The Amazing Adventures of Claire Bear: June 2013

So, I obviously did not meet my (self-imposed) deadline of posting a detailed update last week, but that is only because it is hard to find the time to blog now that Claire is home (yes, I am already blaming things on my daughter. Sadly, I am sure it will become a trend from here on out.).

As I am sure most of you know by now, Claire ended up being discharged from the NICU on May 23, 2013, exactly a week after she was born. Apparently she took the "2-3 week minimum" as a challenge and decided to beat it. [I am pretty sure that Claire gets her competitive spirit from her father.] Every day since then has been an unparalleled joy as she continues to amaze us at each turn.

But, I promised a more detailed update than that, so here goes:

Claire was born at 9:18 a.m. on Thursday, May 16, 2013 via C-section. She weighed 8 lbs, 4 oz and was 21.25 inches long. She cried within seconds of birth, and it was the best sound EVER. Seriously, I know that sounds trite, but it is true, mainly because a lot of "O" babies are born with underdeveloped lungs due to the lungs not having the pressure of other organs on them (which apparently assists in their growth) ... so Claire's wail meant that she was already ahead of the game. She was put on a nasal cannula right after birth, but on the lowest level, and only because she had a little fluid in her lungs. The cannula was removed on Day 1. Claire also had a suction tube running through her nose down to her stomach which was removed on Day 2.

Claire's "O" contains both a part of her liver and a part of her bowel - we already knew about the former, but were unsure about the latter as it was hard to determine prior to birth. Although it is considered "giant" due to the presence of her liver, it is actually quite small in comparison to the rest of her abdomen. I think Bo put it best when he compared it to a cue ball. Additionally, about 3/4 of Claire's "O" was covered with skin at birth, which is HUGE considering that most omphalocele babies just have a membrane - which is subject to rupture - covering the "O." Claire just has membrane at the very top, which has hardened and is slowly getting covered with skin day by day.

[UPDATE: Time for the truth - I actually started drafting this post two and a half weeks ago. Since then, Claire's O has continued to gain skin coverage. Right now, only a small portion - about the size of a silver dollar - of membrane remains.]

A PICC line was inserted on Day 1 so Claire could be fed via IV; however, I was allowed to start nursing her on Day 2. Much to everyone's surprise, Claire jumped right on the nursing bandwagon (she also likes her bottles), so her IV intake was lowered each day until the PICC line was removed on Wednesday the 22nd.

Claire started out in an isolette (like an incubator), but was moved to a crib once it was determined that she could regulate her own temperature.

Dr. F taught Bo and I how to do the dressing changes for Claire's "O" on Monday, May 20th. Right now, her "O" is first covered with an ointment - Xenaderm - to keep the membrane from drying out, then covered with Xeroform, which is a medicated gauze to prevent infection. Then we wrap the "O" in Kerlix (plain gauze bandage), and finally with the ACE bandage for compression. The dressing changes occur once a day, every day, and, for the most part, Claire tolerates them well. Bo typically handles the application of the ACE bandage as I am typically afraid that I will wrap it too tightly.

Claire has had three doctor's appointments since discharge - one (June 7th) with Dr. F, who was happy with her progress and gave us the go ahead to give Claire regular baths (she had just been wiped down with a wash cloth prior to that time to avoid getting water on the "O"); and two (May 24th and June 14th) with Dr. M, her pediatrician. At her last appointment, Claire weighed in at 9 lb., 6.5 oz, and measured 22 inches. Her next appointment with Dr. F is on July 2nd, and she has her two-month pediatrician's appt (shot time - yikes!) on July 17th.

At this time, we still have not discussed any date for closure surgery; instead, the plan is to continue the compression wrapping until everything has moved back inside. After that point, we would discuss surgery for muscle closure to bring Claire's abdominal muscles back together. The current course of action is working perfectly thus far, and we have no intentions of changing it.

I think that is it for now. I was considering posting pictures of Claire's "O" in case anyone was interested in seeing what exactly it looks like, but some people might find that a little too graphic. Instead, if you would like to see it, please do not be afraid to ask me to e-mail you pictures as I am more than happy to do so. Right now, I only have some pictures from a couple of weeks ago, and it has changed a LOT since then, but I intend to start taking more pictures to keep track of the progress from here on out.

Finally, a huge THANK YOU to our moms, Gail Foley and Gail Huber. As owners of our own business, there really is no such thing as maternity leave, but Claire is not eligible for regular daycare right now because of her "O." Fortunately, our moms have been more than willing to make the trek to our office to watch Claire for us while we work. I don't know if I can adequately express how much this means to Bo and I. We are extremely lucky, and eternally grateful.

Since I can't think of a good way to end this post, I will leave you with some pictures of Claire Bear: