably not be wise.

We had a very rough night at the hospital - Luca not only did not feel well, but had the usual hospital interruptions. The combination made sleep virtually impossible. Whereas at home, she normally sleeps for about 11-13 hours at night, she got just under 3 hours.

By Friday morning when the sedation team came to see her, she sounded horrible. The procedure would have to be postponed.

We were discharged that afternoon. We had not made it out of the parking lot when I looked back and saw that she was already asleep in her carseat. Ian and I felt exhausted. We had not slept either, and both had just started with symptoms of Luca's cold.

Oh boy, our first family cold!

Luca is not normally a cuddly baby. When we got home, we let her nap for 2.5 hours and then got her up so that she would sleep well that night. We brought her out to the TV room and all she wanted to do was snuggle. She just laid in our arms, zoning out watching TV (NOTE - she does not watch much tv - but we made an exception and just let her stay with us watching TV). We both took advantage of her wanting to snuggle. She did not make it long out with us, and fell asleep quickly. Then, Ian followed suit.

I gathered up some energy to find my camera and snap a photo of my two loves asleep.

I was in heaven with my snuggly baby...no matter how tired I felt or looked (Look at those bags under my eyes...yikes! And my crazy hair from sleeping at the hospital and not showering that morn!)

Look at her little hand still holding onto her paci...

Luca is acting much better, but her cough is worse. I took her to the hospital yesterday to get checked and apparently this cold has been lingering a little too long in her chest - which creates a perfect breeding ground for bacteria to grow. We have her home on antibiotics for a minor upper respiratory infection. Let's hope we finally kick this cold!

Priorities

2011-10-27T11:23:00.000-04:00

First, hi! It has been 2.5 weeks since I last updated. I feel like I have been neglecting so much in my life. I have doctors appointments for myself that I need to arrange, calls to make, blog and caringbridge site to update, exercise to make time for.

The other day I was trying to get some stuff done online. I put Luca on the floor with some toys and quickly turned to my computer. I heard a loud bang and knew immediately she had slipped on the hardwood floors and hit her head (she was crawling - not standing when it happened). My first response was to get to her and pick her up...I knew she was fine but obviously wanted to comfort her. Then, I was mad. Mad that she couldn't sit still with toys for less than two minutes while I printed a form I needed to fill out for one of her medical appointments.

Then, I felt immediate remorse for being mad. Mad at her for what? Being a baby? Doing exactly what she should be doing at her age? I was taken aback at the anger. And knew immediately I was taking it out on the wrong person.

Really, I cannot take it out on anyone. This is our life. It is crazy and busy and not always the most organized.

I am trying to learn to accept that with an active little girl in the house, who naps very little, things have to go to the backburner. There will never be enough time in the day to get done what I need to. I actually think back to pre-Luca days and laugh. I laugh because I used to think life, at times, was super busy. How my days now mock those days! And I also laugh because I am so busy these days, but look back at the end of each day and think, "what the hell did I even accomplish today?" I used to be able to write a list of to-do's for a busy day, and tackle most of them. Now, I have a never ending list of to-do's and I get done less each day than the items I add each day. I say I am trying this acceptance thing because truly, it is tough for me to put things aside. I do not feel comfortable procrastinating or having a long to-do list. But I need to learn to accept it because this is the way things are going to be for awhile.

While I feel stressed out by having this long list hanging over my head, I remind myself how blessed I am to have this growing little girl keeping me on my feet, distracting me. She is my reminder as to what is important in life. These other things can wait. I do not want to miss any moment with this precious girl.

(I wrote today's post while wrestling Luca in my arm. As I finish this sentence, she is busy occupying herself with slobbering all over her foot.)

And to leave you with a photo. Taken by my sister over the weekend. We asked her to take some family pictures of us so I can send a holiday card this year...and Luca, she refused to smile for most of the photos, including this one.

Our days in photos

2011-10-11T12:15:00.000-04:00

We are still getting settled into this house, and are making it our home. I feel so relaxed here. We have been having some gorgeous weather and I refuse to let it go to waste, especially when we have a backyard that must be enjoyed!

Her new boots:

She is feeling more confident pulling up to stand...I left the room and came back to find her standing (still holding on):

Our backyard friends:

I do not know why...but this is a new thing for her. She likes holding the pacifier in her mouth like this:

A trip to the pumpkin patch! She liked it much better than last year!

After setting up a blanket and toys in the backyard almost everyday now, I decided to set up a blanket on our front porch to wait for Ian to get home from work.

And Luca loves bubbles...so I pulled those out to keep her occupied.

I am back to taking more photos on a regular basis...so I should have more photo updates.

Random thoughts on a Monday

2011-10-03T18:01:00.000-04:00

Since Luca began crawling, she is moving so quickly through these milestones, it really is amazing to see. Every time a family member sees her, she is doing something new.
We are getting used to living here. We love the house. It is quiet and relaxing and just what we need. What we do not need are the spiders and ants and bees that come along with living in the suburbs. That part is taking more time to get used to!
I had my 10 year high school reunion this weekend. I debated on whether to go but am really happy I did.
On our way home from the reunion, I looked down and noticed that my grandmother's ring, my most favorite piece of jewelry (except my engagement and wedding band), was no longer on my hand. I freaked out. We spent Sunday back in DC, tracing our footsteps. We looked in the garage and spoke to the garage employee (who was super kind and helpful). We spoke with the restaurant, and the manager was incredibly kind and helpful. But nothing turned up. I knew it was just a material thing, but the fact that it was my grandmother's makes it a very emotional belonging for me. I prayed to St. Anthony, but knew that it was gone. Until today. I went into our 2nd bathroom, the one I got ready in on Saturday, the one I never go in. I looked for toilet paper, and glanced up, and there was my ring, shining back at me on the counter. I flipped out. I seriously do not know how it ended up in our bathroom. But I am feeling incredibly grateful, and silly at the same time.
Luca has three teeth coming in all at once. She is, for the most part, handling it like a champ!

2011-09-29T09:22:00.000-04:00

The older Luca gets, the more aware of change she is. Tonight, she is being admitted to the hospital again (it is another scheduled admission). She has not stayed at the hospital in about 5 weeks. The more time at home we spend, the harder these admissions are for her, and us.

Last admission, she was wild when we got there, around her bedtime. So active and chatty, almost like she had had too much caffeine. We arrived around 8 and she struggled to fall asleep until about 11:30pm. I imagine we will face a likely scenario tonight. Then, she awoke every time someone came into the room. And anyone who has stayed at the hospital knows that someone comes into the room often. Probably about once per hour a nurse or tech comes in to give a med, hang her IV fluids, get vitals, etc.

While we have been home for longer stretches of time (thank God!), it makes these admissions much harder on all of us. I have been praying for longer stretches of time, and in addition, for these admissions to become much less frequent than even once per month.

Tomorrow, she has a procedure that should tell us more about where we might be heading in terms of her bile ducts. As always, you can read more on our caringbridge site, as I try to keep the medical details to a minimum on my blog.

Here's hoping for a short stay, and some good news!

The move

2011-09-25T21:37:00.000-04:00

We moved on Friday. Thursday night, we found ourselves still packing and organizing for the move at 2am, expecting family to arrive at 7:30am to help with Luca and expecting the movers to arrive around 9am.

Everything went smoothly on the day of the move, minus Luca not napping well and getting a bit cranky. The movers moved quickly and were very nice, and left our new house a little after 6.

Yesterday, we spent the day with family unpacking and getting everything organized. We still have a lot more to go, but the kitchen is about complete, and Luca's room is close as well. Everything else will fall into place in the coming days.

Today, we got cable and internet hooked up and it feels good to have access to reading blogs, facebook, and my email.

I was worried that Luca would not adjust well to being in a new house. But she has been sleeping beautifully at night and we feel so lucky about that because by the end of the day, Ian and I are exhausted. So grateful she is sleeping well so that we, too, can get some good rest.

Last night, we had our first experience with a family of deer in our backyard. I quietly lifted Luca into my arms and stepped onto the deck with her. I pointed the deer out to her. And as two baby deer came bounding across the yard, she took notice of them. Then, she promptly blew a raspberry. She seemed generally unimpressed!

Our new house is all one level, except it has three steps separating our kitchen from the family room. Our old house had two huge flights of steps. Luca took no interest in the steps at our old house. But in the two days we have lived here, she has been generally obsessed with those three steps. And she has learned to climb them with very little help. It is truly amazing to watch how quickly she is progressing since she began crawling just a couple weeks ago. She is also now pulling up on us to stand, and is loving walking while holding our hands.

We are loving things so far. I promise to post some pictures soon. I hope you all had a lovely weekend!

Our last night

2011-09-22T20:14:00.000-04:00

Tonight is our last night in this house. We have so many memories here. We hosted holidays here with family. We hosted many parties here with friends. We grew up and grew into our marriage here. It was the first house we moved into as a married couple. I started law school here.

I became pregnant here and have so many memories during that pregnancy in this house. It is where we came home to when Luca was hospitalized. And ultimately, although later than expected, we brought her home here. It was her first home.

We made great friends out of neighbors here. We are close in distance to so many friends and I am sad we will be farther away.

I am so very excited for this next house. But I am surprised by the sadness I feel at leaving this house. And I am especially surprised that I could grow attached to a rental. I guess it is because we made this rental a true home for over 3 years. It seems silly to be sad about it but it almost feels like we are letting go of some memories by leaving this place. Not logical - I know. But I do not want to lose the good and bad that has happened while we've lived here.

I am sure when all of our belongings have been moved out, and the house is empty, it will feel exactly that to be in it - empty. And when we set up our new house, and I can hear Luca's giggles and squeals and cries, and Ian next to me telling me about his day, I know I will be home again.

Here's to making so many amazing memories in our new home!

Lately

2011-09-19T20:17:00.000-04:00

I have been packing any free moment I can. But as soon as I pack, for example, a suitcase full of clothes, I turn back around to find that Luca has taken out every single piece of clothing. I sigh, and smile at the same time. More work for me - but too adorable to ignore the joy in it.

Until I get some real time to blog, here are some recent photos. Note the line across her forehead - she had a little mishap thinking she was more mobile than she is, and had a massive knot and bruise for several weeks. The line is what the mishap left behind - her doctor said it will take a couple months to completely go away. Another note - look at the curls starting to form! That one front piece ends up in the middle of her forehead about 1000 times per day.

See the curl in this next one!

This next one makes my heart melt.

Sleep

2011-09-16T13:05:00.000-04:00

The day before Luca's 1st birthday, I took her for a check-up with her regular pediatrician. We love, love, love her pediatrician. I wish we had more check-ups with him but right now she is seen so often by her specialists, and cannot receive vaccines, that we have no reason to go to him more often.

Anyways, her pediatrician has such an amazing way with first time parents. He builds up your confidence and takes plenty of time with you. He is patient and always says, "it is such a pleasure being your doctor and remember that I am always here." I always come away with a big smile.

I asked a few questions of him. While her health questions are being addressed regularly by her specialist, normal baby questions had been hanging over my head.

The big thing at the time was sleep. Luca has for the most part been a great sleeper despite all the interruptions she gets. So my question was: what does a 1-year-old sleep schedule normally look like.

He said that a non-medically complicated child, without hospital visits and such, tends to nap a couple times during the day (and that those naptimes vary, as well as how long each nap is). And at night, most kids are asleep by 8 and go until about 6am. But he said, almost all 1-year-olds are waking at least once per night for various reasons.

I was so relieved to hear this answer. Luca goes down by 8, and wakes anywhere from 6:30-7:30am for the day. (Sidenote - awhile ago she was going down slightly after 8 and was waking a ton and impossible to get to go down, but then we moved up the bedtime routine to start at 7 and she must be in her crib before 8, and voila, those issues went bye-bye. I think her window is between 7 and 8 and if we miss it, we all pay for it that night and the following day.)

She takes two naps - one at 10:30 or 11am, and the second is at 3:30 or 4. Each of those naps are about 1 hour in length. And she does wake sometimes at night. Some night she sleeps straight through. Other nights she whines and needs readjustment or new diapers, etc. Once she goes down, we are in and out of her room at least 4 times through the night. We go in at 10 to give a med and stop her feeds, 11 to give more meds and restart her feeds (and do a diaper change), 3am for new food into the feeding bag and a diaper change, and 6am to turn off her feeds for an hour and possibly another diaper change. (I realize she has a LOT of diaper changes. But she is fed continuously which means she pees and poops continuously. If we could get her on a feeding schedule instead of her being fed for 22 hours per day, I think we would have her on a better diaper changing schedule.) But probably 90% of those visits into her room, and even the diaper changes, she sleeps through it all! I always giggle when I am wiping her tush in the dark, lifting her legs, and she is fast asleep!

So that's her sleeping regimen at 1-year of age. What is your baby's sleep schedule like? Do you wish your baby would sleep more or less?

I consider ourselves blessed that she sleeps so well! (Or maybe everyone else's kids sleep better, and I am just naive!)

Crawling

2011-09-13T13:44:00.000-04:00

She has been going backwards for weeks. She has been rocking back and forth on hands and kneews for weeks. And I captured this yesterday.

Sure, she is 13 months old and people start announcing proudly that their child started crawling at 6, 7 , 8 months. But our girl has spent about 7 months in a hospital bed. Her therapists are ecstatic with how quickly she has progressed at home. She went from hating tummy time, to tolerating it, pushing up on her hands, pushing up on knees and hands, to crawling in about 10 weeks. Amazing!!

And other tricks she currently loves - giving open, slobbery kisses. Totally in love over here.

The new house

2011-09-07T11:55:00.000-04:00

Just a little preview of the outside of our new house, the awesome backyard, and the beautiful kitchen. This house looks so country from the outside, and it feels very country when you are sitting outside looking out at the huge yard. But the inside is all updated with beautiful hardwood floors. The formal living room (pictured last) even has a wood-burning stove. There are so many cute touches to this house that make it feel just so quaint. A definite change from living in downtown Baltimore!

Thursday Randomness

2011-09-01T12:13:00.000-04:00

I miss blogging! This really is an outlet for me and I need to somehow find some more time to post more often than this once-a-week nonsense. I have plenty to write about, but just have been busy. I know I know, everyone is busy. But this moving business is making me a crazy lady. Here is some Thursday randomness.

I have been wearing scrunchies lately. Because didn't you hear they are coming back in style? No? Yeah, Ian agrees with you. When he saw me wearing one he said "what is this, 1990?" Why am I wearing scrunchies? Oh because my child has been yanking hair out of my head. So I have all of this whispies around my face. She can't yank as hard when my hair gives a little bit.

I am playing fantasy football and our draft night was last night. It felt really great to go do something and not have it revolve around being a mom, Luca's health, etc. I also think this was the 3rd time I have gone and done something for myself since Luca was born. I need to work on doing this more often.

