The BIG Day! (Recovery: Day #4)

Today was the day we've been waiting for!  72 hours post surgery means a lot of things... we got to take Claire's repogle, nasal cannula, and catheter out and introduce colostrum for the very first time AND having food in her tummy means she will generate more body heat so hopefully she'll be able to keep her temperature up without having to be under the warmer within the next couple of days as well.

First time eating!

Claire was slow in figuring out the bottle at first and took some "suck training" they called it ... but she finally finished it (her nurse and I both cried) AND she pooped a normal poop for the first time!!  Who would have thought that we would get so excited about poop?!  The second [and third] feedings went increasingly faster.  Although still slow, she is getting the hang of it!  We are one giant step closer to being able to go home.  Today they limited the amount of colostrum that she could have at one time so that they could see how she tolerated it (great so far!) but over the next couple of days, they will begin to increase the amount that she is getting and then, eventually, let her decide how much she wants to eat and once she is able to get all of her nutrition by breast milk alone, we will be ready for home!  It's all up to her now.

Holland

This is the second time that we've found ourselves "in Holland" and, although it isn't what we had planned for, we wouldn't trade it for anything. Our beautiful girls have touched and enriched our lives in ways that only they could and we could not feel more thankful for the incredible blessing that it has been to journey to Holland. 

Claire at 2 days old

We found out minutes after Claire was born that her doctor suspected that she may have been born with a little extra piece of Justin or I. We received confirmation this morning that Claire does, in fact, have Trisomy 21 (also called Down syndrome).  Down syndrome occurs when an individual has a full or partial extra copy of chromosome 21. This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome. For the last week, we have been absorbing as much information as we can but there is still so much to learn and, admittedly, much of the information has been a surprise to us. There is so much that we didn't know. I will be sharing some of this information in later posts so that those who would like to can learn along with us.

Already in her few short days, Claire has captivated our hearts. It is difficult to put into words but there is something so special about the way that she looks at us, the way that she smiles no matter what is taking place, and the way that she insists on pushing past all of our expectations to show us who she is and what she is capable of. We can tell already that she has something very special to offer our family and this world and we look forward to the future excitedly and with great thankfulness for this special gift that we have been given to see and experience the world in a new way and from a new perspective.  

"Welcome to Holland"
c 1987 by Emily Perl Kingsley. All rights reserved

"I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland."

Recovery: Day #3

One week old today!

We had a pretty good day today. Claire went a full 8 hours between doses of morphine and the amount of supplemental oxygen that she is needing has gotten lower and lower throughout the day!  She is still extremely sleepy and pretty fussy when she's awake but we are seeing big improvements and her swelling has gone down.  Her surgeon is coming at 10am tomorrow and we hope to be able to remove some of her "accessories" and to start feeding her at that time.  She did get an eye infection so we started some antibiotics in her eyes today.

Some of the things we've learned about Claire:
> She is a night owl!  Her most awake time of the entire day is midnight through about four o'clock.
> She loves to be swaddled but she always finds a way to wiggle out her left arm to use it for getting into mischief (mostly pulling out her tubes and pulling off her sensors!).  

Claire's board in her room, decorated by Mommy and her nurses.

> She loves to be held and is comforted specifically by pressure over her arms when they are placed across her chest.  
> She has extremely sensitive skin so we have begun a little routine of making sure to move her sensors around often, to take off any tape as soon as we can, and we've begun a little moisturizing routine as well.
> She makes the cutest little noises I've ever heard, she even made "talking" noises for the first time today, hopefully she was trying to tell us that she's feeling better!

Recovery: Day #2

Claire is still on morphine and oxygen to keep her sedated. She has lots of swelling and we are doing our best to keep her from moving so that her insides can have time to heal. These have been the hardest two days thus far, seeing her like this breaks my heart. I can't wait to see my happy, spunky girl again.


Prayer requests:
-That everything heals properly and quickly so that we can try to start feeding her on Monday.  After 8 days of not eating, she is feeling very hungry.
-That feeding goes well and that she begins to pass stool.
-My personal prayer is that Claire is healthy enough to join us for our butterfly release on Emelyn's birthday (July 7), I can't imagine our family being apart for that so prayers for that specifically would be appreciated.  Her surgeon thinks it's a possibility!

