Things I look forward to

After 8 days in the hospital, we came home on Thursday.  Our weekend was full of rest and snuggles with L.  She still has quite a bit of recovering to do at home but she is certainly recovering better in the comfort of our home.  And besides of the obvious things to be grateful for since being home (oh you know, L being well enough to come home, surgery going well, labs going in the right direction), these are a few things that are a little less obvious.

1. Not wearing a bra.  Seriously.  Wearing a bra straight-through for 8 days becomes very uncomfortable.  But with nurses/doctors/techs coming in and out of L's room at all hours means I wear a bra the entire admission.  Being free of a bra is something I was so looking forward to when we came home.
2. Showering.  I am embarrassed to admit just how many times I showered while we were admitted.   8 days admitted. 3 showers.  Gross? Yes.  But showering in my own shower with delicious smelling products for more than 5 minutes feels truly incredible.
3. Shaving.  Enough said.  My legs feel amazing.
4. Eating together.  While inpatient, we were typically rushing to eat and even some of the time we had to take turns leaving L's room since she was not allowed to eat, and she also couldn't be left alone.
5. Sleeping in a bed.  Ah, so glorious!
6. Sleeping next to my hubs.  I do not sleep as well without him next to me.
7. Having caffeine whenever I need it.  We go through a lot of caffeine while in the hospital but it requires one of us leaving to go get it from somewhere.  I love being home to have coffee/tea at our disposal.
8. Quiet.  It is so loud at the hospital in a sense that we did not go more than two hours without someone coming in and out of our room.  It was a wonderful weekend of quiet in our house.

Preparing for a hospital admission

I have been getting quite a few questions about our preparations for a hospital admission that is to be more than a night or two.  I thought I would take this post to tell you about what we do in preparation for our hospital stays.  This is the compilation of non-emotional preparation (because that could be a post in itself).

1.  Lists.  I have to mentally start preparing a checklist of things to take care of and pack as soon as I know about her admission.  Think about all of those errands and packing you have to plan for when you are going on vacation.  But then think about how much preparation you would need if you were going to be stuck in the hotel room without room service for the entire vacation.  Oh and you might have to sleep on the floor and will not have much access to showering.  That is kind of how it is at the hospital.  We have to plan for food and clothing and things to occupy us and L.  We have to think about comfort items for all of us.  We have to pack anything and everything we might possibly need because leaving L alone is not a possibility.  She has wonderful nurses and while she was a baby we used to leave without a problem because she was SO used to her nurses back then, things are different now and even escaping for a few minutes is out of the question.

2.  Laundry.  We get all of our laundry washed.  All of our bedding.  All of L's stuffed animals and blankets.  I want everything clean before we leave so things are ready for our arrival back home.

3.  Clean house.  We do a huge cleaning of the house the weekend before we leave.  It helps us organize everything leading up to the packing process and also ensures that the house is in good shape for however long we are gone.

4.  Grocery shopping.  We do a special trip for snacks and food we can keep in her room at the hospital.  Lots of granola bars, nuts, less-perishable fruit, drinks, etc.  We want to be able to eat something quickly in her room so we can stay energized and be there for L.  We also buy lots of easily digestible foods for L.  Things like cheerios and cereal bars and apple sauce pouches.  All things that she loves and can eat on the first day she will be allowed to eat again after surgery (probably post-op day 3).

5.   Pay bills/clean mail.  We need to make sure any bills that might come in while we're gone are paid.  We also know that when we arrive back home, we will have a stack of mail waiting for us to sort through.  It makes it easier to come back to that pile if we are up to date on all previous mail.

6.  Pack.  Lots of different types of packing.  We need to pack the obvious (clothes, toiletries, etc.).  But we also need to pack toys, food, a sleeping bag, pillows, blankets, and meds that Ian or I might need while there (tums, advil, cough drops, vitamins, etc.).  We also pack our camera and charger.  Finally, we have to pack certain meds for L.  While the hospital obviously provides her meds while she is inpatient, sometimes it takes awhile for the pharmacy to get her meds to us when we first arrive so we typically have to bring a dose of each of her meds so we can stay on schedule.  I also will pack my school things to stay on schedule with reading.

There you have it.  Lots involved with a planned hospital stay.  Obviously this list goes completely out the window if your hospital admission is unplanned.  But this is typically the process we go through to be ready.  At least physically ready.  The emotional side, well, I don't know if you can ever be ready emotionally.  Hope this provides clarity!