Photo books are expensive to order!

Had an awesome sandwich recently: Multi-grain bread, mayo, lettuce, smoked turkey, havarti, bacon, and smashed bbq chips. AMAZING. Try it.

Our new house

2011-08-29T14:18:00.000-04:00

As you all know, our housing search was stressful. We did not think we were that picky, but when it came time to looking for a new place to rent, we realized our situation with Luca makes us much more picky than we first thought. We finally started working with a family friend realtor. We looked at a lot of places. All the while, I was looking at craigslist for other options.

One Saturday a few weeks ago, I opened up craigslist and found a place in great location, out of our price range. But the location was awesome. And also happens to be about 2 streets away from Luca's godparents, (who are the parents to my goddaughter). These are the people we stay with when Luca is in the hospital. They are family to us. I called them right away and they drove by the house for us to take a look.

I contacted the owners. We went and saw the house the next day. We fell in love with it.

Then, we sat down and looked at our finances. We figured out major ways to cut expenses. And then we realized that by cutting those expenses, we could afford this house. So we submitted our application. And we got it!

Things that sold us - the list is long. The neighborhood is great. We are close to family. We have privacy because it is a single-family home with 1.5 acres of land (that we are not responsible for mowing all of). It is super quiet and quaint. We can have our dog there. It is all hard-woods. The house is clean!! because it was redone 3 years ago. We have a deck and a driveway. It is three bedrooms, 2 full baths, a family room and a living room. The kitchen is huge and all updated.

We get the keys on the 10th. Pictures to come.

Until we move, I am swamped with packing. But we are so very excited to start a new chapter.

The latest

2011-08-26T13:01:00.000-04:00

Hi everyone! I have been a terrible blogger. With Luca finally being mobile (she is scooting and falling everywhere), it means my days are busy, busy, busy. Here's the latest.

We have a new place to live! Finally! And we are SO excited about it. I will write a separate post about the house and the upcoming move.
Luca is mobile...I mentioned that already...but this is HUGE news for us.
Luca was hospitalized on Monday through Wednesday of this week. It was a scheduled admission and we received mixed news. But luckily we are back home and she is still acting well, for which I am so grateful.
I tried Talenti Belgian Milk Chocolate and HOLY MOLY, it is the best thing I have tasted in awhile.
We survived our 2nd earthquake on Tuesday. I was on the 5th floor of the hospital with Luca when it happened, and it was scary. I definitely feel for our west coast family and friends now!
Everyone is freaking our about hurricane Irene coming near us this weekend. I feel rather indifferent about it. I will be busy packing anyway.
I watched the Tudors and fell in love with that show. Also, Henry Cavill is hot.
I am sharing a team for fantasy football and am SO excited to be a part of it. I played 2 years ago, but not last year.

Have a good weekend!

Birthday Party Recap Part II

2011-08-18T13:25:00.001-04:00

Pictures from the rest of the day (all taken by my sister).

She totally passed out in the middle of the party...party pooper!

Her outfit - I am obsessed. It was a one-piece outfit which was perfect because two-piece outfits are a disaster (since it means she can get to and pull her g-tube out!).

She noticed that I was wearing earrings towards the end of the party and proceeded to attack me with determination to remove them from my ears.

When most people had left, we headed out to the swingset. While I am super critical of my body in most pictures (and this one especially), I cannot help but love this photo of my sweet family.

She LOVES swinging!

The bloomers she wore had a cupcake with one candle on the tush!

She absolutely loves leaning backwards and laying there. Weirdo!

This picture

2011-08-16T08:07:00.001-04:00

To try to remedy the fact that we do not have a single framed picture of Luca in our house, I ordered this picture on a canvas. I absolutely adore this photo and cannot wait for the final product to arrive.

Birthday Weekend Recap

2011-08-15T11:02:00.000-04:00

I started this post over a week ago - life has been mundanely busy!

Luca's birthday party was simply perfect. We would have liked to have included so many people that have thought of and prayed for Luca over the past year - but we needed to keep is small to limit the germs she was exposed to, and as to not overwhelm her. I have hope that there will be times for more get-togethers to thank those who have been so gracious and generous over the past year.

So, here are some pictures of her birthday weekend! I am going to split them into two posts because I just have so many. This post will include pictures from her actual birthday, and the decorations from her birthday party. In my next post will be more pictures from her party - of the birthday girl in her awesome birthday outfit.

We started the day by getting her into her birthday outfit, and opening presents. She was quite serious through the present opening. But she liked ripping the paper off of the presents we got her and has loved playing with her new toys.

Her clear favorite present of the day is the activity table she can stand and play with!

We ended the day (and seriously how sleepy does she look!) by singing happy birthday and blowing out her candle. She then got her fingers dirty (which she hated) with icing and happened to get some icing in her mouth. She protested by promptly vomiting. I guess she is not into the sweets yet!

(Note that all pictures throughout the rest of this post were taken by my sister Beth.)

The next day, our dear friends hosted a birthday party at their home. We had almost all of our family there, and many close friends. Everyone got along well and truly celebrated. The week before the party, I decided to come up with just a couple crafts to add some decor to the party. Ian, the trooper that he is, put together the balloon wreath. I think it turned out pretty awesome and looks so festive. And the awesome thing - it was super cheap to make and can be reused every year for birthdays!

Then, I made these little cupcake toppers. We had some mini cupcakes, regular cupcakes, and then a small cake for Luca (which of course she did not eat, so it was left for Ian and I to eat and was DELICIOUS!).

The hostess went and got this adorable table cloth with cupcakes and "Happy Birthday" on it. It was perfect. And of course, we had a party hat for when we sang happy birthday.

The dessert table included the cupcakes, cake, and chocolate covered fortune cookies (which were delicious).

The hostess and I did not discuss ahead of time the colors or a theme for the party - but it all came together well and we happened to both go with bright colors with lots of hot pink and neon green.

Next post will be pictures of the little lady at her birthday party!

Random thoughts on a Monday

2011-08-08T16:08:00.000-04:00

I need to update this blog with photos, stories, and a letter to Luca on her 1st birthday.
We managed to stay out of the hospital for her first birthday, and the birthday party. There are no words to describe how grateful I am for that.
We are desperate to find a new place to live. More stories to follow about that process.
Speaking of finding a new place to live - we now are questioning whether we should rent, but have no idea how much we would qualify for since only one of us is employed.
I would love to make money somehow - even just a couple hundred per month. But I have no idea how to make that happen.
I was grocery shopping a few weeks ago and the woman in front of me, probably in her 20's, had full armpit hair. I was so shocked and confused at the same time. And she was wearing a skirt, and did not have hair on her legs. I was immediately impressed that she felt comfortable like that (in a tank-top nonetheless), but also very disturbed by it. I think I would be uncomfortable like that.
I am still pumping. My supply is extremely low - only a few ounces per day. But I am just going to keep going until my boobs tell me I am done. As long as I am getting any, I will keep pumping. I am at a point where I am okay mentally with not being able to pump often (only a few times per day), and knowing that she is at least getting a few ounces of breastmilk per day. She has gotten breastmilk for her entire first year - and for me, I am thrilled with that.

I will leave you with one picture until I can get a proper picture post up. I took it in Luca's room a couple weeks ago and I just love how she looks like she is posing.

Planning a 1st Birthday Party

2011-08-02T16:55:00.000-04:00

Awhile ago, I posted about my apprehension towards planning Luca's 1st birthday party.

As if the title of this post does not give it away, we ultimately decided to plan a party. Here is a breakdown of how we have handled the planning of her party.

We knew we could not plan much in advance simply because we never know when she will be spontaneously admitted to the hospital for a fever or bad bloodwork. In terms of her scheduled admissions into the hospital for procedures, I pushed with her doctors for her next procedure to occur AFTER her birthday weekend. With their permission, we were able to avoid being admitted today for a procedure. I was just so worried she'd get admitted for what should only be a two night hospital stay, and then end up with some infection from the procedure or some other weird thing and we'd be stuck there through the weekend.

I sent out an invitation just two weeks prior to the party (which is coming up this Sunday!). We picked a rain-date in case Luca is in the hospital. We are having various people bring food that is quick and easy to make - nothing that needs to be ordered or taken care of too far in advance. The only thing I ordered ahead of time are the cupcakes and mini cake, and I figured we'd take all of those to her nurses if she ends up admitted for some reason.

And even though I sent the invitation out just 2 weeks before the party, and it is August (aka vacation season), we have about 40 people coming, and we're still waiting to hear from a few. It will be an awesome turnout!

Today, I went out and bought decorations and other cutesy stuff. I am trying to stay level headed about it - of course I am super excited for the party, but I am trying to keep it to a minimum level until Sunday. I am so afraid of getting my hopes up for a weekend of celebrations with family and friends, and then afraid I will be devastated if she ends up hospitalized instead. When Sunday comes and we are all set at the party, I will breathe a sigh of relief, and truly cherish every moment of that celebration.

No matter where we are, the next couple weeks are all about celebrating our little girl and how far she has come in a year - and rejoicing that we, as her parents, have made it through this crazy first year!

Housing search continues

2011-08-01T16:19:00.000-04:00

Our housing search continues. If you missed the beginning, you can start here.

Well, remember how we liked house #2? The owner got the ducts cleaned. We put in an application and were approved. Friday, we went to do a smell test to see if the smoke smell was gone. I still smelled it, primarily near the master bedroom closets (where the smokers clothes were!). But Ian and I talked it over, and we decided that we thought with a thorough cleaning, area rugs, and repainting the master bedroom (by us) would likely solve most of the issue. So we asked for the lease.

I received it from my realtor yesterday and I reviewed it last night. There were a lot of things in the lease that did not sit well with me. So I called our potential landlord (who also happens to be a realtor) and clarified things. The main things that were concerning: 1 - tenant is responsible for all infestations, including ants, rodents, termites, 2 - costs for repainting house, bringing in a cleaning crew, and replacing/cleaning carpet are all taken out of our deposit at the end of the lease (even if it is "normal wear and tear"), and 3 - for each and every repair, we have to pay $50 (this includes repairs if an appliance breaks down, not from our doing). She refused to negotiate on any of those conditions. And these were just the major issues we had with the lease.

I called our realtor, a close family friend, and talked to her about the issues. With her guidance about routine leases, Ian and I decided that this lease is not something we can sign. So, we walked away from that house.

The bad news of all of this is that I had just given notice to our current landlord that August 31 is our last day here. QUEUE PANIC ATTACK. I called Ian hysterically crying when all of this went down this morning. I could barely choke out the words in between sobs, but...where...are (sob sob) we (sob) going to live?

Before telling the owner of house #2 that we are walking away, I called our current landlord and asked if we can rescind our termination notice. He was super nice and said of course. I know our current landlord is likely going to try to sell this house in the near future, so he probably wouldn't re-rent to a new tenant after us. So for him, having us here for another month ensures another month of rent.

Back to square one, looking for a house. Seriously, what is with this bad luck with potential landlords?

I think I need a stiff drink tonight. I will drink it while I bury my nose in craigslist ads, real estate websites, etc. looking for another house. God help us - I might possibly lose my head by the end of this.

And I hope we find a place we really love. Because we might possibly stay there until we're 85 years old because I don't ever want to search for housing again!

A topic I normally do not touch

2011-07-26T12:32:00.000-04:00

I normally stay away from all political talk. I have my own opinions about things but do not strictly follow one party or another. I vote for who I think will do best, not for a specific party. Some may call this approach wishy-washy, but it works for me so that is what I do.

Last night's presidential address, and the response to it, has hit me hard. I felt like Obama went through the pros and cons of things, and pushed for his plan with reasons. I felt like the response from Boehner was prepared before he heard Obama's talk, and his response failed to address arguments that Obama raised. I felt like Boehner was just bashing the President, versus addressing and arguing the issues. I just wish they each had stuck to the facts and argued their side without getting ugly.

Did anyone else feel this way?

Regardless of who you support, our government needs to get their act together. At the end of the day, I think an agreement needs to be made, and at this late in the game, it will only happen through compromise.

One cranky baby

2011-07-22T10:13:00.001-04:00

You guys - the past several days have been painful. See that face? I have been seeing a lot of that face the past several days (and you can totally see her two bottom teeth in this picture!). Luca has been SO cranky. She goes from smiling to wailing like the flip of a light switch.

Then, she started refusing sleep...at night. For the first time ever on Wednesday night, she just outright refused to go to sleep. It was like someone had given her a shot of caffeine. She was wide eyed and squealing, but in the same instant rubbing her red sleepy eyes like it was her job.

She is exhausted. You lay her down and rub your hand across her head and she immediately sighs and closes her eyes. You leave the room, and within minutes she goes from whining to wailing, to whining to wailing to whining...you get the picture. We go back in, settle her down, then it repeats.

As of Sunday and Monday, we thought, "maybe more teeth are coming?" But that thought has quickly been squashed.

She has had a horrific splotchy rash off and on that we immediately recognize as one of two things: either she is about to spike a fever (she has ALWAYS gotten a rash around her neck and back before she spikes), or her anti-rejection medicine (prograf) level is too high.

Since we are on day 6 of sleep issues accompanied by the rash and crankiness, we think it is the latter of the two options. And I have been taking her temperature several times per day and she has been consistently stable (thank God!).

Typical symptoms of high prograf include headache, irritability, nausea, vomiting, insomnia, among other things. And Luca - has all of these symptoms. (In the past when her prograf level has been too high, she has gotten the rash so we know that that is a symptom for her.)

We had blood drawn at our house on Monday and were hoping to find out results on Tuesday. Well, Wednesday we learned from our home-nurse that the lab messed up or something so they had to come back yesterday, Thursday, to redraw the labs.

Meanwhile, Luca's symptoms have gotten worse throughout the week. And today, today is bad. She is miserable.

The worst part is, that while we wait for results, I have to continue giving her the same dose of prograf every 12 hours. Which means that as I give it to her, I cringe because I know her symptoms will just get worse in the hours following another dose.

You may be wondering why this test takes so long to get results. Well, normally we go to the hospital to get her labs drawn and we get the results the same day. But the blood has to be drawn at 9am (1 hour prior to her next dose) which means we leave our house at 6:30am to be there by then. It means packing her feeding pump, meds, food, extra clothes, food for me, and me pumping on the go. It is a lot of work just to walk in for 10 minutes to get blood drawn.

So recently we asked that if she just needs blood drawn, can we get it done at our house? They agreed to doing this but because the blood has to be taken to an outside lab company, it means the results take at least 24 hours.

If I have not gotten results by lunchtime, I am making some calls. My little babe is clearly uncomfortable and we need results ASAP.

You know the saying about a cranky mom makes for a cranky household? Well, I disagree. A cranky baby makes for a cranky household.

The role of stress on our bodies

2011-07-21T16:04:00.000-04:00

You always hear people say that stress can really harm the body. Stress increases chances of all types of diseases and illnesses. I always have believed it.

Well, I have noticed since a year ago, how much my body has aged. Looking at pictures, I criticize how I look in almost every picture. I look like I have aged a few years. My hair does not feel the same. I have a lot more gray hair. My skin is less consistent. You can just see that this past year has taken its toll on my body.

About a week after Luca was born, I was already down to my pre-pregnancy weight. But amazingly, as of a few weeks ago, I had not lost one additional pound. Even though most of my pregnancy belly had gone bye-bye (although I still have that stupid kangaroo pouch). And even more odd, is that even though I am at my pre-pregnancy weight, none of my clothes were fitting. I've gone up sizes in both shirts and pants. Shirts because of the boobage, pants because I am just bigger I guess.

But over the past 1.5 months, we have been home more. I have been eating more consistently, making our own food. And surprisingly, I have started shedding some pounds. It is too hot out to go out with L for exercise - so I was surprised when I saw that I've lost about 8 pounds.

I guess all of those months in the hospital really did take a toll on me. Although there is still stress at home, I think having Luca home has really relaxed me a lot, and I find so much more joy in my day to day life when she is home.

8 pounds under my pre-pregnancy weight. Hoping to continue feeling healthier so my clothes can get back to fitting!

And at the end of the day, my goal is to stay healthy so I can live out a long life as L's mama!

Have you ever noticed stress taking a toll on your body?

A message to remember

2011-07-20T08:30:00.000-04:00

A couple weeks ago, our neighbor asked to speak with me. We talk almost everyday so it was not a rare thing. Once I put Luca to sleep, I went over to their house. They asked if I had a handheld tape recorder. No, but why? He walked over to their small table and pushed a button on the answering machine. I knew what the message was going to be before it even started. Sunday, August 8th, 6:34am. It was the message I left them, asking them to get to church to start praying for Luca. That our baby girl was very sick and we needed all the prayers we could get. He wanted me to have a copy of the message so that Luca could listen to it one day. You can hear my agony in the message, and as I listened to myself cry in the message, full of desperation, I felt a tear pill over the side of my eyelid.

That message, while it was awful to hear, reminds me just how far we have come. And that, that is something I never want to forget or take for granted.

Housing search

2011-07-19T07:19:00.000-04:00

Over the past three months, we have been searching for a new place to live. It means that we are moving over an hour from where we currently live. It means finding a new place to rent that fits our needs. Our needs are:

more closet space
great neighborhood
must be close to our price range
better commute to the hospital, while still being an okay commute for Ian
no high-rise apartment building

Sadly, the area we are moving to is a much pricier county. We knew it would mean sacrificing on how new or updated the place is, and possibly on the size (we currently have a 3 bedroom, but know that we might have to sacrifice and get a 2 bedroom). But as long as it was clean and healthy for Luca, we'd make it work.

Well, a place kind of fell into our laps. A 4-bedroom house, just slightly over our budget, in a great neighborhood, a fantastic commute for both of us, and a lot more space. It certainly is an old house - no updates to the kitchen or bathrooms, but hardwoods throughout (that are not in the best shape) and a fenced backyard. We were super excited. We said we needed to see the house once they were finished with the work before we signed a lease.

They started working on fixing some stuff up in the house - it needed to be repainted and they tore up the old carpet in the bedrooms. The house had not been occupied in over 7 months so it was kind of stale.

Then, I tried to make a better deal. We would take care of refinishing all of the hardwoods (all two stories!), we would sign a 2-year lease instead of a 1-year lease, and we would get the house cleaned instead of them doing it, if they would drop the price by $100-$150 per month.

Any business person would have looked at this and said, refinishing of hardwoods alone would make up for that difference in rent. The increase in value would be a bonus.

Instead, the real estate agent listing the house got pissed. She avoided saying she would even present our offer to the owners. I finally just asked her to present it and get back to us. That was 4 weeks ago. I called her over 2 weeks ago and she said she was waiting to hear back from the owners. And I still have not heard back.

I am angry. Even if she did not agree with our offer, or thought it was a terrible idea, she could have kindly replied "I do not think the owners will agree but I will ask them and get back to you." She could be cordial and nice. Instead, I got attitude and a lack of respect.

So, Ian and I have decided to walk away. We are so hoping to find a new place that meets our needs. When that happens, I desperately want this real estate agent to call me back and say that the house is available for us, and me say "oh, we signed for another house. Have a fine day."

We searched for places yesterday. We saw three places. 1 - we didn't love. The bedrooms were small and everything just seemed kind of eh. Nothing updated, and not as close to town as we'd like, and was also the highest price. 2 - perfect and we would love it except the previous tenants smoked. It has already been repainted and the carpets have been replaced in some areas, while other areas are hardwoods. And it still smells terrible. Not sure we can do much to change this. 3 - if it was just Ian and I, this 2 bedroom condo would have been great. If it had a 3rd bedroom, we would take it. But it was just too small for all that comes with Luca (medical supplies in addition to all of her baby crap).

We have not had much luck with finding anything on craigslist. We have mostly been using our realtor, and looking on real estate websites as well. How do you find where you're going to live?

Random Thoughts on a Monday

2011-07-18T10:49:00.001-04:00

I have lots of updates and randomness going on. Here's what's been going on.

Luca had a scheduled procedure 1 week ago. It was a big step and we are currently on edge waiting to see if her body will handle it. So far, she has been fever free and happy. I have been praying multiple times per day that she remains so.

We were discharged last Wednesday and I have been soaking in my time at home with L. She has been so happy, chatty, and active. Instead of feeling guilty for walking away from the computer and my cell phone, I have been thinking how lucky I am to be at home with her. I have really taken a step back and though there is still a part of me that feels guilty for neglecting messages, emails, facebook, etc., I have one little being that is more important than all of that. I am learning to let go and enjoy these sweet moments.

My heart is aching for this family. I came across their blog just a few short days before they lost their beautiful boy. The way they have handled his horrific diagnosis, and the whirlwind that followed, has been amazing to see. They have handled it with such grace that I have been left speechless and in awe.

We made pork chops on the grill last night using this marinade. It was amazing.

We made salmon on the grill using this marinade. It, too, was amazing.

I watched the first season of Glee on netflix. I am now addicted.

Speaking of netflix, I am appalled at the price increase.

I decided to reread the last Harry Potter book to prepare to watch the movie. I had not read it since it first came out. It made me remember how much I loved the series of books.

If you are holding L anywhere near the laptop, she takes a lunge for it. She is obsessed with it.

When Ian calls to tell me he is on his way home, I take L outside and sit on our front steps and wait for him to get home. It has become one of my favorite times of day with her. She stares in wonder at the sky, the leaves on the trees as they rustle in the breeze, the people walking by, the birds. It is like seeing things for the first time through her eyes.

More updates coming soon now that I have a keyboard that works :)

iPad and apps

2011-07-11T13:16:00.000-04:00

This is the first time I have had my iPad while Luca has been admitted. (this was a scheduled admission and she is fine.)

I am loving this! I can blog and stay connected and listen to music and answer emails.

So, question to my tech-savvy readers, what are your favorite apps for your iPhone or iPad?

One specific app I am searching for is one that I can keep a journal of what happens during hospital stays and appointments. A place to record lab values, med dose changes, questions I have, who our nurse is for each shift, and other various tidbits. Any ideas?

Progress

2011-07-10T16:28:00.000-04:00

Today Luca ate two jars of pureed baby food - bananas and prunes. Today is the first time she ever took an entire container in one sitting. And she somehow managed to eat an entire container two separate times.

Joyful for the progress! Compared to where we were awhile ago I am so very grateful for every new thing she is willing to try.

11 months old

2011-07-08T13:29:00.000-04:00

Luca,

I cannot wrap my head around the fact that we are around the corner from your first birthday. This upcoming birthday marks a lot of things. I am sure those first moments, first days, will replay in my mind more than they typically do.

But one thing is for certain - this birthday, as all of your birthdays shall be, is an incredible celebration of your life.

So 11 months has kind of caught me off-guard, simply because of how close we are to that number 1.

You have been home from the hospital for 16 days. This is officially the longest time spent at home since your transplant and I am rejoicing for this progress. It is during these longer spans of time that you make tremendous strides developmentally. The first thing people say when they learn you have spent the majority of your life in a hospital is "she looks so healthy!" We are so very proud and blessed at how well you are adjusting to this life of yours.

You say "mama" repeatedly now and it melts my heart every single time. You stand like a champ, and get the proudest look when you manage to pull yourself up with a bit of help. You are starting to take a step here and there. You still hate tummy time and get out of it as soon as you see us trying to get you on your tummy. You have mastered the pincer milestone, and are maneuvering small objects perfectly. You are sharing your personality minute by minute, letting us know your likes and dislikes.

You have a complete meltdown if your Daddy imitates you crying. You have a similar meltdown if I sniff to clear my sinuses.

You love being outside and having your diaper off. You want to be standing more time than not, and get upset if your legs give out from exhaustion. You squint your eyes from surprise when the wind hits your face, and smile big. You are the happiest first thing in the morning.

You just started being scared of new people, especially if they invade your space.

You now have your first two teeth that came in almost simultaneously. They are on the bottom in the middle. We think you have more coming in because holy drool and snot, we cannot keep your face clean.

You are starting to take pureed foods on a daily basis. I will not go so far as to say you enjoy it, but you know what to do with it and as long as you are distracted, you will take what I give you. This has been a major accomplishment and has been such work getting this far. You have certainly made it known that you will not be pushed to do something that you simply are not ready for. Baby steps for sure!

Most people say you look like your Daddy, which irritates me incredibly. But your Dada and I think you are the perfect blend of us. You have my smile, lips and complexion. You have your Daddy's eye shape, distinct forehead, and shape of the face. The jury is still out on the nose and we think you have your very own unique hair color.

Luc - you are your own little person and we love every single piece of you. We were talking the other night and your Dada said "I do not think there is one thing that I do not love about her. Maybe her poop - but even that I do not mind really."

You are loved unconditionally, thoroughly, and I hope you always know that.

Love, Mama

Fourth of July

2011-07-07T12:14:00.000-04:00

Luca got her first cold last week. She handled it like a champ even though she cannot have even tylenol to help. I, however, did not handle it quite as gracefully when I got it from her. I was miserable and cranky. So I spent most of the 4th in bed. But I made it out to take some pictures of L on her first 4th of July. And I realize she totally looks like a boy in this outfit!

Technical difficulties

2011-07-06T13:24:00.001-04:00

I am having computer issues and hope to have a new post up with many pictures later today (if my computer decides to cooperate).

- Posted using BlogPress from my iPad

Raising a daughter

2011-06-30T22:14:00.000-04:00

I was sitting on our front steps with Luca. She was in her stroller, babbling, playing with a couple toys, looking up at the sky periodically, smiling when the wind would hit her face and make her hair stand up straight.

I heard kids from down the street. As they got closer, I saw that they were about high school age. And one of the guys was yelling at the girl he was with. Luca noticed them too, very curious about anyone who she can see. They walked by, and with complete disregard for me sitting with my curious baby, the boy yelled at the girl to "go f*$# yourself, bitch", to which she responded for him to "go f*$#" himself. Luca looked back and forth from me, to the kids several times. She is looking at me for reassurance when new people are nearby. I just smiled at her and distracted her with one of her toys.

After they were out of earshot range, she looked up at me, and while I know she cannot comprehend what I said next, I felt it was necessary to say, "do not ever let a boy say that to you."

It got me thinking about raising a daughter. I want her to know that boys should be gentlemen, and always treat her with respect. I want her to know how to stand up for herself to put a boy in his place, but then know better than to ever hang out with him again. I want her to know, too, that she should treat guys with respect.

I did not always date or hang around the best of guys growing up. But ultimately, the man I chose to spend my life with, is the epitome of being a gentleman. I hope she learns from us, and especially from Ian, how she should be treated. I think it also helps that I was raised to be a strong girl. I think it partly explains why I have a sharp tongue sometimes. And it helps that I had a brother who was super overprotective.

But raising a girl to be a strong, independent, classy girl is a tough job today. And while I know she didn't understand what I told her, I felt it was appropriate to start explaining things to her the second she witnessed that.

How do you help raise your girls to demand respect? And how do you teach your sons the same?

Random Thursday Thoughts

2011-06-30T08:00:00.000-04:00

I think it is hilarious when Luca's tush gets stuck in the bumbo. She, does not think it is hilarious - she thinks it is attacking her and looks at it and cries.

I officially have an iPad and am obsessed.
Every time Ian's brother comes from France, he brings a few boxes of french cereal. This particular cereal is addicting - chocolate crispy on the outside, with a creamy chocolate filling. It tastes more like a cookie than a cereal. It is the perfect combination of sweet and salty. (Read - not a nutritious breakfast, unless you need a sugar jolt.)
Our house is overloaded with baby crap. The swing, the bouncy chair, the sitting chair, the bumbo, toys, blankets, medical supplies. And I trip every single day over something. And every time it happens I am grateful Ian isn't there to witness it (and laugh at me).
I have a 1st birthday outfit for Luca. It's absolutely adorable in every sense of the word. It also comes with bloomers, and a hair piece that makes her look like she is going to an English wedding. That part makes me laugh.
I have a kangaroo pouch (aka, skin leftover from pregnancy that just will.not.budge.)
Sometimes, I look at the clock and think "holy hell, it cannot be only 45 minutes since Ian left for work. That clock must be wrong."
And a piece of TMI - my period has been much more painful ever since I had Luca. I wonder every month if that is normal. (Note to self, must ask dr next time I see her.)

Weekend

2011-06-29T11:55:00.000-04:00

Our weekend was full of visitors. Ian's brother came from France. My brother and his wife, and their baby came to visit. We did not plan it that way, but it just worked that they happened to all be visiting at the same time.

We had everyone over for a cook-out. Our house is much too small for that many people, but we managed just fine.

Luca and her first cousin had not met yet. We brought Luca down from her nap, and she found her cousin on the floor rolling around (he is just a few months younger than her). We set her down on the floor a few feet from him. Her lip jutted out and you could see what was about to happen. As soon as she started screaming, her cousin turned to see her for the first time, and upon seeing and hearing her cry, he too joined in. And the adults in the room - well, we all thought it was hilarious. Both babes screaming, and all of us laughing.

For the most part, they pretty much ignored eachother for the weekend. On occasion if they were sitting next to eachother, they would bully eachother a bit. Her cousin trying to get close to her face and grab her or her clothes, while Luca pretty much gave him the cold shoulder. We took a group of family photos and the babes were sitting next to eachother, and the photos are hilarious - it looks like they are fighting and pushing eachother.

