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.
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| 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.
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| 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:
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| Hanging out on a lazy Sunday morning |
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| Being cute while trying to avoid nap time |
Finally, I hope everyone has a fantastic - and safe! - 4th of July weekend!!
Love,
Val