Little girl. Big things.

It has been a busy few weeks.  We have had two hospital admissions since September.  I have a busier semester than the previous two have been.  Our weekends have been filled with birthday parties, get-togethers, and housework.

And Tuesday we had a meeting with L's surgeon.  On Wednesday, we will head to the hospital for a longer stay.  L will be undergoing a pretty major surgery on Thursday.  And if the surgery does not work, she will be relisted for a new liver.  Oh, and the likelihood of success - about 50/50.

Sigh.

The news was pretty much what we were expecting so it did not feel like I had been punched in the gut upon hearing it.  But yesterday the emotions of it hit me.  I found myself crying on my hour ride home from school.

We have had a taste of normalcy for the past 1.5 years.  Sure, things are never really completely normal in our life.  There are meds and frequent hospital visits.  But she has had normal kid experiences too.  Playdates and birthday parties and roadtrips and swimming and school.

All of that makes this surgery that much harder.  I am sad that she has to go through something so major yet again.  I am sad that so much rides on the success of this surgery.  And also - there is a lot of fear.  Fear of what could happen.  Fear that this may not work.

Do you know that when I tell her we are going to Georgetown, she points to the vein in her arms to ask if she needs labs?  One word, Georgetown, and she knows what that means.

Or that she knows the difference between us saying "just labs" or "yes you'll need an IV"?

Or that she knows where to push on her stomach when I tell her the doctor needs to feel her liver?

Or that she knows what to expect when I tell her we need pictures of her liver?  She knows it means an ultrasound and she will need to hold still for at least 1/2 hour.

Or that she knows as soon as she sees a medical face mask (for oxygen) that she is about to be put to sleep?

She is wise beyond her years.  She is just a little girl.  But her knowledge of her body and anything medical is astounding.  It shouldn't be this way.  But it is, much like it is for any child who has experience with the medical world.

I am grateful that we have faith in her team.  Her surgeon is excellent.  The doctors and nurses caring for her are incredible.  While I hate that she has to go through this - I am grateful that we have this team.

We are praying that things go beautifully with this surgery and hospital stay.  That her body heals well.  That she is back to her happy, feisty, silly self quickly.  She is just a little girl.  And she deserves to have all of those experiences that come with it.

(My little tiger, being a little maniac.)

Two steps forward, one step back

Home after a two night stay in the hospital with L. I had a total meltdown yesterday morning.  L is having the same complication she had for a year following transplant.  It is so hard to have us back there in that position with complications, after having over 1.5 years of no major complications.  Life had begun to take on some normalcy.

I am disappointed and sad that she has to go through something else.  But it is different this time too.  She is more aware which makes it both easier and harder.  Easier because she can kind of ignore that she now has a foreign bag attached to her body.  Harder because she is less tolerant of being in the hospital, going through procedures, getting poked for labs and IVs.

There was talk of putting a PICC line in since she will need repeat procedures in the coming weeks and months.  But for now, she is PICC free.  I imagine she will end up getting one during one of her next visits.  They got an IV in on the 6th try this time, and her veins certainly will not continue to handle that for long.

The phrase repeated this entire visit, "this ain't our first rodeo."  We've been through this exact issue before.  We have the knowledge now to know what works with Luca and these procedures, and what has caused issues in the past.  We know what worked last time to fix it.

I have faith in her team.  The interventional radiologist is the chief and is excellent.  Her transplant team is experienced with this and knows L well.  The nurses...oh the nurses.  They are simply wonderful and it feels so nice to walk into a place we do not want to be, and see their faces.

Happy to be home today.  L has recovered from her procedures beautifully.  She is giggling and playing normally.  She is running around normally.  I needed to see that today.  To see her bounce back, despite what she continues to go through.  It helps me bounce back too.  She continues to teach me.  And for that, I am so grateful.

Compassion

"No matter how experienced you become in your profession, never lose compassion."

I wrote that on facebook yesterday.  What prompted that was a series of mishaps regarding Luca's care.  Let me back up and start from the beginning.

I realized very early on that the medical profession is a unique one, and that the people in it are for the most part, amazingly talented, courageous, and warm.  There have been a few exceptions to that but we usually take it with a grain of salt and move on.