And to keep Luca germ free, we kept a container of clorox wipes nearby, and I wiped down all the toys a few times during each day since both babes were putting every toy in their mouths.

The weekend was awesome for the most part. It felt so great to have most of our families with us for the first time since Luca was born.

I could not help but be a bit sad though, seeing what having a non-medically challenged baby would be like, right in front of our faces. While I try my hardest not to compare Luca to other kids I see, it was hard not to compare when a baby was staying in the house with us. To see that baby eating well, and sleeping without interruptions from pumps beeping and meds being given, to see the parents look rested, to see the baby developmentally on-track - it all became apparent just how different our lives are. And it made me long for the day when Luca is stable enough that we could go away for a night.

Our wedding anniversary

2011-06-28T16:36:00.000-04:00

(This post is oh, about a week late. Moving on.)

Tuesday, the 21st, was our wedding anniversary. It has been three years since we said those memorable words.

I Do.

And I still do.

Things have not been all bright and happy the entire three years. My first year of law school put added stress on us but we adjusted. We figured things out and when things got overwhelming (which they did), we figured out how to work through it. Ian just about had it with me leaving equal packets all over the house (as I was drinking mass quantities of coffee to stay awake reading at odd hours of the day and night). I had never seen him so angry...and over equal packets! That year was all about learning what caused the other person to tick, and how we each feel most loved. (I learned to throw my equal packets away.)

Then, our second year of marriage was pretty awesome. I got knocked up and we spent our second year going through all of the joys of pregnancy. We enjoyed the time we had left as just the two of us. We prepared for becoming a family of three. We grew up a little bit and stopped thinking of only "us." I prepared to be a mom and a law student. I was able to balance being a wife, being pregnant, and the demands of law school fairly well.

Then, Luca came along during our third year of marriage. They say having a child flips your world upside down. Boy, that's an understatement! This past year has been stressful. That first year of marriage, when I was in law school, was not even a taste of the stress we would have to endure. When we first heard L's diagnosis, we huddled together, and had a discussion. We prayed for a lot in those early days. For Luca. But also for our marriage. We knew that losing a child, or having a child with medical difficulties could wear on any marriage, even the strongest. We learned that the divorce rate for those who lose a child or who raise a child with special needs is higher than the average divorce rate. We vowed to work through it all...together. We prayed that we would have what it takes to make things work, for us, and for Luca.

It has not been easy since that conversation. We bicker more than we ever had. We have moments where we each feel alone, him from being the only one working, me from being the primary caregiver. But, we also have experienced a love we never had. And true, overwhelming, life altering joy. We love our child in a way neither of us expected. And we love each other in a new way. It's a love through admiration for the other person. We admire eachother for what we each have had to do to be a great parent for Luca.

And through it all, it has been worth it. It is not the life we expected when we said those words. But we would still say them over and over again, knowing what we know now. And at the end of the day, there is no other person we would want on this path than eachother.

(Pictures taken while out to dinner to celebrate our anniversary. We went to The Black Olive - it was the first dinner just the two of us since my birthday in November. It was SO nice to have a date night!)

Special Forces

2011-06-28T13:11:00.000-04:00

I have a few posts I am working on and hope to get one up today. In the meantime, this was passed along to me and it hit home. It is an article that really is quite amazing.

Special Forces

Random Thursday Happenings

2011-06-23T15:03:00.000-04:00

We came home last night with Luca. She was admitted Monday night for a procedure on Tuesday. This was the shortest hospital stay we have ever had. Thank God.
Luca finally has her first tooth. She is 10 1/2 months old. How insane is that?! But it turns out that the steroid she was on immediately after transplant to suppress her immune system can delay teeth from coming in. Who knew?!
Luca has on occasion been fussy but generally is happy. I think she her threshold for pain is high considering what she's been through, which has made this teething business not bad at all.
I woke up this morning to use my breastpump and nada. It would not turn on. I switched to a different outlet, and it proceeded to turn on, then off then on then off, then finally, shut off completely. then panic ensued. Needing to use a handpump takes FOREVER and when I have a baby that required meds, it meant pumping was not going to happen. Luckily, we bought a warranty with the pump and will be fully reimbursed for the broken one.
On my way to BRU (babies r us) to get said new breastpump, my AC in my car stopped working.
Inside BRU, Luca vomited all over my FIL.
And I couldn't help but just laugh at everything that went wrong because honestly, all I care about in life are my loves and that my babe is happy, and that she is, even after puking everywhere.

Father's Day

2011-06-20T08:35:00.000-04:00

I wanted Ian's first Father's Day to be special, to show him how much I appreciate that he is my partner in our crazy life. To recognize what an amazing Dada he is to Luca.

When I got pregnant and we thought about having a baby girl, I expected he would be pretty involved. But then we all know that we did not have the typical baby experience. What did it mean? It means he has had to step up to the plate to be highly involved. There is just too much to do with Luca for him to take a back seat. Sure I am home with Luca during the day. But when Ian gets home after a full day at work, he and I work together to get everything taken care of. I imagine he is much more involved with her than he would have been had she not had medical hurdles.

He really is into parenting with his entire heart. He gets home and takes over so that I can pump and get dinner out. He takes care of all of her meds every night, so that they are ready for me the next day. We take turns doing bedtime. He preps her feeding pump every night. He takes care of sending out our bills. I never have to handle the trash or recycling. He takes the 3am and 6am diaper changes, and adds food to her feeding bag overnight at the 3am. He gives her morning meds before he leaves for work. He lets me sleep in every single weekend.

And the way he is with Luca makes my heart melt. You know when you see a Dad with his daughter and it makes you all "awwww", yeah that's totally my reaction everyday when I see him care for her. He is gentle and sweet. He consoles her. He talks to her. He laughs his head off at any and every thing she does. He raises and lowers his voice in animation when he reads to her.

Oh, and let's not forget that he got cut open and gave a portion of his liver to save her life. No big deal.

I got him a new coffee mug (he drinks a lot of coffee these days!) with pictures of him and Luca together. Then I got this picture framed. It's one of the first photos of Luca with her Dad just minutes after she was born. I hope he had a great day!

Big eyed fish

2011-06-19T22:55:00.000-04:00

I have a post coming about our weekend, but seriously, this photo is hilarious. She totally looks like a fish with ginormous eyes.

While standing in line to get coffee

2011-06-18T09:58:00.002-04:00

Thursday we had to go to the hospital to get Luca's labs and she had a doctor's appointment. Clinic days require us to get up before 5am and be on the road by 6:30am. We are both exhausted on these days.

When we were finished with her appointment and lab draw, we headed down to the cafe for Ian to grab a coffee (so he could stay awake on our drive home - over an hour drive). We waited in line and all of the sudden we both spotted it.

The guy in front of us, wearing dress pants and a button down shirt, had a hole in the seam of his pants on his butt. I got a case of the giggles. He was leaning over looking at the yogurt selections and you could see that the hole was about 2-3 inches long.

We both felt terrible for the guy. Then, we were caught with deciding what to do - tell the guy or not. I was going to tell the guy, but then Ian said "no - then you'll be admitting that you were looking at his butt." So we didn't tell him. And I feel like a bad person for it.

What would you do? And am I the only one who finds this type of situation hilarious?

Pretending we are not that close

2011-06-17T09:58:00.000-04:00

I have been ignoring some of my favorite blogs. Not because I do not want to read what is going on in their lives. But specifically, I am ignoring any posts that relate to planning a child's first birthday party.

I so desperately want to look forward to Luca's first birthday. And it will be a celebration of one hell of a year of life.

My old self pre-Luca would have planned a party for such an occasion. I would have gone all out. And I would love to do that now. But I do not know where she will be near her birthday - in the hospital, or at home? How do I plan a party when she could be admitted on the date of the celebration?

So I apologize if I am not writing on your post about your baby's first birthday. It is such an exciting occasion for any parent and I ordinarily would love to hear what you are doing to celebrate. But I cannot do it right now.

How do you think you would handle this situation?

My best friend offered to plan the party and suggested we have two rain dates (but in our case, it would be because she is in the hospital). I am certainly thinking that might be an option. But will people hold that many dates? Will people understand why we have to do that, and be okay with it? And will people follow the instructions that if you or a kid has a sniffle, you do not come? And will people think it is weird that instead of being greeted first with hugs, they will be greeted with signs to use the hand sanitizers throughout the party?

And do not even get me started on the cake-eating tradition for first-birthdays. How do I handle that when my baby hates food?

See what I mean? This is overwhelming! Lots to think about. We obviously cannot let the occasion go without some celebration. But what kind of celebration can we, or should we plan?

Almost Wordless Wednesday

2011-06-15T10:15:00.000-04:00

(Totally going to be a little dancer like her mama)

(Video taken yesterday 6/14 - 6 months since her transplant! And I couldn't get the video to focus, but it's the sound that matters more than the video itself.)

Luca the terror

2011-06-14T10:45:00.000-04:00

By 9:30am this morning, Luca has already managed to disconnect her g-tube twice, requiring a change of outfits. Food everywhere. She had the end of the feeding tube (where it should connect to her belly) in her hands, abount 3 inches from her face, examining it as the food pumped onto her hands (outift, carpet). My post from Friday was well-timed apparently.

I will take it though...anyday of the week I will take this if it means we are HOME!

First weekend home in a month

2011-06-13T09:18:00.000-04:00

Our first weekend home in over a month - it was awesome. Although I will add that holy crap, Luca has grown up so much since a month ago. Friday I was EXHAUSTED from taking care of her on my own all day. She is into everything and needs so much attention.

Saturday we had family over to help entertain L so that Ian and I could get things sorted out in the house. We did a massive cleanup and organization of a few rooms in the house. Ian sorted the mail and bills. Luca played and napped (tough day for her clearly!). We even managed to break away from the house for an hour to do a grocery run. Seriously, it was the most money spent in the least amount of time at the grocery store.

Sunday we lounged around and then headed out in the muggy heat for a big walk. I sweated like crazy and it made me realize that I had not been out in the heat yet this year so my body was not used to it! Ian did not start sweating until about 1/2 into the walk. Luca lounged in her stroller, facing out like a big girl (no longer in the car seat adapter portion). Every time one of us would walk ahead of her, her face would break into a wide grin. For most of the walk, you could glance down at her and all you'd see was her feet kicking in the breeze. She loved every minute of the walk and stayed awake for all of it.

Now, I am getting back into a weekday routine. So very happy to be home! (I am working on uploading pictures while the princess sleeps.)

Her 90th Birthday

2011-06-12T13:28:00.000-04:00

Some of our extended family is in New England today celebrating my great Aunt Cyrilla's 90th birthday! When I spoke to her this morning, I asked if she was excited for her birthday party. "No!" was her only response, followed by a short laugh. I hope I have those types of remarks when I am 90!

Curiosity

2011-06-10T10:28:00.001-04:00

(I will start this post with the good news that we are home! Ok, onto today's post.)

Luca is at the age where she is into everything. If it is near her vicinity, you can count on her seeing it, and trying to get it. If she does get it, she wants to pull/bang/examine it. She is curious, for sure.

This is normally a fun things to watch. As long as you surround her with kid-friendly items, it is like seeing new objects for the first time through her eyes. An empty shoe box, how amazing! A plastic spoon, wow this is the most cool thing I have ever seen. Ohhh, and the way my hand sounds when I pat the box, the most beautiful sound I have ever heard!

But things are a little different with Luca. There are TONS of not kid-friendly items near her, and even on her. Like the two long tubes that stick out of her onesies that go into her liver and bile ducts. It would be really horrifically bad if she ever pulled those and yanked them even partially out. And her g-tube sticks out the bottom of her onesie as well. She has yanked that out a couple times, and it never ceases to startle me when I see the hole in her belly and have to reinsert the tube into her belly. (Here is a post I did about the specifics of her g-tube, and comparing it to a piercing.)

And she also has a PICC line, which is like a permanent IV into her upper arm. I dangles down long enough for the hand on the arm that it is placed to reach it. So we keep the PICC tucked under a bandage to prevent her from being curious.

So Luca is learning very early on what my scolding tone sounds like. I will sometimes turn around for a second to pick up my drink and turn back around to see she is yanking on one of her drains. I do not mean to scold but I know the consequences of that tube being pulled and the thought of it being pulled sends such alarm and panic through me that I cannot hide it from her.

I normally pry whatever off-limit item from her hands and tell her "no, we leave our tubes alone." She normally reaches for it again while I find an okay item to hand to her in place of the off-limit item.

This age is also quite challenging for Ian and I to empty the bile drains (the bags that attach to the drains have to be emptied twice a day, and yes it is as disgusting as it sounds). Or to change her PICC line dressing (the site where her PICC line goes in is sterile and has to have a specific dressing on it, and is done with a specific technique that it require both of us to work together to do. Only the person who is wearing sterile gloves can touch any of the dressing items). Or to change the bile duct dressing where the drains go into her abdomen. This dressing is done the same as her PICC dressing and is a pain to say the least.

And let's not forget about the fact that Luca has IV meds run 4 times per day, so the IV tubing hangs. For this, she has to wear a restraint on that arm so that she does not play with the line the entire time. She really enjoys wearing the arm restraint. Or not.

Ian keeps saying he cannot wait for Luca to walk. Easy says it for the person who is not alone with this ~~maniac~~ angel all day. If she is this into all of the stuff around her now, and she is not mobile, God help me when she is mobile! Of course I am excited for any new milestone of hers, but I do not mind that we still have some time until she is walking.

Random Thursday Thoughts

2011-06-09T10:32:00.000-04:00

The family we stay with made cake pops this week and all I can say is YUM.

Sometimes I feel so much love for our child that it builds up and I feel like I might burst, and then, as if it is the only way to pour out, tears drip over the brims of my eyes…Tears of joy.

I feel incredibly blessed that I married the right person for me.

I am giddy whenever Luca giggles.

My child’s feet smell even after I scrub them with soap. She thinks it is funny.

I am afraid that last sentence is due to the fact that I have horrible feet (not smelly, just not that pretty).

I have not been home to our house in a month and it feels so odd. I miss our bed. And while I miss certain things, our house does not really feel like "home" anymore. That makes me sad.

My legs get itchy right before bed. I have no idea why.

I depend on my GPS entirely too much.

I want an iPad.

I do not have a single picture of Luca framed in our house and feel like a horrible parent because of it.

I need to make many doctor’s appointments (general check-up, midwife annual appointment, eye doctor). But I have no idea when I will be able to go.

As I was going to sleep the other night I had one thought that kept me awake: if we move (yes, we are looking to move. Because we have nothing else going on in our lives), we have to find a new pediatrician. I puffy heart Luca’s pediatrician so much, I even contemplated doing the (over hour) drive for her appointments, then decided that would be ridiculous.

