Surgical Update

Happy Monday, everyone!  I hope everyone had a good weekend.  Ours was busy, but good. Claire hung out with her Gigi and Papa (my parents) on Friday night while Bo and I played kickball, and then Bo, Claire, and I spent the majority of Saturday catching up on work.

What?? It's hard work looking this cute.

Claire also got to spend some time with her Uncle Chris and Aunt Kati this weekend:

As you can tell, our little Bear is getting bigger and bigger every day!  She is now solidly in her 3 months clothes, and enjoys playing on her playmat, and sitting in her bouncy chair and Bumbo:

Finally, I don't have any pictures,  but Claire started daycare on August 26th, and she has done really well with the transition.  Bo and I really like the ladies taking care of her, and her BFF (Carter Anne, the daughter of our close friends, the Brammers) also goes there, so it is a good fit.  Although we loved having Claire stay home with either my mom or Bo's mom, we knew it couldn't continue forever, and we were lucky to get a spot in the daycare when we did (there are 17 other babies on the waiting list!).

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Okay, I know the  title of this post is "Surgical Update," and I have talked about anything but, so here goes:

Today was another appointment with Dr. F.  He is still impressed with her "O," and has given us the go-ahead to increase the pressure of her compression wrapping to further things along since we seemed to have reached a plateau.  Her wrap now consists of the following steps: (1) a wad of gauze (about the size of a golf ball) is placed on top of her "O" and used to press it entirely inside her abdomen.  (2) Claire's abdomen is then wrapped in Kerlix to provide a little extra cushioning (although Dr. F. said that we could skip this step if we wanted).  (3) Her abdomen is then tightly wrapped with the ACE bandage to keep everything in place.  

Claire appears to be tolerating the new wrap (well, at least for the 2 hours it has been on).  I dropped her off at daycare after the appointment and told the ladies about the new wrap so they can let me know if she acts extra fussy or spits up more than usual.

Our next appointment with Dr. F. is October 9th, but it is not just a standard appointment.  Instead, it is her pre-op appointment when we will be scheduling the date for her surgery.  Dr. F. said that it could take place as early as the end of October, although I am all for pushing it out into November!  While I am excited that Claire will be having her closure surgery before the end of the year (especially given that, before she was born, we didn't know if she would even be out of the NICU by then), I am nervous all the same, even though I know Claire will be in the wonderful care of Dr. F. and the rest of the amazing CHKD staff.  I am probably not doing a very good job of explaining how I feel, but suffice to say that all my fears are pushed aside whenever I look at this precious face:

Claire's new favorite toy

Okay, back to the invoices!  I hope everyone has a great week!  Claire has her 4-month pediatric appointment on the 16th, so I will try to post a quick update then!

(Wow ... that was a lot of exclamation points.  Sorry.)

~~ Val

Movin' On Up

Today was Claire's third appointment with Dr. F since her release from the NICU.  As always, it was a very positive appointment, and Bo and I walked away feeling extremely optimistic for the coming months.  

Dr. F continues to be impressed with the progress of her "O" and said she is ahead of the curve.  He confirmed that the "O" is now 100% covered in skin, which means that we no longer need to use the Xenaderm or Xeroform (both of which were to promote skin growth and prevent infection), but can instead simply use Bacitracin (or even baby lotion) to ensure that the skin does not dry out.  We are continuing with the Kerlix/ACE bandage wrap combination for the foreseeable future, although Dr. F did tell us that, as far as time frames go, we are looking at closure surgery when Claire is around 6 months old.  Claire could *technically* have the surgery now (just like she could have had it right after she was born), but the main goals have always been (1) for her abdomen to grow so it can hold all the organs without causing Claire any stress; and (2) for her core muscles to grow and strengthen as much as possible before the surgery to ensure (as much as possible) that a second surgery wouldn't be necessary in the future.  Otherwise, we could run the risk of Claire developing a hernia down the road should the muscles not prove strong enough to stay together all the way.  [Side note: This explanation might seem overly simplified, but it is basically what I took away from the appointment as it is almost impossible to remember all of the medical jargon Dr. F uses.  I understand it at the time, but almost immediately forget the exact terms and phrases he uses the second we walk out the door.]