Trusting my daughter's care and health into a team's hands is not something I take lightly.  When you have a child that has a "team", it typically means you talk to those doctors and nurses more than some of your own friends.  They become a sort of family in a way.

Recently, the team has undergone some pretty big changes.  New members have become a part of the team and roles have shifted.  Ian and I knew there would be a period of transition in which things may not go as smoothly as normal so we reminded ourselves to be patient until things smoothed out.

Then, a few things happened that made the mean mama bear come out of me.  I became extremely upset with some miscommunication and lack of communication on some pretty important things for Luca.  I was angry.  I was upset.   I knew these things needed to be addressed but knew it had to be done very carefully.

Ultimately, I ended up having a very open and candid conversation with one of her team members and the conversation went beautifully.  The bottom line is that compassion, on my part for the situation her team is in, and on their part, for our role as her parents, allowed that conversation to happen in a manner that will benefit Luca.  It was mature, caring, helpful.  After all, I reminded them that at the end of the day, our goal as her parents and as their team is to provide the best care possible for Luca and that can only happen if we all are working together.

The medical team is full of human beings that are not perfect.  There will be mistakes.  Hopefully, minor ones like what we have experienced.  But if everyone can approach one another with compassion, the working relationship can continue to grow and improve.  As much as I wanted to call and yell and complain, I knew that it would not help anyone.  It would not help me advocate for Luca even though it might make me feel a bit better.  Her team would not learn from it and it may have even pissed them off.

Compassion.  A beautiful thing.  Powerful.  Never let go of it.  It can make or break a situation.

Tubes in

Early Friday we went to Georgetown for labs, and then to same-day surgery center for Luca to have tubes put in her ears.  Super common procedure - lots more involved when you are a transplant patient.  Here is what the day was like.

She wanted to bring her baby's stroller, so she walked in on her own.  (It was still dark - it was THAT early.)

We arrived to same-day surgery and they had her put on this awesome outfit.

After they checked her vitals and went over things, she was off to the playroom to pass some time.

When it was time, I got suited up in an equally awesome outfit while they gave her some "happy juice" that made her completely out of it.  One last picture, then I took her to the OR with her team of people (seriously, there were over 10 people for this quick procedure).

She stayed on my lap while they put her out and then after a transfer to the table, I left the room.  (I love that they allow me to stay with her in a comfortable position until she is out, but no matter how many times I have seen her go under anesthesia, I still hate it and get choked up every single time I leave the room.)  They were going to just use the mask for the quick procedure, but because of her recent vomiting episodes they consulted and decided to put an IV in, intubate her, and put her fully out for the procedure.  Other than that change, things went as planned.

The intubation and IV placement probably took longer than the tubes being placed in her ears - but the total time was about 35 minutes probably.  Her doctor found a bit of fluid but nothing major.  Then I was allowed to go to PACU where she was screaming her head off for the nurses.  I held her and sang to her.  She dozed off and on.  They put us in a wheelchair and took us back to the surgery center where Ian and our family was waiting.  She took naps on each of us and then it was time to head home.

But she did not want to be carried out.  Nope - in pure Luca fashion, she wanted to walk out on her own...the same way she walked in. Pushing her empty baby stroller of course.

The rest of the day included lots of fussiness.  We took her outside to get some fresh air.  Inevitably, being outside calms her.

She was exhausted from the day (and so were we!) so we all went to bed early.  Since Friday, she has been sleeping great but still seems a bit uncomfortable with her ears.  Hopefully, time will heal things and she will be feeling back to normal in no time.

Today...

If you live in the DC area, tune into 107.3 today.  They are doing a radiothon at Children's National, where Luca was treated in the NICU.  I actually will be speaking on-air around 2pm.  We love Children's!

Hospitalizations in 2011: the Numbers

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.

A first cold

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!

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!

A typical day in the hospital

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

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

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!

When someone has a loved one hospitalized: Part II

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? 

When someone has a loved one hospitalized: Part I

Having a child who is in and out of the hospital has brought out the best, worst, and awkward things people have said and done to show their support.  Having never been through something like this before, I can think back to situations when I was on the other side, and now think how I said some of the most awful things to help support others when they were going through such a roller coaster.  I thought it might be helpful to share some positives and negatives so that others, who have not been through a similar situation, have some ideas.

This Part I will be about things to say, or not say to help.  To see Part II, click here.