Guilt

2011-06-08T12:36:00.000-04:00

I was driving home last night, or rather, to our home away from home, lost in thought about our life (as usual). I was getting close, anxious to get back to eat and see Ian. He left work so late that by the time he called to say he was leaving, Luca was falling asleep. So he went directly home instead of meeting me at the hospital.

I felt down, as I normally do when I leave the hospital. So I was singing along to music that was turned up too loud. I was in the left hand lane of the busy road where people drive over 50 mph. I happened to see something move in the middle of the grassy median.

A baby deer. I glanced around to see if any mama was with the baby. But the deer was all alone, eating at a shrub. Clearly much too young to be alone.

The next thought in my mind "just like Luca."

Instantly, the guilt washed through me. What a horrible mother I am every time I leave her at the hospital. Logically, I know I cannot be with her all the time. And I know she is not really alone since she knows every nurse so well.

But the emotional part of me, the mama in me, thinks that because I do not sleep there, maybe she does not even feel like I am her mom. Maybe she thinks I am just the person that comes to keep her company everyday. Will she suffer and not be capable of having true emotional bonds because I am not with her overnight? Is she suffering already?

All of these thoughts played on repeat once I saw that deer, all alone. Stupid I know. But real.

The logical part of my brain kicks in, reminding me that every night nurse reports that she falls asleep within 10 minutes of me leaving, and that she sleeps through until the next morning. She does not wake up for her diaper to be changed. She does not wake up to her IV beeping. To does not wake up to her monitor monitoring her vitals beeping occasionally. She does not wake up every 4 hours for vitals. She sleeps through almost all of it. And if she does wake up, she goes back to sleep almost immediately. I would not stay asleep for all of that. I would be awake. I would actually probably disturb her sleeping MORE because of tossing and turning on a creaky chair while I try to sleep, or when I have to pump, or go to the bathroom. She associates me leaving with it being night-time, time to go to sleep (much like she would at home when we turn off the lights in her room, place her in her crib, and leave her to sleep).

But no matter how much I try to justify that to keep going and being put-together and continuing to love and care for her during this crazy journey that I need to sleep, I cannot wash away the guilt that aches through every muscle in my body. The guilt that aches in me every time I am not with her. It does not go away. It is ever present.

I had never experienced that type of guilt until I had Luca. Sure I feel guilty for various things in my life - but this type of guilt is something that never escapes. Guilt that she has this disorder. Guilt that she has to endure so much. Guilt that she may never have siblings. Guilt that she will never have a "normal" life. Guilt that I cannot make things better. Guilt that I cannot be with her all the time.

Stupid deer.

Welcome

2011-06-06T12:29:00.001-04:00

Hi there!

I know I am getting some new readers so I thought I would take a moment to show you around. First, welcome! You should know that I try my hardest to post often, but with our lives being kind of insane right now, I go missing sometimes. But I always come back!

Let me tell you a little bit about me, and this blog! I am Katie (although I go by several different names). I am wife to Ian. Mama to Luca. This blog started (in 2007) as a way to document the planning of our wedding after Ian proposed, but has evolved into a place where I document funny stories, some sad stories, - basically all of the adventures of our life together.

We had an amazing wedding in Washington, DC, a spectacular honeymoon in Greece, and then moved to Baltimore just a few weeks later for me to enter law school. Our first year of marriage was full of joy and adventures, especially with my nose burried in the books for most of that time.

We were shocked to learn we were going to expand our family. Just a few months later, we learned that our lives would be filled with pink, and that Ian would be surrounded by his three girls (me, Tessa, and baby girl). I was blessed with a smooth, happy pregnancy. I went way past my due date (and yes my dates were accurate, and yes the waiting game was freaking awful). Then, finally, baby girl debuted 2 weeks, 3 days past her due date. Giving birth was one of the most wonderful and wild things I have ever done. I still wonder how she ever fit in my belly, or fit coming out of me! (You can read her birth story: Part I here and Part II here.)

The night before we were discharged from the hospital, Luca got sick. I spoke about that day here. She was diagnosed with a rare metabolic disorder called Urea Cycle Disorder (specifically, CPS-I). Once she was released from the NICU over one month later, I talk about the transformation. Until December 14th, our life was busy keeping Luca healthy!

Then, Luca had a liver transplant (thanks to my hubs, Ian!) on December 14th, 2010, to act as a cure for the metabolic disorder. Luca's story even made it into the paper. We have been in and out of the hospital since then. All the while, I am still pumping (even though it is a big pain in the butt)!

Browse around in the archives to read more. Some months that had some big events were June 2008, July 2008, August 2008, January 2010, March 2010, August 2010, December 2010, January 2011. Feel free to post comments or questions or you can even email me at frommagerkstoidos@gmail.com. If you want to continue reading our journey, please follow the blog (or follow me on twitter). Thanks so much for stopping by:)

Happy reading,
Katie

Some other posts that I either like, or think are helpful:
A picture I've been waiting to capture
Should
Some things don't change
When someone has a loved one hospitalized: Part I
When someone has a loved one hospitalized: Part II
Feeding Tubes
Feeding tube questions answered
The ugly side
Here
A typical day in the hospital
My first mother's day
Picture post

A typical day in the hospital

2011-06-03T12:24:00.000-04:00

I get ready in the morning, packing her clean clothes in my bag, neatly folded. I pack my lunch. I take an extra outfit in case I stay that night, or she gets food/medicine/poop/pee/vomit/blood on my current clothes. I pack my toiletries, a book, my pumping supplies, a cooler pack with my milk, the camera, video camera.

I am out the door and in my car. I drive the 35 minutes to the hospital. I greet the parking attendants by name. I get irritated with the car in front of me driving through the garage - clearly I know where I am going to park, and they do not. They inch along hoping a spot will be open - I follow impatiently, knowing we have to go down to at least the 7th floor to find a spot.

I park on the west side of the lot, knowing that puts me to the door that is quickest. I unload my pumping bag, and huge purse/overnight bag. I climb the steps to the 3rd floor and exit the garage. I enter the hospital and go up to her floor. I push the button to be buzzed into her unit. I greet the nurses, again knowing each of their names.

I will find her either asleep in her crib, or playing with one of the nurses in the nurses station. I say her nickname, and she slowly turns, knowing exactly who is standing near her. She greets me with a huge smile. Then looks from each of the nurses, back to me, over and over again.

I pick her up and we go to her room. I put all of my things down and pay attention to the most important person. Her nurse comes in and hands me her labs for the day. I review them quickly, knowing I will review them more later, when she is asleep.

The day goes by with me changing her diapers, moving her from her crib, to her bouncy chair, to blankets on the floor surrounded by toys. Many people stop by - doctors, therapists (she gets PT and OT while she is in-patient). She is mostly happy until I make her work by doing her daily exercises. Once those are over, she is back to being a happy lady.

One of my favorite things to do is lay on the blankets with her. She babbles to me for over an hour sometimes. I sing to her. I rock her. I breathe in her sweet, and sometimes salty scent. We play peek-aboo. I kiss her cheeks more times than I can count. In return she pats the side of my face or pokes my lips or nose.

Then people arrive. Ian, or one of our parents. I hand her off so I can sit and pump. We all stare at her, our hearts filled with joy.

Eventually, she winds down, sometimes more gracefully than others times. I pump again while Ian spends time with her. We chat with her night nurse after change of shift. Then visitors leave. Ian rocks her. We each give her kisses. Then he puts her in her crib and gets her settled. I give her one last kiss and wait outside the room while he puts her to sleep. He emerges from her room quietly.

We exit the hospital, and the parking garage, another day closing, leaving without our babe. Our hearts are torn - blessed by a happy day with her, but heavy knowing that we are not home with her.

One thing is for sure - she is loved, every single day.

I am ready

2011-06-01T08:54:00.000-04:00

I am ready for some normalcy in my life. I would love to bring my baby home...and have her stay home for 3 weeks in between her procedures (I would take longer, but am trying not to get too greedy here). I am ready to hear good news. I am ready to hear, specifically, that her numbers are dropping consistently and it is a sign that her bile ducts are healing.

I want to get into some type of routine. By routine I mean going for a walk with Luca, working with Luca on her feeding by mouth, getting her into a sleep routine in which she will not be disrupted by someone for bloodwork or vital checks.

I want to go to her clinic appointments without both of our cars packed (because we are always prepared to be admitted). I want to walk away from these appointments hearing good news, with Luca in my arms, and return home.

I want to be able to go grocery shopping weekly instead of getting enough for a day or two (because inevitably if we go grocery shopping, we end up throwing it all away because she gets admitted).

I am so ready for some good news. I am putting it out there into the universe that we need some good news. To keep going, to have motivation, to stay mentally present.

Dear, sweet universe, please.

Happy Memorial Day Weekend

2011-05-27T11:19:00.000-04:00

While I read facebook status updates about heading to various beaches, or other warm, relaxing destinations, I cannot help but be a bit saddened that we are in the hospital. How I long for the day when we can take Luca away anywhere for even a night! I pray it will happen for us one day.

In the meantime, we will be entertaining our little babe in her hospital room. It looks like we should get some nice weather for part of the weekend and I will not allow it to pass without the sun touching Luca's skin. We will take some breaks to go outside and sit in the grass and soak in the sun and each other.

Have a safe and blessed holiday weekend!

The place I let all my fears out

2011-05-26T11:38:00.000-04:00

I vowed when Luca was in the NICU, during the first week of her life, to stay positive around her. I asked that people not cry in her room while visiting her. Tears were a big part of those early, scary days, so I excused myself often to breakdown.

We have mostly kept that rule. We make it a point to be Luca's biggest fans, her cheerleaders. I feel that she does not know anything bad right now...she only feels all the love around her. She does not understand she is in the hospital. She does not understand that she is having complications. She only understands how we present things to her.

As a result, when I hear bad news while I am with her, I respond mostly logically. I bottle up the sadness, devastation, heartbreak of seeing her go through more struggles and save it for later.

Most days, I go home to sleep. Because Luca is considered a "frequent flyer" (that is what people at the hospital call patients who are there really frequently), she knows every single nurse on the unit extremely well. She goes to each of them willingly, happily. When she sees them, she smiles wide. This fact makes it easier to leave her. Seriously, I am so grateful that the nurses on her unit are so incredible. I know they quickly get to her if she wakes crying. They snuggle her. They give her love. As a result, she sleeps through the night. However, I do not when I sleep there. In fact when I do stay there, I am up a lot while she sleeps through it all. So I go home to sleep.

On really rough days, I can feel all of the emotions of the day building up as I walk to my car. The closer I get, I can feel it building from my stomach, up my chest, into my throat. I get into my car. I give the parking attendant my ticket, and as soon as the gate doors open and I exit, I do not make it to the light before the tears start rolling down my face.

My car tends to be the place where I let all of my fears out. I cry, and cry, and cry. The whole 35 minute drive, I cry my eyes out. Sometimes alone. Sometimes while on the phone with one of my dearest people in my life who just sit and listen, or cry with me.

My car has become a place to let my guard down. I can let all of my fears wash through my head and escape through my tears. I can pray. I can talk out loud - which I often do (and the people driving next to me probably assume I am speaking into my ear piece for my cell). I can let my anger out.

It was not something I consciously thought about as being a place of quiet. It just happened over time. To the point that I can feel a sense of relief as I get into my car, knowing that I can breathe and cry and let it all out. And then by the time I reach my destination, I have let it all out. I can walk away and feel more free. I can put on a happy face on go on with life. I can be Luca's cheerleader, hide my fears, and be the positive person she needs me to be, knowing that I have a place to go when things get to be too much, and I need to let it out.

Two recipes for you

2011-05-23T09:27:00.001-04:00

Chorizo Carbonara: I made this recipe a couple weeks ago and it was awesome. Most definitely not for the vegetarians out there. It has a little heat to it but if you do not like spicy food, you can probably find some not-spicy chorizo at your store. I substituted some lactose free whole milk in for the cream and it was still delicious. When I was mixing the egg and milk mixture into the pasta, I thought "well this cannot possibly be good" but by the time I got it the table, the sauce had coated the pasta nicely. I topped it with some parmesan cheese. Also, this recipe was super quick to make!

Creamy Pasta with Leeks, Peas and Parmesan: This recipe was passed along to me and I made it last week. I doctored it up a bit, using lactose free whole milk (and a bit of light cream) instead of heavy cream. I also added parmesan, and some garlic powder. It was really good!

Enjoy :)

My name

2011-05-20T09:07:00.001-04:00

"Do you go by Kate, Katie, Kt?"

Ummm - all of the above. There is some confusion about my name. My formal name is Katherine. My parents picked my name, thinking that they wanted me to have a formal name in case I went into a serious profession. How awesome is that, considering I am going to be an attorney in time!

Depending on who you ask, I go by something different. I introduce myself as Katie except in formal settings.

Ian, my brother, my Dad, and several close friends solely call me Kate. In fact, Ian's work people only think my name is Kate because that is the only name he refers to me as.

My mom, and other friends, sometimes interchange the two names - using them both.

All acquaintances call me Katie.

At law school, most of my professors know me as Katherine, or Ms. (last name).

And at the hospital, most of the nurses call me Katie, while her doctors call me by Mrs. Thomas - even though that is not my last name. I kind of look around in confusion when this happens because I do not identify myself with that last name - and also, being called Mrs. anything makes me feel old!

Which do I prefer? I have thought about starting to only go by Kate. But honestly, the switch will be hard for me to make because I am just so used to introducing myself as Katie. And I kind of like that my closest people call me Kate - it makes this name seem more intimate to me.

But there you have it. Lots of names. I will respond to any of them (except Mrs. Thomas - I get super confused when I am called this - so it may take me a minute to figure it out). Take your pick - I like each of my names for various reasons!

Have you ever switched up the name you go by?

How I fail to answer questions

2011-05-19T07:30:00.002-04:00

These days, I am so cautious about what I tell people. The hardest question I get asked on an almost daily basis is "how is Luca?" Seems simple enough, right? But unless someone has kept up to date on the caringbridge site, how do I condense what has happened over the last 5 months (Saturday was 5 months since her transplant) into a simple answer?

Do I just answer as to how she is doing in that instant? Do I answer honestly, and say she is just "ok"? Inevitably, if I answer with just ok, it is followed by tons of questions about why and then I feel like I should have just gone into detail from the beginning.

Now, I am typically saying "she is feeling ok but is having complications that keep us in the hospital a lot." But this answer, too, leads to questions.

The most common follow-up question that is hard for me to answer is "is she going to be okay?"

How do I answer that? Not only is that a difficult question to answer, but it also brings forth all of my fears about this entire situation because honestly, I do not know. Yes she is okay today - as in, she is here with me, snuggling, smiling, even if we are in the hospital. So for that, I am incredibly grateful. I know too many moms who cannot say that their baby is here with them, and there is not a day that goes by that I take that for granted.