Recovery: Day #1

Claire is recovering well so far.  Because they did so much inside of her tummy today, they will be keeping her pretty sedated for the next 72 hours so that she doesn't move around and her body is allowed time to heal although she isn't cooperating very well so we've been trying to hold her still and keep her calm as much as we can.  She's a feisty one and doesn't like all of her tubes.  It's hard to see her like this.

And ... she left us her first note, "please don't touch my booty."

Surgery Updates

2:15 - Surgery went well and we're back in the NICU with our sweet girl!  Everything went just as planned and they ended up removing about three inches of her colon.  It took a little longer than expected because they also found a urachal cyst that they removed.  She has about an inch-long incision on her tummy and internal stitches as well.  She is very sleepy but the anesthesiologist assures us that she initially woke up very alert and feisty!  We will spend the next 72 hours resting and keeping her still and calm and, hopefully, we can start introducing a little colostrum on Monday so that we can start filling her tummy and helping her feel better.

12:34 - They have finished and are starting to close, the surgeon should be up to talk to us soon!

11:08 - Great news!  They've found healthy tissue/ganglion cells and are starting the pull-through.

10:30 - We just got our first update, they had to do some additional prep work in the OR and place another IV (she now has two plus her PICC line) and are starting now.

9:10 - She is in the OR.  They expect the surgery to be done around 1pm.  We hope to have another update soon in regard to the first set of biopsies.

8:35am - All loaded up and heading to the OR.

Diagnosis

Claire's biopsy results came back yesterday afternoon and confirmed her surgeon's suspicion of Hirschsprung's disease.  Her surgery for tomorrow has been moved to 9am and is expected to last two to three hours.  They will be making an incision just below her belly button and, working from her bottom, will take biopsies along her colon in order to determine which sections have the appropriate number of nerve cells and then attaching the healthy tissue to her bottom.

She has not had anything to eat since Sunday which is making her pretty cranky and she will not be able to eat until at least Monday.

Prayer Requests:
-That the surgeon discovers that only a short segment of her colon is missing the nerve cells so that we can save as much as possible.
-That she tolerates the procedure well and everything goes smoothly.  Her surgery is also complicated further because of her heart, she has a VSD, PFO, and PDA.  Because of this, she will be assigned a special anesthesiologist that specializes in pediatric cardiology and a cardiology team will be standing by.
-That she is able to recover quickly so that she can begin to eat, she is very hungry and uncomfortable.
-That introducing colostrum/breast milk next week goes well and that she is able to pass stool so that we can go home soon!

After surgery, we will have a daily dilation routine for about six months in order to help make sure that the scar tissue heals properly and will be following up with her surgeon weekly
during that time as well with visits getting more spaced if things go well.

We will do our best to update as the surgery takes place.  We are so thankful for your prayers and support.

Claire Michelle

Claire is absolutely precious, she has truly captivated our hearts and we are more than in love. She is so sweet, has perfect skin and features, and makes the most adorable little faces. Every single time she looks at me with her dark blue eyes, my own well up with tears of joy. We are so, so blessed.

It has been very busy here and we haven't yet had time to eat, sleep, or think so we apologize for not responding to your messages, we have read every one and are so thankful to have so much love and support from so many. It looks like we will be staying in the NICU for about 3-4 weeks, we are still learning a lot about Claire. She is scheduled to have a pretty major surgery on Friday and has had quite a few traumatic procedures already in her two days of life - we've been going nonstop day and night so far.

She will be just fine overall but we will be adjusting to a "new" life that involves lots of doctor visits and therapy for the long term and are trying to take in all of the new terms, routines, and faces of her long-term care team. We are just so thankful to have her here with us and to have the support of really phenomenal doctors, nurses, and specialists.
I know that we didn't give a lot of details, we don't have many. There are still lots of unanswered questions and test results we are waiting for.

Because we are so busy here, our sleep schedules are all over the place, and it is important that Claire is in a very quiet/dark room, we are asking that messages and phone calls please wait at least until things settle down.

We also know that many of you will want to know what we need, we just ask for your prayers - for Claire, for guidance for the doctors, for understanding on an appropriate level for Anna and Levi, and for peace for all. And if you happen to see Anna and Levi around, please give them a hug (and a little extra grace) for me, I miss them terribly and watching them process all of this from afar is difficult.

We promise to update as we can and can't wait to start introducing our little miracle to all of you!! 

She's Here!!!

Claire Michelle. 6/22/14. 12:44pm. 6lb 8.8oz. 19.25in.