1.  Make contact with the person.  Then once you've made contact, continue making contact.  You may think "they have a lot going on, they do not want to hear from me."  Not true!  It is true that we have tons going on, but it means so much to get notes, emails, cards, voicemails, texts from people.  Being in this situation, it as if our worlds are on hold.  It is hard to see that everyone else's lives are moving forward - people are enjoying going out to dinner, going on vacations, going shopping, even grocery shopping - so to hear from someone makes me realize that although their lives are moving ahead (as it should!!), they still can take a step back and realize that our lives are on hold.  Call!  Email! Send cards!  I would recommend limiting text messages.  It is really hard to keep up with them.  Going along with this, it is okay to not have the right words, or not understand what to say.  TELL THEM THAT!  It is okay for people to say to us "I really do not even know what to say right now." 

2.  Validate the person's feelings.  Being in this type of situation means having ups and downs.  I cannot tell you how often, when we are having a down moment, someone says "but look at the bright side," or "you have to stay positive."  I know deep down people are trying to help.  But it is okay, normal, healthy to mourn things.  Validate their feelings.  It is okay to say, "I am so sorry this is happening."  It is okay to say "well, this sucks."  It is okay to say, "this is not fair."  Because at the end of the day, nobody should have to go through this.  Ian and I have said over and over again, that no matter how much we dislike a person, we'd never wish this on them.  Do not try to brush their down moments aside.  They are very real, and part of this journey.

3.  Give them the benefit of the doubt.  When you know little about what the person is going through, ask. (See 4).  And do not assume things.  When Luca was discharged from the hospital, people said, "I heard she is home from the hospital and all better.  Congrats!"  While their intentions were good, they clearly did not understand the severity of Luca's disorder.  My feeling is if you are not going to look into, or ask questions about what the person is going through, do not assume.  Give the person the benefit of the doubt by assuming they are still going through a lot.  The worst that can happen is that they correct you and say "oh it isn't that serious" or "oh she's all better now actually." 

4. Ask questions.  This goes along with #3.  It is great for people to ask us questions.  Considering how much information there is about this, it is understandable to have questions.  And honestly, it helps us sort through information if we share it with someone else.  It is okay to ask lots of questions - about the disorder itself, about prognosis, about our daily routine.  It also shows that you are actually interested, and care.

5. When you say your prayers are with someone, mean it.  I used to say I was praying for someone, then go about my day without much thought about it.  Now, when I say I will pray for someone, I immediately close my eyes, and do exactly that.  If you say it, mean it.  Also - the phrase "my thoughts and prayers are with you" is totally overused.  The intention is great, but seriously, as a community we need to come up with a better phrase.  When Luca was in a coma, people said this nonstop.  Then finally someone's response was, "well, this totally sucks."  It made me laugh.  Some people might think it was insensitive - but it was real, and totally the truth.  It felt good that somebody else felt the same way we did.

6.  Caution using the phrase: everything happens for a reason.  I know people believe this.  And even I do to an extent.  But when your child is suffering, when you are suffering, it is about the last thing you want to hear.  To hear that there is a reason for your child to suffer - quite frankly, in that moment, there is never going to be a good enough reason to justify your child suffering.  While I firmly believe we were chosen to be Luca's parents, and I will make good of a very bad situation, I do not like hearing that Luca has this disorder for a reason.  It does not make sense to me why some people get to have healthy children, while others do not.  I just would not recommend saying this a lot when someone is right in the heart of hell.

7. Share what is going on in your life while practicing sensitivity.  Ian and I expect other people to be having fun in life.  Everyone's lives should be moving forward!  We like to hear about what is going on with you.  It makes our lives feel a little more normal if our friends reciprocate after we've given them a laundry list of everything happening with Luca.  That being said, be cautious about how you say it.  If you are going to complain about something going on in your life, or vent about it, do it cautiously.  Example: DO say: "I cannot believe my baby has to get a shot today.  I don't know how you guys watch Luca getting IVs in her scalp and have to give her shots twice per day.  It breaks my heart and we only have to get a couple shots every couple months."  DO NOT SAY: "I had to leave the room because I just cannot stand to watch her.  I was sobbing and just cannot believe my baby has to endure that."  Get the point?  We totally expect people to vent and we like hearing normal parent worries - but show a little compassion at the same time.

