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.

Hospital day

We had an early start this morning.  Luca is scheduled for a sedated CT angio and EGD (scope) today.  First, we have labs, and then off to the sedation team we go.  We had to cancel these procedures about a month ago due to her ongoing congestion issues.  She has been cleared up since they gave her a round of antibiotics, treating the congestion like a sinus infection.  And it worked.  Until Saturday, when she started with cold symptoms.  Sigh.  It seems as if we cannot go more than a couple weeks without Luca getting another cold.  This winter has been full of snot, sneezing, and coughing.  In other words, disgusting.  Ah, toddlerhood.

It is likely that her procedures will be canceled today.  Another sigh. I will know more once sedation looks and listens to her.  I hate putting these procedures off longer, but obviously putting her under sedation when she is congested is a no-go unless it is an emergency (this is not).

Either way, between little girl being NPO (no food or drink) in case she does end up having the procedures, and also that she needs labs no matter what, means we are in for a hectic day for sure.  While Ian takes Luca for labs, I am heading off to another location at the hospital to meet with a member of child life to practice my speech for an upcoming event for them.

Busy day ahead.  Praying for everything to go as needed and as smoothly as possible.

Day 4: Liver numbers

As you know, Luca had several complications following her transplant.  They included a massive bleed from her hepatic artery which required surgery to fix it 5 days following her transplant.  Then, the following day the hepatic artery clotted and she required another surgery to remove the clot.  When her surgeon came out of that surgery, he gave us the news that likely the liver would not recover from those two injuries and she might lose the liver within that week, and that if the liver did recover, she likely would have biliary issues because the bile ducts can not repair themselves like the liver can. Miraculously, her liver did recover but he was right about the biliary issues.  Those pesky ducts had major issues that landed us in the hospital for too many days in 2011.  Because of those complications, we were told that she will likely need to be re-transplanted sooner than later because this liver will likely not last as long.

We were blessed that finally, her bile ducts worked enough for her biliary drains to be removed in December, and (knock on wood) she has been okay since then.  All the while, we have been watching those liver numbers carefully, never knowing when they will turn south.  They have been going up and down, up and down, down and up since transplant.  Specifically, her AST and ALT have been just out of the normal range for over a year.  Her GGT and Alk Phos have been way abnormal since her bile ducts suffered the injury - but we are told that those numbers cannot be depended on well after the bile ducts suffer an injury.  Her total bili and direct bili have been normal since her drains were placed, and have stayed normal even after the drains were removed.

Friday she had labs.  Friday afternoon our nurse coordinator emailed me her lab results and I cried happy tears when I saw these numbers:

AST                              33 unit/L                   3-34
ALT                              33 unit/L                   15-41

AST and ALT - two main numbers that tell us how the liver is working, are normal.  It in no way indicates that her liver is going to last her forever - but for today, I am so grateful.  It is a sign that her liver is happy for right now.  And for that, I close my eyes, and say out loud, Thank you God.  For this happy news - for some stability that we all so desperately need.

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.

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.

First transplantiversary

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

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

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

I held L tight to my chest and rocked her, her head on my shoulder.  Then, the curtain opened and a nurse was standing there.  She said "I know there are rules about only immediate family with the patient, but this is a special circumstance."  Behind her, she had brought all of my family and friends to be with me for those last few minutes.  I sat in a chair while everyone surrounded us.  All those smiles from the above pictures were gone at this point - I was so choked up and scared!

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

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

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

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

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

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

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

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

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

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

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

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.

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. 

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!

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.

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.

Liver Transplant Updates

Hi all - Both my loves are currently in their operating rooms.  All updates will be made on the caringbridge website.  Thank you all for the well wishes!

http://www.caringbridge.org/visit/lucamariethomas