The place I let all my fears out

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.

My first mother's day

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

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

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

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

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.

Incubated

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

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

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?)

High Five

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

A future mascara model

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

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

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 fact 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

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.

1. 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.
2. 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).
3. 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

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

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?

7 Months

I wrote this post yesterday morning...but didn't get to finishing it up until now. 

Luca is 7 months old today!  How are we spending our day celebrating?  Oh we're back in the hospital.  Sigh.  She was in the hospital at 4 months, 5 months, 6 months.  I was hoping we'd be home on the day of her 7 month birthday.  But then I checked on her at midnight on Friday night and she felt hot.  After a thermometer check, she was indeed running a fever.  A fever for an immunosuppressed baby = not good.  A fever for a baby who has a PICC line in her arm = not good.  So off to the hospital we went at 2am.  She was admitted.  Luckily, her fever came down on its own by the time we'd gotten to the hospital.  And it has stayed down since then.

I really had hopes.  High hopes.  Better luck for 8 months, maybe? 

At 7 months old:

She loves sleeping on her left side.  We're so incredibly impressed that even though she's had massive stomach surgery (x3), she is only a little bit behind in milestones.  She mastered the art of rolling from back to front, but stops short of being on her belly because she hates it. 

She loves sticking out her tongue.  Like, 90% of the time she is awake, she is sticking her tongue out, blowing bubbles, and smiling all at once.  She must be figuring out how to use the thing.  And when we are close to her face and stick out our tongues, she immediately tries to grab them.  (Don't worry, we don't let her.)

She is becoming increasingly quick at reaching for things in her vicinity, even if we just bring something near her for a second.  Especially things that she should not be grabbing.  Like her g-tube extension, my hair, syringes, dog hair.  She even has mastered the art of taking off the arm restraint that goes on when she's hooked up to IVs.

She giggles regularly.  It used to be a once in awhile occurrence.  But the past couple weeks she has increasingly been finding that sweet, belly laugh.  And she still has a big gummy smile - as many times as we've thought she must be teething, we have yet to see the evidence.  Here is a sample of her giggling from about 10 days ago.

In terms of eating - her entire body convulses with every bite of food we try to feed her.  She surely developed an aversion to anything being in her mouth - from being ventilated, having her mouth brushed out with medicine twice per day, and being suctioned a lot in the hospital.  But we continue to torture her try with her.  Almost everyday we try some solids.  The whole bottle thing - she has totally refused.  So oral therapy said to skip it and move onto something she does not have any bad association with.  Hopefully, one day it will just click.  Although she is not interested in eating much, she loves watching Ian and I eat or drink.  She stares intently and licks her lips.

And most of all, Luca is happy.  She is incredibly happy.  It makes me smile in awe to think that through it all, she is one happy baby.  We hear over and over again at the hospital that she is such a pleasant little girl.  She really only cries if someone is not with her, or if she is ready to fall asleep. 

And mama and daddy have survived 7 months - and are even more madly in love with our little girl each day.

Marked with a heart

I am so sorry I went missing again - Luca was re-admitted on Thursday and we were just discharged today!

I do not think I have ever told you about something that sets Luca apart.  When she was born, like most babies who have just been born vaginally, she had some yucky stuff dried on her body until she had her first bath.  There were several splotches against her skin.  We did not really pay attention to this one in particular, thinking it would wash away. 

We opted to bathe her in our room a few hours after birth (something I highly recommend doing).  Sometime during that first day, we noticed a spot on her side.  It must be a birthmark, we thought.

You can see it here in one of the first pictures of her (notice how light in color it is).  It is located a few inches to the right of her right hand.

Then she went and got sick.  While we watched her for the next couple weeks, laying practically lifeless, we noticed lots about her.  She was naked except for a diaper for about 2-3 weeks.  When all you can do is sit and stare, you notice every single detail.  I memorized the way her nose curved into her cheeks, the shape and texture of her eyebrows, the way her lips form the most perfect pout.  We also noticed just how prominent that birthmark was.

And as time has passed, we have realized how special that birthmark is.  Little did we know when she was born, that she would need a liver transplant.  Little did we know that that birthmark that we stared at for so long, just so happens to be located right on top of where her liver is.  And even more incredible, is the shape.

It is a perfect heart. 

Then, we heard from others that in this picture, it looks like a heart, but it also can be an angel.  If you look at it, on the left are the angel's head and elbows, and on the right are ginormous wings.  If it is an angel, she must have needed big wings to carry Luca through this.

Either way, a heart or an angel, it gave me comfort when I was sad or worried.  I took it as a sign that she was going to be okay.  That it was there for a reason.

We were curious about whether her surgeons would have to cut through it for surgery.  We learned that they would not because this type of birthmark would bleed a lot.  So it still sits, perched on her side, right on top of her new liver. 

We have been told that the birthmark will eventually fade and go away.  I would be lying if I am not a bit sad at the thought of losing that perfect, beautiful mark.

(picture taken by my sister.  yes - that is her actual birthmark!!)

Some things don't change

Some things haven't changed since Luca's transplant.  We still talk a lot about her poop, toots, pee, spit up, throw up, boogers. You know, typical mom and dad talk.

Her first night back home in 2.5 weeks, she slept beautifully.  She was asleep by 9pm, and woke up at 8:15 this morning.  Not one peep from her.  We fed her through her g-tube at 4am and Ian thought she might need a diaper change.  But she normally wakes us up when she has a bad diaper so he figured he'd wait until she let us know.

Well, at 8:15 he snuck into her room to feed her via her g-tube, and found a smiling baby.  He looked down to see that her woombie was wet.  As were the sheets underneath her.  First thought - her g-tube medicine port opened up and the extension wasn't clamped, which must've leaked all her stomach contents out.  But upon opening up her woombie, the extension was clamped just fine.  Then, one glance at her white pajamas clued him into what the problem was.  The BIGGEST poop explosion ever known to parents.  He called for my help.

I walked in and bursted out laughing.  One positive of having medical supplies around - we have gloves in multiple rooms.  On went our gloves to handle this mess.  It was down both legs, up her back, up her front.  POOP EVERYWHERE.

She laughed her way through the cleanup, seemingly quite pleased with herself.  She came home from the hospital with a PICC line so she can only have sponge baths.  Do you know how horrible sponge baths are at cleaning poop covered babies?  Well, just to give you an idea, it took us about 1/2 hour to get her totally cleaned up.

She was a big pooper before her transplant.  Some things never change.

Happiness

Happiness is pushing the stroller out of the hospital, with your baby in it.

Happiness is putting tons of bags in the car and breathing a sigh of relief when you get in it, and hear your baby cooing in the backseat.

Happiness is doing a dance when your husband hands you the carseat through the front door, and your baby has the biggest gummy smile for you.

Happiness is not letting go of your baby once you get her in the house, until finally, her eyes can no longer stay open and she's ready to go into her crib.

Happiness is listening to the gentle hum of your baby's sweet breaths through the baby monitor.

We are home from the hospital (again).  Happy.