8. Do not compare unlike situations.  When I was explaining how scared I was of losing Luca, I cringed when I heard the response from someone.  Response was something about totally understanding because she is afraid of losing her 97-year-old grandma who had recently undergone surgery.  While it is incredibly scary and sad to lose anybody in your life - comparing my 6 month old daughter to someone who has had a long, happy, healthy life is not right.  While I understand the person was just trying to relate, it is okay to not know how to relate. 


There you have it.  My recommendations of things to say or not say.  At the end of the day, even when someone has said the absolute wrong thing, I appreciate that they are saying anything.  Most of the time, a person's intentions are great, but wording and follow-through are not as great.  We recognize that people are trying, and that is what matters!

What would you add?  Have you ever been through something where people say the absolute right or wrong thing?

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.

Mama Bear

When we first arrived at Georgetown for Luca's transplant, I was nervous about the team.  Not because they aren't competent.  They are.  Not because they aren't brilliant at what they do.  They are.  But because we had gotten so accustomed to Luca's team of doctors and nurses at Children's.  We had developed great relationships and trust with Children's.  We knew how things worked at Children's.

I was nervous for the newness of it all.  Of getting used to a new system.  New doctors.  New residents, interns, nurses, staff.  New facilities.  Building new relationships.  Building new networks.  Learning to let our guards down and trust these new people, who we barely knew, to make life and death decisions and recommendations for our daughter.

Trust is not something I take lightly.  I am an outspoken person in general.  But even more so (if that's even possible) for Luca.  I will advocate for her until I am blue in the face and out of breath.  I will fight and finagle my way through the system to get what is best for her.  I will suck up to the right people.  I will do whatever it takes. 

You learn very quickly that being nice goes a long way.  Especially with the nurses.  You learn that staying on top of her numbers and care, being present everday, puts a bit of pressure on everyone to pay attention.  You learn that sometimes you have to be sugary nice to get things done.  You learn that being understanding, or even when you are not feeling very understanding, that pretending that you are can do wonders.  You learn that sometimes, it is okay to stand your ground and push, or even be a little (or a lot) stern.  You become the world's biggest bitch in a matter of seconds if needed.

It sounds manipulative.  And maybe in some ways it is.  You do not mean to be mean.  But when a little girl, your little girl is staring back at you and you have every reason in your gut to know something she is telling you, you act on it.  You move your feet quickly to get things done.  You move with purpose and your head becomes clear.  Dignity goes out the window.  You let words out of your mouth that have such meaning.  You are short, concise, strong.

Having a child with medical challenges forces you to become a strong mama bear.  Cuddly and nice, but with very sharp claws.  Sure, all mamas have those claws, but they likely won't be used so soon unless you have a reason to.  By now, my claws are sharp.  I've learned how to use them.  When to use them.  Why to use them.  You only develop these skills from one thing: practice.  And I certainly have had practice.  Too much practice.

That does not mean you like using those claws.  It is not fun always needing to watch and advocate.  It is exhausting working the system, while still trying to maintain part of yourself and being kind.  It is a delicate balance that I am working on maintaining.  But I will do it.  I will do just about anything for this precious, beautiful baby of mine.

Steroids make babies crazy

I had been planning on getting back to blogging...but then the little lady went and got admitted into the hospital yesterday.  She totally went and messed up those plans for me. (Please sense the sarcasm there people - don't leave comments or emails about that comment).

She has elevated liver numbers.  Which could mean lots of things - but in her case, likely means either rejection or a biliary issue.  Honestly, I have no idea what is better less bad for her in the long run.  So we're just hoping that her body responds to 48 hours of IV steroids, regardless of what the issue is. 

Although can I tell you how excited I am she's on IV steroids?  Talk about making a baby crazy.  She acts as if they've hooked her up to an IV espresso drip.  Hyper yet so, so cranky.

In other Luca news, she is obsessed with blowing raspberries.  You talk to her, she blows raspberries.  The doctor examines her, she blows raspberries for him.  You sing to her, she blows raspberries.  You walk in the room, blows raspberries.  She stops crying, blows raspberries.

[P.S. - I spilled some tea all over our laptop.  The keys are doing crazy things and it took me about 1/2 hour to write this post because I had to keep correcting it.  If I dOn'T CoRREct iT< iT loOks A LITTLE Like THiS>.  Yes, that sentence was written without hitting the caps lock key or shift key.]

That Day

I am often asked to describe what happened that day.  In the beginning.  So here it is - every detail we can remember. 
August 7th -

I go to the bathroom.  It takes me about 10 minutes just to take a pee break.  When I walk gingerly back to the bed, I mention that I think we should stay the second night.  I do not feel quite ready to leave.

I went back to sleep.  I woke up to the sound of her sweet cry.  I called Ian's name to get her so he could bring her to me.  I was still too sore to get up and down from the bed.  I pushed the buttons to make the bed more upright.  I set the pillows up on each side of me to make it more comfortable for her precious body.  As soon as he picked her up, her whining stopped.  She looked around, bright eyed.

I put her to my breast and she began screaming.  This was the story of the rest of the day.  Up to breast, crying.  Eating, crying.

Our pediatrician told us that she's a big baby - maybe she needs a supplement until I make enough.  Is she cluster feeding and not getting enough?  Is she tired?

She falls back asleep.  She must have been tired.  This is the last picture I have of her by herself on that day:

Family arrives.  One by one, people hold her.  By 2pm, she is back awake.  Crying.  I try feeding her.  In between feedings, she is passed from person to person.  Then handed back to me to soothe her.

"Try feeding her again.  She must be hungry."

I try again.  Ian holds up the blanket so I can feed her with family around.  She fusses.  Is she not hungry?  Maybe I need a lactation consultant to come and work with me - maybe she isn't latching properly.

My brother holds her afterwards.  He's talking so sweetly to her.  We're taking pictures.  "She just spit up I think."  I thought in my head that that did not seem right.  She was over 24 hours old, had eaten plenty of times, and had never spit up.  And, it had been over an hour since she last ate.

Back to fussiness.  I hold her, rock her, feed her again.  More spit up.  I mention it to the nurse.  "It is just spit up.  Babies have reflux."

Most family left by 7pm.  She hadn't slept since she woke up at 2pm.  "That's odd for a newborn" I thought.  Maybe she was overstimulated.  She wasn't fussy anymore.

We held her off and on.  I fed her periodically.  Only for her to spit up an hour or two after each feeding.  At 9pm, I mentioned it to the nurse that she hadn't slept since 2pm.  "She looks content."  Those words still ring in my ears. 

I fed her at 9:30pm.  Ian and I decided to sleep as long as she was content.  It makes me cringe knowing that I went to sleep.  I closed my eyes.  I woke up shaking uncontrollably.  I was nauseous.  I was sweaty, but felt freezing.  And the shaking...I couldn't make it stop.  I went to the bathroom and came back to the bed.  I woke Ian up and told him I didn't feel well.  Then within a few minutes, at 10:30pm, I heard her making a funny sound.  I reached up and flipped her to the side where she spit up.  Except, I knew it was not just spit up.  "Maybe we both have an infection.  I don't feel right.  Something is wrong.  And I think something is wrong with her."  I called the nurse in.  I expressed that I was nervous - that it seemed like she had thrown up, and that I, too, didn't feel well.  She took her temperature - it was lower than normal.  We wrapped her with an extra blanket.  "Get some sleep - she is content.  At 12am when I take her for her discharge tests, I will check her out.  And your shaking is all from the hormones."

August 8th-

At 12:30am, our nurse came in and took her.  I stayed awake.  I was worried.  And I couldn't stop shaking.  Ian slept.  My mind wandered and I tried desperately to close my eyes.  At 1:30am, our nurse, Lisa (I'll never forget her name), came and told me that her temperature was still low after being under the warmer for a half hour.  "She looked kind of shaky.  I went ahead and tested her glucose and it was very high.  I've already called your pediatrician and they want to get a NICU consult.  She has had more emesis as well."

I went into panic mode.  I freaked out.  I knew in my gut that something was wrong.  I never in my wildest dreams knew just how wrong that something was.

Ian said to sleep until we knew more.  He did sleep.  I couldn't.  At 2:30am, the NICU nurse came in.  "I don't feel comfortable leaving her here.  We can monitor her more closely in the NICU.  She's doing some funny things that don't seem right to me." Funny things like what?  "I think she's having seizure like activity.  The smacking of the lips is not normal."  When will we know more?  "Before my shift is over at 7am, I will come back and update you."

I burst into tears.  Ian held me.  We both cried.  We didn't know what was wrong - but we knew the fact that it had been 12 hours since she had slept meant something was wrong.