While all of the above is definitely exciting news, the biggest development from today's appointment is illustrated by the following picture:

That's right, no more car bed!!!  Claire had recently sized out of the car bed 'bag' we were given at discharge (it is for babies up to 10lbs), so we kept our fingers crossed that Dr. F would release us to a regular car seat instead of having us move up to the next car bag.  We were so hopeful that we risked jinxing ourselves by pre-buying a car seat, but I am glad we did!!  The very first thing we did upon leaving the appointment was to remove the car bed and install the car seat for the ride home.  [I think our installation time was slightly slower than Prince William's, but then again, we didn't have hundreds of cameras on us at the time, so I am okay with that.]

Our next step, now that we have a general idea of when surgery should occur, is to get Claire on the waiting list for daycare.  Her next appointment with Dr. F is September 9th, followed by her four-month pediatrician appointment on the 16th (more shots!).  In the meantime, we will continue to enjoy our baby girl, and will continue to be thankful for everyone who has been rooting, praying, and cheering for Claire Bear!

We just wish she wasn't so grumpy all the time. ;)

Love,

Val

Two Month Appointment

Happy Friday everyone!

A little blurry, but the grin shines through!

Claire's two-month appointment was on Wednesday (it is still so hard to believe she is two months already!!), and, as always, it went very well and Dr. M, her pediatrician, was pleased with her progress.  She weighed in at 10 lbs, 15.5 ounces and measured 24 inches, for a gain of 1 lb, 9 ounces and 2 inches since her last pediatrician's appointment and for a total gain of 2 lbs, 11.5 ounces and 2.75 inches since birth.  Not a huge surprise since she definitely likes to eat!!  Of course, the main point of the appointment was vaccinations.  

Bo giving Claire a "pre-shot pep talk."

It was definitely hard watching Claire's face go from happy, to shocked, to upset in a span of 15 seconds, but fortunately she calmed down once we got outside the office.  She almost immediately fell asleep in the car, and remained that way for the next 2 hours.  In hindsight, I probably should have woken her up and given her a preemptive dose of baby Tylenol so she wouldn't be in pain when she woke up for good ... after trying to comfort her for the 20 minutes of crying that took place until the medicine kicked in, I definitely learned my lesson! Fortunately, that was the only hitch, and she has been back to her happy self ever since.

Although the main point of this blog is to keep everyone updated on Claire's condition and progress with her O, it doesn't mean that I don't want you to share in the non-medical part of her life as well [as is probably apparent from the tons of pictures I post on Facebook.  I would apologize, but I am not sorry :) ].  Here are some photos from the past week to give you a snapshot of Claire's daily life:

Claire's first time wearing shoes

Beach visit with my friend, Andrea, and her beagle, Roscoe

Getting comfort from Monkey after a bath (still not a fan)

We hope y'all have a great weekend!

Time Flies When You're Having Fun!

Someone is two months old today!!

Definitely not camera shy

A (slightly) longer update will (or should) be posted later this week after Claire's two-month doctor's appointment, but I just couldn't resist sharing this fantastic picture ... definitely a nice treat in the middle of the work day!

Progress Report

Yesterday was a busy day for Miss Claire Bear.  We started off our morning by a visit to the CHKD NICU Family Waiting Room where we met up with four local MOOs ("Mothers of Omphaloceles").  It was great to meet up with everyone ~~ while the love and support we get from family and friends is amazing (and something we absolutely could not do without), it is especially helpful to meet with other people who share your experiences and know exactly what you are going through.  Each of our "O" babies' experience with this condition is different, but they still have this common bond that we hope will develop into lasting friendships as they get older.  

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Side Note:  I do need to ask a quick favor from everyone reading this blog.  The reason that we were meeting in the NICU waiting room is because one of the "O" babies (the only boy in the group), who was set to be discharged last week after spending over three months in the NICU, experienced a setback.  He had surgery last Friday after an infection was found on his "O," and while that has turned out okay, he unfortunately aspirated when the doctors were placing the breathing tube, and has developed pneumonia as a result.  After a couple of very scary days, he is slowly getting better, but is still in need of prayers from as many people as possible.  So if you are so inclined to pray for this sweet boy, we would be very, very grateful.

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After a couple of hours back at the office, we headed back to CHKD for Claire's second post-discharge appointment with Dr. F.