But I do not know if she will be okay. Do we really know if any of us are going to be okay?

And then, if I say she is having a great day, people are then completely confused as to why she ends up in the hospital the next day, and say "well, I thought you said she was doing great?"

I do not know what the future holds. I pray everyday and thank God that we have today. I try desperately to stay in the moment. But how do I do that when people constantly ask questions about our future, about Luca's future?

And then, people get confused when I say she is in the hospital. I get questions like "but I thought she had the transplant awhile ago?" People do not seem to realize that transplants are incredibly complicated procedures. There are complications with any transplant - but the younger the patient, the higher the risk for complications. If we could have waited until she was even a year old to transplant, we would have. But Luca could not wait - it was critical that she be transplanted exactly when she was.

I so wish I could just say "Luca is doing great!" and that I did not have any complicated answers. But that is not reality. The reality is that things are complicated. Things change from day to day, sometimes even from hour to hour. She is stable. She is mostly happy. We spend a ton of time in the hospital. We snuggle her no matter where we are with her. She feels love from everyone around her, including the people who care for her. We do not know what will happen tomorrow, next week, or a year from now. But we know we have today, and we will never ever take that for granted.

How do you answer complicated questions?

Blogger Spotlight: Matt Logelin

2011-05-17T09:20:00.002-04:00

I am sure this post is pointless because I am pretty sure just about everyone already reads Matt's blog. But I received his recent book as a gift for mother's day. My friend knew I had been reading Matt's blog for a couple years now and happened to see the book and grabbed it for me. His story is a sad one but I have so enjoyed reading his blog for awhile now, and almost always brings a smile to my face to see pictures of his sweet Maddy.

And even thought I have been reading his blog for awhile - some of the stories in the book were very new to me so it was still a great read. It made me cry, smile and laugh all at once. And with his love for using curse words, I loved it even more. Enjoy.

A break

2011-05-16T11:40:00.000-04:00

Since Luca entered our world over 9 months ago, I have not taken much time for me. Sure, I spend time away from her when she is in the hospital. But it is normally to just go and sleep.

One thing that I have been needing was a haircut. I got one about a month before Luca arrived...and had not had one since then. It had been a whole TEN MONTHS! Craziness.

My hair desperately needed a good conditioning, cut, and I wanted to brighten things up a bit. So Saturday I took time to get it all done (thanks to my sister who treated me). I got it majorly cut (about 5 inches off) and got highlights. You would think it was enjoyable but honestly, I do not find getting my hair done a relaxing time. I stress out and pick out anything that does not look quite right. The highlights came out way too light so we fixed that (although I think I might have to go back again to get them toned down even more). But it is done - and it needed to be. Maybe I won't wait another 10 months to go back.

Sunday, I went bra shopping! I had been dying to go to this specialty store who are supposed to be the bra experts. One of my friends met me there and I am not kidding when I tell you that I felt like a new woman when I left that bra shop. My ladies were lifted and my posture was better. I was measured at the same size I had been wearing - but apparently I was wearing the straps incorrectly and it was making my ladies sag. I walked into where we stay when Luca's in the hospital, and everyone commented on how different I looked. A new woman, I tell you! And if you are in the DC area, this is the store.

As nice as it was to take time for myself, it was back to reality when I walked into the hospital afterwards and stepped into my mom role, reviewing Luca's labs for the day and getting a daily report. But, that's life. Little moments of normalcy mixed into our crazy life!

Random Thursday Thoughts

2011-05-12T10:45:00.000-04:00

I am a bit obsessed with our new Keurig coffee machine. I get excited every time I make a cup.
I am loving the weather right now...except for allergies.
Luca is looking more and more like a little lady to me instead of a baby.
Luca has totally figured out that when she gets angry, she gets picked up. She has turned it into a game and as soon as I pick her up, she looks at someone nearby and smirks.
There are not enough words in the English language to describe how sick I am of Luca being in the hospital. But I pretty much have been using the f-bomb in various forms to describe how irritated, sad, and angry I am.
I have a lot of built up anger because of our situation.
I wish we could have more days like Mother's day - that picnic was awesome.
I am really working on practicing patience but find that the more I try, the more I get frustrated.
I want to go get fitted for new bras but want a buddy to go with me for the excursion. I even found a specialty boutique store that does it.
I have not had a haircut in 10 months - but am planning on getting one in the next week and cannot wait.
Despite major efforts to increase my milk supply, my supply keeps getting smaller and smaller. But I refuse to just throw in the towel because Luca is 9 months old, and while she has had tons of infections related to her bile ducts, she has yet to have a regular cold or virus. I don't think it is by chance that we have had that good luck. I will keep pumping until my boobs give me nothing.

Picture post

2011-05-10T15:02:00.000-04:00

My first mother's day

2011-05-08T20:56:00.000-04:00

As most of our holidays and special celebrations have been spent in the hospital over the past 9 months, I was trying to push mother's day out of my mind. I did not want to get my hopes up for some amazing mother's day. But then we came home on Thursday and I was secretly really excited for today.

Ian and I have not really had much time to spend coming up with creative ways to celebrate days, especially with how hectic our lives are. I mentioned that I was excited for today, and he was not shy about saying he had not planned anything. I completely understood because for every other holiday so far, we literally have not had time to even get cards most of the time. But I was still disappointed.

Then, he came through. Nothing like a little last minute planning.

The day was perfect. I slept in until 10. Then, Ian came into our bedroom holding a cheery baby who smiled huge when she saw me. She was wearing a "Mommy's girl" bright yellow onesie. He put her next to me and she laid there, babbling, smiling, patting my face. She was holding two cards. One from her (including ~~a homemade drawing~~ scribbles from her), and one from Ian. The cards were all crinkled from her playing with them - exactly how they should be.

We relaxed for a bit and then Ian told me what he had planned for the rest of the day. He packed a basket full of snacks while I prettied myself up a bit. Then we got in the car and headed to my all-time favorite park. It is located in an upscale neighborhood and has tons of nooks to seclude yourself under a tree. Flowers surround you in any spot in the park. It is quiet and huge trees soar above you. You can hear the squeals of children in the distance.

We spent a few hours having a picnic, snapping photos of our babe, and enjoying the quiet. The weather was perfect. Then, we stopped and got takeout on our way home.

We ended the night by giving our girl a bath. For some reason, she was especially excited before bedtime, squealing, laughing, babbling the loudest we have ever heard. It made my heart melt and I felt more blessed than ever to be this little baby's mama.

It was not a crazy day. We did not spend a lot of money. It was quiet and sweet and lovely. It truly was a day I will remember forever as an amazing first mother's day.

Home and Nine Months

2011-05-06T14:07:00.000-04:00

We came home again last night. Similar to when we first brought her home from the NICU, or when we brought her home for the first time following her transplant, I have mixed feelings.

You see, they ended up trying something different to get her bile ducts to work...they are going to ride it out without any intervention. Since they opted to do this, she has been uncomfortable, barely smiling, crying, just wanting to be held. I had them run every test just to rule out that nothing else was wrong.

But with nothing really "wrong", and the desire to see if time will heal things, we came home. Now it is just a waiting game. The great news is that Luca has been acting better. Hopefully things will heal themselves.

In the meantime, we are celebrating being home for Luca's 9th month birthday.

If we actually stay home for a bit I am planning on several posts with updates so stay tuned

Here

2011-04-27T23:13:00.000-04:00

To anyone who is still reading, I am here. We have (what a surprise) been in and out of the hospital the last week. With big bad news yesterday, I had a meltdown. And if I'm being completely honest, I haven't quite stopped having that meltdown. I think it was due. I've been holding it together for 9 months, being tough, positive, keeping hope and faith.

But news yesterday that our sweet baby may need another transplant took my breath away. I felt like I had been punched in the stomach.

There are a lot of details to what is happening...too many that you won't be interested in. But only time will tell what her little body needs. She is currently happy and I am grateful for that.

It brings back so many fears. My mind wanders to scary, dark places. I don't dwell in these thoughts, but they do enter my mind. And I have been afraid to say my fears out loud for fear that saying them will make them come true. It is irrational but it is how I feel.

We opted to transplant her because it was the best chance at giving her a happy life. We had hoped it would give her a life outside of the hospital. But that's where we've been living basically for the past 9 months. I am tired. I am devastated.

My heart is aching for so many reasons. For Luca, for Ian, for our family. I am sad. Right now, I'm just asking God to give us some good news. I'm asking for hope. I am asking that our Luca can heal and be home with us. I am praying that her liver (which is working well) and bile ducts (which are not working well) work in harmony to keep our baby healthy.

I have so many things I want to write about. I will get to it soon.

The dramatic

2011-04-20T12:23:00.000-04:00

I put my hair in the highest ponytail possible. Then, I bob my head side to side, making the hair go wild in every direction, while I make goofy "bah-bah-bah-bah-bah" sounds. I hear her response instantly. A hearty belly laugh, followed by a high pitched squeal.

I stand, make a mad face, take my hand above my chest, and cough loudly, while patting my chest hard. I hear her response instantly. A hearty belly laugh, followed by a high pitched squeal.

I stand, raise my eyebrows, and dramatically say "ahhhhh, ahhhhh, ahhhhh, ahhhh-choo" and during the last part, shake my head side to side while leaning forward. I hear her response instantly. A heart belly laugh, followed by a high pitched squeal.

And in these moments, my heart swells. I repeat the same motions over and over again, just to hear her again and again. I could do it all day long just to hear her precious voice.

I think she might have something in her future in drama. The more dramatic the motion, the bigger response I get.

(P.S. - We are in the hospital. I will try my best to continue posts during this time.)

The great feeding debacle

2011-04-19T11:46:00.000-04:00

As I have talked about numerous times, Luca is fed through a g-tube. You can see various posts about it here.

This post talks a lot about vomiting and feeding. A fun post indeed.

The majority of her readmissions to the hospital over the last 2.5 months have been due to her bile ducts being obstructed. (A little lesson on your body...your bile is what makes stool colored and is also responsible for helping your body absorb nutrients. When your bile ducts are obstructed, your poop turns white - weird! End of lesson there.) Often with the bile ducts being obstructed, patients vomit frequently and experience nausea. Luca certainly followed this symptom - I was doing about 5-7 loads of laundry per day a couple months ago because she was vomiting anywhere from 5-10 times per day. Fun stuff.

(And you all know how freaked out I am by vomit - this was a tough time in our household - I was sad for Luca that she felt so ill, but I was also personally battling the automatic response of RUNNING when hearing someone vomit.)

But over the last month, the vomiting has become less frequent. (Thank God. Seriously.) She is vomiting about once every few days now. I attribute the improvement to an improvement in the bile duct issue...now that she has drains in both bile ducts, the issues must be improving.

In February, we met with an oral therapist. She advised us to skip the bottle since she had such a negative association with it, and try solids. The first few tries weren't completely bad - as in, she would not cry when you tried. She did not know exactly what to do with the food, so she'd hang onto it in her mouth for about 3 minutes before swallowing it.

(Pictures taken in February - this was her first time trying solid foods - sweet potatoes to be exact. The top picture shows the face she mad every.single.bite. She gave us some very serious stare downs at that time. And the bottom picture is when we were all finished with that trial...not happy.)

But then, the vomiting phase began and her gag reflex was so strong that attempting to feed her by mouth was futile. She would gag as soon as anything hit her lips. And over time, she started hating that we were even attempting this new trick. So we stopped for many weeks and in that time, the vomiting decreased.

Now, we are back to trying. But, she has developed a strong aversion to anything being in her mouth besides her paci or her hands.  So we are taking extremely small baby steps, not wanting to push her too much, but certainly trying to desensitize her a bit.

I decided to stop trying pureed foods and just stick with plain old rice cereal.  Over the past week, I take a couple times per day to work with her on it.  I let her play with the rice covered spoon as a distraction. With very clean hands, I dip my finger in the food and then touch it to her lips. Then, I let her do what she wants. She normally grabs my finger and lets it roam her gums. As long as she is tasting it and not refusing, I consider this great progress. Little by little, I've been letting more and more hit her tongue. And she's been swishing it around and then swallowing it. Progress indeed!

Part of the problem I think, in addition to her negative association with anything going in her mouth (she was suctioned a ton in the hospital post transplant, and she gets a horrible tasting medicine swished around in her mouth at least 2 times per day), I think she has trouble sensing hunger. Why? She is fed continuously via her g-tube 22 hours per day.  We do not let her get hungry! She was switched to continuous feeds during the vomiting phase so that she would never have too much food all at once. But now that she is vomiting less frequently, I want to talk to her doctors about switching back to feeding her on a schedule (about every 3.5-4 hours). I think this will allow her to feel hungry, which may help us feed her by mouth.

And the sad thing is...she is SO intrigued by food. If a bowl of food passes by her expect her hands to be in it. And she stares us down so seriously, wide-eyed, when we eat in front of her. I am hopeful that we will continue to make progress and that one day, eating will just click. I pray that one day, she can have the g-tube removed. I pray that one day, we will look back and think "wow, remember when she wouldn't eat! look at her eat now!"

The whole feeding debacle has been one of the most frustrating to deal with. The medicines we can handle. The muscle weakness from being in a hospital bed for so long is something I can understand easily.  But eating and drinking are such basic functions and everywhere you look you see everyone doing just that.  As a result I am reminded all the time that Luca is different. It is devastating for your child not to be able to nourish herself. And people ask ALL THE TIME about how she is doing with food. I have been politely asking people to stop asking me...that I will let them know when she is eating like a champ.

One day she will get it. For now, we'll keep working on it and pray that she continues to improve.

A weekend at home

2011-04-18T08:21:00.005-04:00

(I posted two new blog posts over the weekend...go ahead and look at those and then come back to this story...go ahead...I will wait for you :) ).

Saturday we spent the day lounging around our house. It was a horribly rainy, windy, stormy day (so sad for those to the south of us who experienced such horrible weather). So we stayed in our pj's. We made a ginormous breakfast with pancakes, eggs, and sausage, and delicious coffee. We put on some music. We moved Luca from swing, to floor, to activity mat, to bouncer, to one lap, to the other's lap, and back around again. We kept busy, giving her plenty of exercise. We had a mini dance party...just the three of us.

When we have her out of the hospital, it seems like she moves so quickly developmentally - like she had been bottling up all these new tricks and then releases each of them within a few days of coming home. We become the parents who are obsessive about doing tummy time and different strength exercises (we meet with physical therapy to give us new ones for her) because we have to try to keep her up to date. But she enjoys (almost) all of it. [She hates tummy time. Which is really fun because it is the one thing she needs the most work on. Oh and also really fun when she wakes up on her belly because she rolled onto it while sleeping and then wakes up completely freaked out. Queue the screaming.]

Sunday, the sun came out. We opened up the windows and breathed in the fresh spring air. I made oatmeal with sunflower seed butter and banana slices for breakfast. I would have loved to have gone out for a big walk...but we had a home nurse coming between 2-4pm to help us hold Luca down for her dressing change (queue the screaming again please). We once again turned on the music and played with Luca all day. We eventually ventured out to our patio after Luca took a nap (following the screaming marathon for her dressing change). We had a package of hot dogs in the refrigerator that needed to be used up. Ian fired up the grill while I sliced a couple onions and put some delicious garlicky dressing on them. We put a blanket on the patio and Luca's activity mat. We set her up there and I sat quietly and just listened. Our house backs up to a big building so our voices can echo a bit. Luca thought hearing her voice so loudly was fun - and she repeatedly squeeled in delight. She sat there, looking up at the sky, occasionally looking at each of us to smile, and talked for about 45 minutes.

We quickly ate our dinner before we needed to head up to get L ready for bed. We have to take her up at 7pm every night to do all of the medical chores before bed. It was 6:55pm. I looked at Ian and asked if he had cash. He did. He didn't need to ask why I wanted cash. We quickly scooped Luca up, threw on our shoes and stepped outside. We walked the familiar way down the block to our favorite summer spot. It was the first visit of the season. I really did not even care about eating the ice...I just wanted to do something carefree that I had thought about doing the entire time I was pregnant last summer. And I do not have to worry about her being near people because it is outside. And I do not even have to stand in line with other people as long as Ian is with me. It was delightful.

I have lots of pictures from the weekend but our laptop shift key has permanently frozen making it impossible for me to do anything. So you'll just have to imagine our weekend...it was quiet and beautiful all at once. Looking forward to more of these times soon.

I've been found

2011-04-17T11:13:00.000-04:00

It was bound to happen at some point. I do not really know how I feel about it.

Recently, I've been looking at the statistics for my blog. Specifically, I have been noticing a trend for how people are getting to my blog. A few different variations of "Luca urea cycle blog" and "Luca liver transplant blog" are continuing to show up as search phrases.

My close friends and family members know about this blog. I am normally fairly careful not to bash anyone on my blog. Call me weird or whatever, but I feel badly doing that most of the time and feel like we have enough in our lives to have bad karma added to it. I am a big believer in what comes around, goes around.

I had not, however, shared my blog on my facebook page. I had not opened it up to my high school people, despite how amazingly supportive they have been through this entire journey with Luca.

But is it time to? I really would like to expand the audience for this blog. I want to make this blog into something more than it is now. And if people are finding my personal blog on their own (thanks to Luca's name being so unique I think), does it really matter whether I try to keep it from facebook?

I am interested, how open are you with others about your blog? Who have to shared it with?

Money, Control, Perspective

2011-04-16T17:28:00.000-04:00

We have recently been brainstorming a lot about where to go from here. The "here" is that we rent a two-bedroom house in Baltimore but that living in Baltimore is no longer working for us. I am not in school and have no idea when I will be able to go back to finish. We are spending about 10 days per month at our house because we are at the hospital in DC so much with Luca.

Then, we got some unexpected news and realized that moving, while before was just a far-off idea, is something that needs to happen sooner rather than later.

We find ourselves at a loss. We would ideally like to move back to the DC area. But rental costs are higher there than here. And that brings us to the huge realization: we are stuck. We are 28 and 30 years old, and financially we are stuck.

You see, we knew with me going to law school that we would make sacrifices. So we did. We do not live in some lavish area or in a lavish place. We have not gone on vacation since our honeymoon. We have chosen not to go to some out-of-town weddings because we simply could not afford it. We have skipped giving each other presents for holidays and cut back on presents for family members who understood our situation.

Then, we had Luca. And the costs not covered by insurance are considerable. Now I understand why so many families with special needs children end up having trouble financially. With the traveling expenses, the food expenses while she is hospitalized, the deductibles, the prescriptions, the costs that exceed our insurance coverage - it all adds up to a double digit number.

When Luca was hospitalized in August, in the very early beginning of this chaos, we cut out a lot of expenses. We cancelled our gym membership. We cancelled some services in our home. We consolidated some insurances for a lower price. We haggled to get better rates on some services. I have not gotten a haircut since before she was born. Ian switched hair places to a cheaper place. We stopped going out to eat. We eliminated gifts for birthdays and holidays for each other (and even for other people, sadly).

This is not something anyone ever prepares for. You do not prepare for some major medical crisis.

It is a hard pill to swallow: we have not made bad financial decisions and yet are having trouble getting by. And how do we dig out of this mess? I wish I could go work to make money. But unfortunately, she is not stable enough for us to leave her at home with anyone. Sure we have family that can watch her occasionally. But with her being in and out of the hospital so frequently, and her appointments happening so often, we really need one person home.

We are searching everywhere for a new place that works for us. We do not care if the place is not updated as long as it is clean, and in a very safe neighborhood. Here's to hoping we can find something that works for us.

I am not saying all of this to get pity. I am simply putting it out there so that people understand what having a medical crisis can do to a family financially. Not all people struggling to get by have made bad choices. Not all people struggling have overspent. Sometimes, it is very much out of our control.

It is scary really. This thing called control. You think you have it, but really, it is just an illusion.

At the end of the day...this situation continues to give me perspective. We have a roof over our heads, food in our bellies, and we are all alive and happy, together. That really is all that matters.

Random thoughts on a Wednesday

2011-04-13T11:14:00.000-04:00

I want my baby home for an extended period of time...desperately
I keep thinking that an ipad is a necessity for my lifestyle. It would be much easier to keep track of Luca's meds, her appointments, drs names and phone numbers, check email, etc...all in one portable place.
Worrying about getting Ian's sickness is consuming. I have been eating very little, all bland foods, just in case I end up getting it. Paranoid much? I think so.
This is the first year ever that we have not finished our taxes yet.
Speaking of taxes, we better be getting a whole lot of money back considering our medical expenses paid out.
I have so many people I want to write a note to, and have not gotten around to it. I feel horrific guilt about this because I would never want people to think I am taking their kindness for granted.
I feel blessed on a daily basis.
That being said, I do pray that God will give our baby, our family, a little breather.
I have been looking back at pictures from a year ago and ache for the simplicity of our lives back then...and remember how amazing it was to be pregnant, to have pure joy for the upcoming arrival of our baby.
I think my baby is the most beautiful baby born...ever. I think this is how every mom feels about their child.
I am obsessive about washing my hands.
A friend recently brought this over...and I am officially addicted.

Incubated

2011-04-11T11:54:00.000-04:00

It is no fun for anyone to get sick. You feel crappy, you want to curl up in bed. We have learned that as a parent, it is even worse because you cannot just lay in bed and sleep all day.

It tends to be more scary for Ian or I to get sick because then we have to go through major disinfecting (more than usual) to keep Luca healthy.

Ian woke up with the stomach bug yesterday. Queue major freak-out. If you know me, you know my biggest fear is vomiting. So the fact that he had sickness coming from all areas makes me panic.

Luca is in the hospital so in a way it is good that she is not at home at the moment. I literally followed him around bleaching everything. I confined him to one room and one bathroom to make it easier to keep things clean.

But my big worry is not that Luca will catch it since she is not here...but that I will catch it. Therefore, it means I cannot go see Luca in the hospital. I am literally confined to the house, waiting to see if this horrific bug will get me too.

And...I miss my baby. Today will be day 2 of not seeing her. But, we cannot take a chance since her immune system is compromised. Her poor nurses will have to deal with lots of phone calls from me today.

8 Months

2011-04-06T14:45:00.000-04:00

Today marks 8 months since Luca entered this world. And, she woke up in her own crib today. Unlike months 4, 5, 6, and 7, we are home celebrating her 8 months. To say I am happy would be an understatement. I've been floating around the house since we woke up this morning, on cloud nine.

Luca has been rolling from back to front for awhile now. She is able to roll onto her stomach, but she stops herself on her side because she absolutely hates being on her stomach. So imagine our surprise when we checked on her last night, and she was sleeping partially on her stomach. But we were not surprised when less than a half hour later we heard screaming: she had woken up on her belly and was angry. She has the strength to roll over back onto her back, but gets so annoyed with being on her belly that she screams and bangs her arms and legs against whatever surface she is on. We are not sure whether being on her belly is uncomfortable in terms of her scar, gtube, or bile duct drain.

Every time we get her home for a few days, she progresses developmentally so quickly. In the hospital, she kind of slows down. Then we get her home, and she wants to catch up for lost time. She is desperately trying to sit without any assistance and does for a few seconds at a time - but you can tell that her core muscles still have a way to go to catch up completely. She has been talking nonstop since we came home. She was babbling before, but now she is chatting away while we're driving, while I am doing the dishes, even in her crib.

Yesterday, I started the task of trying to feed her by mouth again. I tried rice cereal and she did better. I think we will stick to that for now until she actually makes some progress with it before we try anything with a stronger taste.

She loves standing. She needs assistance staying up, but she locks her legs and moves her tush back and forward to bounce a bit, with a huge smile across her face. Then, after about 10-15 seconds, her legs get tired and she does not know how to sit, so she whines until I help lower her to the ground.

She sleeps pretty well so long as we put 4-5 pacifiers around her in the crib. That way, when she wakes up to move positions or stirs, she can feel around and find a binky to hold. She does not even necessarily put it in her mouth (although she normally does), but so long as she is holding one, she falls back to sleep on her own.

She is obsessed with laying on her back, bending her knees, planting her feet flat on the ground, and bouncing her tush on and off the ground. She normally squeals with delight when she does this. It's hilarious to watch (but not so hilarious if she has a dirty diaper that has then been smashed from her bouncing on the floor). Like this:

She weighs about 8.5 kg. She wears a size 2 or 3 diaper. She wears almost all 6-9 month clothes (some 9-12, and can squeeze into some bigger 3-6 month stuff). She tends to outgrow things in length before she outgrows them in width.

Her hair is super long up top, short on the sides, and pretty much nothing in the back. Party up top, business in the back. It's a dirty blond type color, but either shows up in pictures dark, or bright red. Very weird.

People are split as to who she looks like. A lot of people say she looks like Ian. But she looks super similar to how I looked in my baby pictures. And unfortunately Ian's baby pictures got lost somewhere so we have no idea what he looked like as a baby so we cannot compare. But I will at some point post my baby pictures so you can see for yourself. And honestly, it sounds weird to hear that my manly husband looks like my feminine baby girl. Most of the time, I see a little bit of each of us in her.

It's hard to believe all we have been through in 8 months time. When she entered the world and was placed on my chest, I never knew what God had lined up for us. But I knew in that moment, that I loved this precious baby girl more than anything or anyone. I knew in that moment that I was a mama - and a proud one to say the least. Although the life we had imagined we'd have as a family of three is not what we had expected, there are some things that did not change: the love we have for her and the goal we have to give her a happy life.

Music to my ears

2011-04-05T09:54:00.000-04:00

I love this video. Her giggling is music to my ears. Please ignore how annoying I am in this but apparently when you birth a child, dignity goes out the window and you will do anything, make ridiculous voices and noises, just for that beautiful sound to leave your child's mouth. (Does anyone else hate hearing their own voice as much as I hate hearing mine?)

When someone has a loved one hospitalized: Part II

2011-04-04T08:48:00.002-04:00

If you're just getting to this and want to catch up, you can read Part I here.

Part II will focus on material things that can help a family when their loved one is hospitalized.

1. Food. This is a HUGE one. It seems so simple yet it is the number one thing for us. When we were in the NICU, the last thing on our mind was eating. But our families were bringing us food, bottled water, snacks. It forced us to not only eat, but to take a short break. And while taking a break from being next to Luca was not what we wanted to do, it was totally necessary to stay sane. And if eating meant I had to leave to go find food somewhere, and choose what to eat, it was just too overwhelming. It was so nice to get a call on my cell phone from someone saying "I have dinner in the waiting area - come eat." Some suggestions for types of food to bring:

pasta (although you can only have pasta so frequently - so try to mix it up)
healthy foods like salads (it is so hard to eat healthy on the go, so it was easier if someone brought it to me)
snacks like a bag of clementines, already cut up apples, bite size carrots, granola bars, grapes, mixed fruit
sandwiches or the fixings for the family to make their own
stuff that can be reheated quickly and easily

2. Donate. If you don't have the money to donate, there are other ways to help! Whether it is donating your time by running an errand for the family, or helping with something at their house. Or donating money to a foundation for the disease they are battling, or to them for extra expenses. Or maybe going to a blood drive if the loved one has received lots of blood. We received notes from a couple foundations that they had received donations in Luca's name. We were so touched by these acts of kindness. It let us know that not only do they care about us and Luca, but they care about what Luca is going through.

3. Send something to say you care. Send a card. Send a care package. Send anything to let the person know that you are thinking about them.

4. Care packages. We loved them. We received packages that were super helpful during our stay. During the NICU period, I sat and pumped while I read through magazines that had been sent in a package. On the day of Luca's transplant, I sat with all of my family and friends and we did sudoko puzzles. I have a book of crosswords from a bloggie friend that I carry with me for hospital visits. Another friend got me a cute makeup bag full of small toiletries for when I stay at the hospital. You can walk into Luca's hospital room on each of her visits and know how much she is loved by the amount of cards and little mementos people have sent. Another friend gave me a notebook to keep track of everything I was learning, to keep track of what was happening each day, to write down my questions, to keep the business cards from each of the doctors (I still use that notebook all the time).

5. Offer help once everyone is back home. I have always heard that when a loved one dies, the loneliest and hardest part is after the funeral is over. That is kind of the same now except not a funeral. It seems like when Luca was the sickest and in the hospital, everyone came together to help and we were bombarded with support. Then she came home and that help diminished a lot. Yet, she was still sick. We were exhausted and super busy. Once we came home, some awesome friends continued to show their support. They brought us dinners. They came to visit. They came over and did some laundry for us. They ran errands. They continued to be there.

6. Surprise them. We were staying with people who I consider family. One day I came home and there were a couple new shirts sitting on my bed. I had been so busy at the hospital, I had not had time to get some shirts that fit my nursing-size boobs. And it's not like these were fancy schmancy shirts - just a couple of plain shirts from Old Navy. But I started crying. It was exactly what I needed yet didn't have the time to recognize it. Another time, someone dropped off a bag of our favorite coffee. I thought of them with every cup we drank. It made me smile.

7. Ask them what they need. This one is so simple. But just asking the question is helpful!

What would you add to this list?