At 4:30am, the door to our room opened.  A man came in with two women with him.  He looked frazzled, anxious.  "We need to transfer your daughter right away.  Your daughter is sick.  We think she has a metabolic disorder.  Her ammonia levels are in the 400s and it is extremely dangerous.  I wish I had more time to spend with you - but I need to focus on getting her where she needs to go.  University of Maryland is expecting her and is starting to make the medicine for her."  Is she going to be okay?  "I don't know."

Those three words.  I don't know.  They haunt me. 

I turned to Lisa, when can I be out of here?  "Right away.  Let's get you ready."  They all left the room.  Ian came and held me as we both cried.  After we had a breakdown, we got down to business.  We packed up our stuff.  I acted almost instinctively as I grabbed my rosary in the process, and I started praying out loud.  I made every bargain with God I could possibly think of.  Just please, save our baby.  Desperation.  I had never experienced it before that moment.  I may have thought I'd been desperate before - but really, that was the first time I'd experienced it.  When you have nothing left, and everything is out of your hands, you offer anything and everything. 

I had given birth 48 hours ago.  The pain I had from labor was nothing.  All I cared about was her making it.

Once we were packed and the car loaded up, we arrived at the NICU to hold her one more time.  She already had wires coming from her.  Two IVs, heart monitors, a pulse oximeter.  Everyone seemed to whisper as we walked past.  If I knew then what I know now, I would've known just how serious she was by the whispers and stares.  "Those are the parents of THAT baby" is what they were thinking.

They put her in my arms.  We whispered to her to live, to please live.  We whispered how much she was loved.  I asked if I could ride with her in the ambulance.  No.  That should have been another clue as to how serious she was.

When the transport team was ready, they whisked her up out of my arms, but not before Ian and I each gave her one last kiss.

Then Ian ran to the car to pull it up.  A NICU nurse got a wheelchair to wheel me down.  I sobbed the entire way.  I don't even know what her name was.  But as I sat in a wheelchair in front of the hospital waiting for Ian to pull the car up, I sobbed my eyes out.  "This isn't fair.  This shouldn't be happening."  She agreed with me.  She rubbed my shoulder and said to allow myself to mourn the loss of what should be.  I stood up and she hugged me.

We raced to the next hospital.  As we were taking a back route, we looked up over the ramp to the highway and saw the ambulance with lights on.  We cried even harder.  The sun poured into our car on the ride there.  We were silent and crying.  We held hands.  I called every person I could think of to start praying.  I left voicemails, sobbing, asking friends to start praying.  It was Sunday.  Please go to church and pray.

We got there at the same time as the ambulance.  I walked in as quickly as my body would allow.  Our families met us there.  We got to the floor before she did.  I saw the team transporting her carrier down the hallway.  One of the transporters said "you made good time" when he saw us there.  Funny how I can remember such specific things from that day. 

We waited in the family waiting room.  We all cried - not wanting to think about what could happen that day.

Then, we started learning about what was happening.  Three words were uttered that have changed our lives forever: Urea Cycle Disorder.  In the middle of the discussion with these new doctors, I turn around to see her pediatrician.  He had heard she was transferred and came immediately.  He walked up to us.  I burst into tears.  He put both hands on my shoulders and said "I am SO glad you didn't go home a day early.  You did good mom."  And gave me a big hug.

We stayed at the hospital until about 8pm.  I was then told I had to go home - my family and Ian practically dragged me out of there.  I hadn't slept in over 48 hours.  I was running on empty.

I got home.  Without our baby.  Walking through the door with empty hands was devastating.  I got my breast pump out - I didn't even know how to use it yet.  I sat in her room and pumped. 

August 9th-

We finally went to sleep.  It wasn't long before the phone was ringing.  And it continued ringing every 30 minutes after that. 

"Remember how we said if the medicine didn't work, that she'd need to have dialysis?  Well that needs to happen."

"Our dialysis team was called in and they are not comfortable performing dialysis on her.  We need to transfer her."

"Her ammonia level is now 535." 

"We are transferring her to Johns Hopkins."

"Johns Hopkins is taking too long to get back to us.  We need to transfer her NOW.  Children's, in DC, is ready for her."

"We're calling for consent for airlift to Children's."

3:30am and they are telling me the risks of flying the helicopter.  Do we have any other option?  No.  Do it.  "We need to get off the phone now and get in the air before the fog comes in."

3:45am Children's doctors begin calling me.  Getting consent before she arrives for surgery to put a dialysis catheter in her neck, a picc line in her groin.