Hanging out in the waiting room

As I might have said before (sorry, I am too busy lazy to go back and check earlier posts to see if I actually did say it), Dr. F is the epitome of calm, so although we are ridiculously excited about Claire's progress, we didn't expect any more of a reaction than a "looking good" from Dr. F.  We were therefore happily surprised when, upon seeing Claire's "O," Dr. F pulled out his cell phone and asked if he could take a picture, saying that he doesn't "get to take very many happy pictures like this."  He was extremely happy with both the amount of skin growth (there is only one very, very tiny spot left, smaller even than a pea, that remains to be covered) and by how much the "O" has reduced in size.  Dr. F is also pleased that the opening between Claire's "O" and her abdominal cavity is so far remaining wide, as opposed to narrowing as it does for some "O" babies (which causes a bottleneck, and the "O" ends up looking similar to a mushroom, with a very narrow neck at the base that makes it tough for organs to move back inside).  The plan, as always, is to continue doing what we have been doing, and to return in a month to see how things have progressed.  Dr. F mentioned that we might change things up at that point to add even more pressure to the "O," but it really just depends since things are going so well already.  Our next appointment with Dr. F is on August 7th at 9:30 a.m. [Oh, and Claire weighed in at 10 lbs, 4 oz at the appointment, but once again, this was with clothes and a diaper on, so it is slightly inflated.  We will get a more accurate weight at her pediatrician's appointment on the 17th.]

Since it worked so well the last time, I am going to end this post with some gratuitous photos of Claire, but first, I figured I would post a photo of the lovely car bed as a couple of people have asked me what it looks like.

This lovely contraption spans two of the three middle row seats in the Explorer.  It consists of a big plastic box (for lack of a better description), foam padding, and what I lovingly refer to as a burlap sack (or a straight jacket) that is attached to the box by straps.  Claire gets zipped into the sack, and is then further belted in with the Velcro bands.  Honestly, as you will see from the below picture, she doesn't mind it all that much, but it is almost impossible to get her into it when she is in the midst of a tantrum.  Fortunately, she doesn't have those too often.

Road trip to Stafford, VA

We technically only have the car bed on loan from CHKD for another two weeks, but I am sure this will be extended since Claire has not yet had her surgery.

And now, some random shots of Claire Bear for your enjoyment:

Hanging out on a lazy Sunday morning

Being cute while trying to avoid nap time

Finally, I hope everyone has a fantastic - and safe! - 4th of July weekend!!

Love,

Val

Can it be?!? Val FINALLY updated the blog!!

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:

Claire demonstrated how feisty she is right from the start.

Getting to hold her on Day 1 was such an immense thrill.

Getting her first cuddles from Daddy

First time in the NICU crib

Homecoming snuggles with big brother Cole

Claire's Yoda impression

Cat has begrudgingly accepted Claire into her home

Practicing holding up her head

[Again, I am sorry for the delay in this post ~~ I will try to do better about updating after doctor's appts and other milestones.]

Pseudo Update

First of all, I want to apologize for not posting an update sooner . . . things have been ridiculously crazy since last Thursday, and we are still trying to get our bearings.  The second thing I would like to say is THANK YOU to everyone for the tremendous outpouring of love and support that we have received both before and after Claire's arrival.  Your kind words and offers of assistance have helped us more than you know, and we are forever grateful.

I would love to post a long update right now, but I think that would take more time than I currently have (but I promise I will get to it before the end of the week).  Suffice to say that Claire is doing incredibly well, much better than we could have ever expected.  She arrived at 9:18 a.m. on Thursday, May 16, 2013, and has been exceeding all expectations since then.

Meet Claire Bear

Claire is pretty much taking care of things on her own - maintaining her own temperature, breathing, and definitely eating - since Friday.  She was given a little oxygen assistance on Day 1, but that was just due to her having a little fluid in her lungs that was resolved almost immediately.  She was allowed to start nursing on Day 2 (and has been a little piggie ever since).  All of her nurses and doctors, including the amazing Dr. F, have been impressed with her progress, and we are hoping to bring her home in the near future.  Although a possibility, we decided to hold off on surgery for Claire's "O" at this time, but will instead keep it wrapped (with a little compression) to give Claire's abdomen some more time to grow so it can accommodate everything.

Okay, must run - my fantastic sister, Kati, is waiting outside to take me to the hospital for Claire's 2:00 p.m. feeding.  

Thank you again for everything ~~ I promise that a more complete update will be posted soon!

Love, 

Val