Random thoughts on a Wednesday

2011-03-30T08:37:00.001-04:00

I am tired of telling people that we've been admitted back into the hospital (and yes, we were admitted again on Monday)
I am STILL sore from my weekend workouts
I watched The Fighter over the weekend - it was really good
I feel guilty on a daily basis - this is a whole post that is a-coming
I love how open my relationship is with Ian - open enough that we can tell each other when the other person is driving us crazy
To occupy Luca, I sometimes turn music on in the kitchen, put her on my hip, and dance for an hour. She loves it. And so do I.
We get told on a daily basis that Luca looks like a Gerber baby. I smile at the idea that Gerber, or any baby company would feature a baby with a massive scar on her belly.
I miss seeing friends in person.
I tried this recipe yesterday and have been wanting more ever since.
I've been using the site picnik.com to edit our photos. It is free and I have been super pleased with the way my pictures have turned out.
I have no idea what tomorrow brings, let alone what will happen in 1 month, 6 months, 1 year from now. I have no idea whether I can go back to law school. I have no idea whether we will still be in Baltimore. All of that uncertainty scares me.

What are your random thoughts today?

Post pregnancy body

2011-03-28T08:46:00.009-04:00

With all that has happened with Luca, I have not really touched upon the state of my body post-pregnancy. Well, I gained a total of about 23 pounds while pregnant. I weighed myself 1 week after she was born, when she was in the NICU. I was a few pounds below my pre-pregnancy weight (so down about 26 pounds). That's what happens when you have a baby in the NICU I guess. I wasn't eating well, I was pumping, and I was up on my feet nonstop.

Since 1 week post-delivery, I haven't lost another pound. How does that happen?! My belly has certainly gone down a lot since 1 week post-partum, but my weight hasn't gone down. And while I'm a few pounds under my pre-pregnancy weight, my body is very different. I can't seem to get rid of this belly. Although I'll admit that I haven't really had the time to work out to try to get rid of it. And I'm still a size bigger than I was pre-pregnancy. Which makes me a very unhappy camper every time I try to put clothes on.

I decided that everyday we are not in the hospital, I will try to get some exercise in. I'm putting it out into the internet world so that I have to try to stick to it. I realize with our crazy life right now, that I may not be able to stick to it every single day. But I'm going to do my best to make 20 minutes per day to take care of myself. Even if it doesn't make much of a difference with my weight, it will help make me feel better. I'm going for progress, not perfection.

On Saturday, I started doing Jillian Michael's 30 Day Shred. And holy hell, on Sunday I woke up feeling like I'd been hit by a truck. And I kind of liked it.

A realistic goal for me: work out on the days I can, and ultimately, fit back into my pre-pregnancy clothes comfortably (I fit into most of my pants, but I have a major muffin top going on. And until I stop pumping, my shirts will forever be too short - but otherwise my shirts fit just fine). And if I'm being completely honest and aiming for my ultimate goal, I'd love to lose another 10-15 pounds. Bam. Let's get to it.

(And no...I am not brave enough to post before and after pictures - well not brave enough to do bare belly ones like Kim. I may post before and after pictures after I try this working out thing for a month. We'll have to see!)

High Five

2011-03-27T09:00:00.001-04:00

A video of Luca from a couple weeks ago...her newest trick.

Blogger Spotlight: JJ Scholl

2011-03-26T10:24:00.001-04:00

I recently saw that one of my facebook friends had a name change. I clicked on her name and sure enough she got hitched...in October. Holy crap I am so behind! Then I saw that she has a blog. And not just a little blog like mine - she has an amazing blog. Jenny and I went to college together and studied abroad in Spain. While there, you could tell there was just something so cool, unique, mature about her. And her fashion style is something I envy. I immediately became engrossed in her blog and if I'm being honest, wanted to live vicariously through her. Hope you enjoy reading through her eating, fashion and travel adventures as much as I did.

A future mascara model

2011-03-25T08:00:00.002-04:00

Often, I lay on the floor next to Luca and put my head above hers. My face is inches from hers, and she instantly moves her hands to touch my face. As she does this, I take the opportunity to memorize every part of her face. We have been noticing that Luca's eyelashes are incredibly long and luscious. I assure you she does not get them from me. Ian has pretty eyelashes, but honestly, even his cannot compare to just how stunning hers are. I am sure she will not continue letting me stare into her eyes for much longer - she'll be hard to get to sit still in time. For now, I soak her in and cherish these sweet quiet moments together.

Pieces of my past

2011-03-24T08:55:00.001-04:00

Awhile back, my mom brought a big plastic bag up to our house. One by one, she pulled out clothes. Not just any clothes.

We sorted through everything and I was instantly excited for Luca to share some of the clothes that I wore as a baby. I just looked at all of them more closely today as I washed them. I looked at the fine details and wondered where I wore each outfit, how old I had been, what I looked like in them. I am determined to go through my baby pictures and find some of me in these outfits. Then, take pictures of Luca wearing these same outfits. The shoes, so amazing. And the 80's rain jackets - incredible. Click on each picture to enlarge and see the awesome finds.

The ugly side

2011-03-23T13:29:00.000-04:00

It took one picture. I saw it on a very close friend's blog. A picture of babies, who were arranged by age. It was like a dagger through my heart.

I can get over a lot of things about the situation we're in. I can deal with the face that we cannot see our friends. I can get over the fact that we cannot take her out into the public, doing things as simple as grocery shopping. I get up everyday and see her smile, and keep going. I try to hide certain feelings, instead focusing on the positive that our baby girl is here, smiling, progressing.

But seeing a picture of babies together - a picture that she should have been in - yeah, that sucks. A huge lump formed in my throat as soon as my eyes hit the screen. Then, it all sunk in.

It's not that people shouldn't be having play dates. It's not that people shouldn't be excited about their own baby. It just makes me sad for us.

And, I finally, the picture brought forth a feeling that I have been trying to hide. Jealousy. It isn't pretty. I am not proud of it. But there it is. Here, in me, it stays. My eyes hit that screen, and I processed what I was seeing. And that ugly feeling came out like a ton of bricks.

I am jealous of so many things. I am jealous every time I see someone around me bringing their new baby home two or three days after delivering. I am jealous every time I hear about a baby's baptismal party. I am jealous every holiday when families all get together, and we are either stuck in the hospital, or confined in our house because we cannot risk having friends or family over. I am jealous when I hear that a baby is doing any normal baby experience, like, eating. I am jealous when I saw pictures of a new baby on Santa's lap. I am jealous of any pictures of play dates.

Then, there is the whole slew of jealousy towards the moms. I am jealous of moms who have had time to do anything for themselves. I am jealous of moms who can be out and about with their baby. I am jealous that other moms gets to exercise, and lose the baby weight. I am jealous of parents who can call a babysitter to come over, without first having to give a full day of training. I am jealous when I hear of anyone talking about getting pregnant for their future kids, knowing that while we are able to get pregnant, we cannot do so without a major risk of having another child with UCD.

With all of this jealousy, comes anger. Anger at the world really. I have hesitated saying it, but part of me is angry with God. I get angry when I hear people complain about stupid shit - like having a rainy day on their caribbean vacation. I am angry that people take their kids for granted. I am angry when people brag everyday on facebook about some developmental milestone their child has reached. I am angry when people ask when we'll have more kids. (That one is two-fold - angry that they'd be thinking about us having more kids when we are up to our eyeballs with taking care of just one, and angry that after hearing the disorder is genetic, they don't think that this is probably a touchy subject for us.) I am angry that we will not have more kids naturally - that although we are able to - we logically cannot put another child through this. I am angry that this experience has taken our lives, and turned them upside down, done a black flip, and turned them back sideways.

These feelings are not something I can just hide. I have been trying to push them aside. But in that one picture, those feelings came pouring out. Although I may not be proud of those feelings, I am not ashamed of them. They are real. They are a part of this journey. And while these feelings may always be there to some extent, I will try my damndest to heal. To focus on the positive. To focus on our beautiful baby girl. To focus on how far we've come. But I will allow myself to feel things, to absorb where these feelings come from, to not hide them. I think the only way for time to heal things, is to accept our lives for what they are.

While there is so much positive in our lives, there certainly is an ugly side. I just want that ugly side to be the minority in my life. To be able to stay positive the majority of it. To look down, see Luca smiling, hear her giggling, kiss her chubby, honey scented cheek, and breathe a sigh of relief. A sigh of comfort, that we are all here. Together.

She is my comfort when this horribly ugly side comes out. I never knew how much you could depend on a little baby. But in that moment, when the ugly side comes out, I think I am just about as dependent on her for comfort as she is on me. And all I want to do, is immediately breathe her in, snuggle her, and look at what a miracle she is.

Feeding Tube Questions Answered

2011-03-22T12:44:00.000-04:00

First off, if I suddenly go MIA from the blogging world, it normally means that we're back in the hospital with Luca. That's where I have been. She was admitted 1 week ago today, and we were discharged last night. Hoping to get back to blogging regularly now that we're back home.

I posted about our experience with Luca having a feeding tube. You can read the original post here.

A few people asked some questions. I am all about raising awareness for Urea Cycle Disorders, and everything that comes along with it. As a part of that, I am open to answering questions to make it seem more real, less scary. Along the way, if you have questions, please feel free to ask. So here are the few questions, answered.

Will Luca ever get the g-tube removed? It is our hope that she will have it removed eventually. However, she will need to be eating/drinking all of her food by mouth and taking all of her meds by mouth for several months before it can be removed.
How will it effect her long term? People can live their entire lives with g-tubes. People have them for all sorts of reasons. There really isn't anything about having a g-tube that will inhibit her from doing anything. She can bathe, swim, play sports. She may not want to wear a bikini as an adult - but so be it. While we don't want her to have it for long, if she does need it, it will be normal for her to have it because it's all she's ever known. Eventually when and if we can have it removed, it will leave a little round scar (very small in comparison to her massive transplant scar).
I've seen a g-tube on another child before and it doesn't look like Luca's. What's the difference? We were lucky that the doctor inserting her g-tube was able to go straight to a MIC-KEY button. That is what Luca has - a button. The advantage to this is that we can detach the tubing, and it sits flush against her skin, just like a little button or port. In the picture I posted, the tubing is detached and the button sits nicely against her skin. Normally, people start with a tube that comes straight out from their bellies, and therefore it cannot be detached. Once the skin heals around that tube, they normally can upgrade to a MIC-KEY like Luca. It just depends on the doctor, and the specific case whether they go straight to a MIC-KEY, or start with just a plain old tube.

Clinic day

2011-03-13T23:23:00.001-04:00

I wake up to the familiar buzzing sound. I reach out and hit the snooze button on my vibrating phone. Before I know it, I hear it again. Repeat. And finally, a third time it goes off, but this time I hit dismiss and begrudgingly open my eyes.

Big sigh.

But I must get up. Lots to do.

Make formula. Pack breastmilk on ice. Pack medications for the day. Sneak into Luca's room to start her IV meds without waking her. Pack our "just-in-case" overnight bag. While I do so, I worry about what today's visit will bring. Will her numbers be alright? Will something be off? Will we be re-admitted? I hate packing our bags for the what-ifs of what the day may bring. Pack the stroller. Pack a bag with extra clothes for Luca for the many outfit changes we do each day (thanks to Luca vomiting so frequently). Pack blankets that we put on top of her to try to save her outfit (this method only sometimes works). Pack diaper bag. Pack toys. Pack her health binder.

Then, wake the sleeping baby. Change her diaper. Change her outfit. Get her into her carseat. Get her out of her carseat for another diaper change (little stinker normally poops in a brand new diaper). Back into carseat.

Pack the car. Carry her, attached to her feeding pump, to the car.

Grab my purse, my breastpump bag and extra supplies for the day, and cooler for what I pump during the day.

And we're off. Just another clinic day (a checkup with her transplant people). We do this twice per week. And will continue to do so. I cannot wait until we're on a once a week schedule. We are exhausted on clinic days.

P.S. - Today, the 14th, marks three months since Luca received part of Ian's liver. Incredible!

Feeding Tubes

2011-03-11T14:14:00.000-05:00

Another UCD mama found this article awhile ago and I'm so glad she shared it. Here is the link:

What it is like to have a child with a feeding tube

To read about why Luca needed a g-tube in the beginning, you can read this post.

When her geneticist talked to us about her possibly getting a feeding tube, we were apprehensive. Some UCD parents opt to use an NG tube (a mini tube that goes up the nose, into the gut). He explained that often they do this to avoid having to get a g-tube - but he also explained that ultimately, the majority of them end up coming back months later to have the g-tube inserted. We went over the pros and cons, but ultimately decided to go with the g-tube because Luca, at just 2 weeks old, was already yanking the NG tube out of her nose (and giving her nurses more work by having to insert it over and over again).

We were nervous about it. A hole in our baby's stomach? Ew. And freaky! But when she came out from the procedure and we saw her belly, it looked so neat and clean on her cute little belly. Here it is (a pre-transplant photo):

Then, we had to get used to it. The first time it yanked out, I'll admit that I freaked out a little bit. And the first time we had to change the button (which basically means just take the gtube out, and insert a new one), I was TOTALLY freaked out.

And I'm sure you're wondering what that's like. So here is the analogy her GI doctors used: it's like an ear piercing. Except for an ear piercing, there is a little backing to keep it in place, for Luca, there's a little balloon with water that acts as the backing. So you take the water out of the balloon using a syringe, then you take the earring out, put a new earing through the hole, and fill the balloon back up. Easy peasy.

And in hindsight, getting that gtube was the best decision. Luca is still not interested in eating by mouth. Why? Well, we know she gets hungry now (we can hear her belly growling sometimes) so we know she should be sensing hunger. But imagine that you never wanted to eat, and then all the sudden sense hunger. Oh, and add in that it's been a long time since you've filled that hunger by eating. She is confused? As if that isn't enough, she's been ventilated, had her mouth, lungs and throat suctioned, been given medicines by mouth, etc. She's had a lot of bad experiences with things being in her mouth - it's no wonder she reacts negatively when we try to feed her. Besides the fact that Luca is still not interested in eating by mouth, the medications are a breeze to give to her. And she takes a LOT of medication. It also has its perks: she does not wake up at night to feed because we pump food throughout the night. We do not have to wake her to take meds.

She can take baths with it, she can even swim with it as she gets older.

These are her current medications. This is majorly reduced from when we first came home post-transplant. One by one, we're eliminating a medication. But it's a very slow process. Keep in mind, this excludes the one IV med we give her every 8 hours, and these are the meds from 8am to 8pm (we also have more meds to give at 10pm and midnight).

I think it is the hope of every parent (of a child with a g-tube or feeding tube dependent) that one day, your child won't need the device anymore. And that is our hope for Luca. We hope that one day, feeding will just click for her. But for the time being, we are so grateful she has something that makes us easy to deliver nutrition and medications.

Do you have any questions about feedings tubes?