4:00am Children's doctors are calling about whether I want her put into a hypothermia state.  What?  "It's a trial but could limit the brain damage she suffers."  I immediately call our on-call pediatrician who we've never met.  I send her an email with the paperwork for the clinical trial.  She pages our actual pediatrician.  At 4:30am I am talking to our pediatrician, reading through clinical trial information and evidence to support doing it.  [How many pediatricians would do this?  Hardly any.  This is why I recommend our pediatrician to every person in the Baltimore area.]  He finally said, "It makes sense to do this.  All I can say is that if this were my child, I would say to do it."  And so we did.  We signed the consent forms and scanned them back to Children's.  As I was discussing it on the phone with Children's, the doctor said "Oh I have to go, she has just arrived."  I could hear a lot of commotion in the background.  "She's here."  We later found out that she was Children's first hyperammonemic (high ammonia) patient for hypothermia to be used.

She had made it there, alive.

Ian and I slept for a couple hours, as best we could, and then woke up and packed up everything.  We sat quietly on our way to DC.

We parked.  We walked in and checked in at the front desk.  We were told where to go.  We took the elevators to the 6th floor.  We checked in at the NICU front desk.  They told us what room to go to.

We walked by dozens of doors, looking in at the babies.  Most of the rooms were dark and the babes were sleeping.  We'd see a nurse here and there in a room.  All of them seemed to be private rooms - maybe just for babies that were contagious?  We finally got to her room.  It was full of machines, doctors, nurses.  It didn't look like any of the other rooms.  It was busy.  Lights on.  People barely noticed that we had entered the room.  The nurses (we would later figure out that there were 4 nurses taking care of her for the first 24 hours) did not really explain much.  They waited for her doctors to talk to us.

 She had the best view from her room.

Doctors came in one by one introducing themselves.  We felt overwhelmed by all of it.  One of the head doctors leaned over her crib as we watched her, ventilated, in a coma, and said "Congratulations.  You have a beautiful baby girl.  But I have to tell you, your daughter is sick."  I know.  "No, she is really, really sick."

During rounds, when all of the doctors and nurses and specialists come together to discuss the past 24 hours, and the next 24 hours, Ian and I were inundated.  We looked around - we couldn't all fit in her ginormous room.  There were too many people involved.  Sixteen doctors and nurses.  Geneticists, neurologists, nephrologists, pharmacists, pediatricians, social worker, case manager. 

We learned that by the time she had arrived at Children's, her ammonia had gone up to 585.  Normal range is below 70.  We were told we were lucky that it hadn't gone into the thousands.

She was on hemodialysis to clean her blood of the ammonia.  Her body was cooled to a temperature of 94 degrees to reduce brain swelling and try to prevent serious brain damage.  Her ammonia came down to a normal level within 24 hours.

What was next?  Her NICU doctor said, we wait and see if she wakes up.

The next week was a roller coaster.  But 6 days after arriving to Children's in a helicopter, she graced us with opening her eyes.  And 31 days after she arrived at Children's, we brought her home for the first time.  She was 34 days old.

There are other details to this story and about her stay in the NICU that I could go on about, but I needed to get out the process of how she ended up there and what it was like when our world came crashing down.  To this day, I firmly believe that me waking up shaking uncontrollably was some deep motherly instinct, that my body was telling me something was wrong.  I have kept in touch with the head of the NICU who acted so quickly and focused on getting Luca where she needed to be.  That nurse who we had - she did the absolute right thing in checking her out.  She was magnificent in getting us out of there so we could make it to Maryland at the same time as Luca.  And her team at Children's - I cannot say enough about them.  They will always hold a special place in my heart.

Article

Hi all!  If you haven't been following our caringbridge site, I'll give a very brief update.  Luca and Ian had their surgeries on December 14th.  Luca did beautifully until December 19th when she required emergency surgery, and then another emergency surgery on December 20th.  Since then, she has been recovering, slowly.  Ian was discharged on December 20th and has been recovering outside of the hospital.  We're hoping to bring Luca home in the next week or so.

And 2 days post transplant, I met up with a writer from the Washington Post, along with her metabolic team at Children's National Medical Center in D.C., and shared our story.  Here is the article as it appeared in today's paper.

Article in Washington Post

And because I'm obsessed with pictures our close friends took, here's one for you.