First of all, let me apologize for the lack of a witty title for this post (not that any of my other titles have been oh-so-hilarious, but I have hope for the future), but I wanted to get this up as soon as possible before I forgot anything.
To backtrack a little, we had our consultation with the neonatologist, Dr. T, on Thursday, March 21st. Admittedly, I had no idea what a neonatologist was or what they did prior to this appointment. Per Wikipedia, which is, of course, the ultimate source of all my knowledge, neonatology "is a subspecialty of pediatrics that consists of the medical care of newborn infants, especially the ill or premature newborn infant. It is a hospital-based specialty, and is usually practiced in neonatal intensive care units (NICUs)." [Source: Wikipedia] Essentially, Dr. T - or another member of his practice - will be in charge of Claire's overall care while she is in the NICU. Our consult lasted only about 15 minutes as there was not much information he could give us other than a quick explanation of what we could expect while Claire is at CHKD. That being said, both Bo and I really liked Dr. T and were glad to learn that he is on the NICU schedule for the large part of May (and thus should be there for Claire). Afterwards, we took a very brief tour of the NICU and started to familiarize ourselves with the surroundings.
Today was the all-important consultation with the CHKD pediatric surgeon, Dr. F. As you may remember, we had our first consult with a different PS in January and were not at all impressed with how it went down, to the point that we were considering looking elsewhere for Claire's care. In the end, we decided to give CHKD another chance and pushed for the consult with Dr. F. since we had heard so many good things about him from some of the local MOOs. To put it simply, the consultation was a huge success and has reaffirmed our faith in CHKD. While we didn't necessarily get the answers we wanted, we at least got answers, which is more than we can say about the first consultation. Here is a short summary of what we learned:
~~Val
To backtrack a little, we had our consultation with the neonatologist, Dr. T, on Thursday, March 21st. Admittedly, I had no idea what a neonatologist was or what they did prior to this appointment. Per Wikipedia, which is, of course, the ultimate source of all my knowledge, neonatology "is a subspecialty of pediatrics that consists of the medical care of newborn infants, especially the ill or premature newborn infant. It is a hospital-based specialty, and is usually practiced in neonatal intensive care units (NICUs)." [Source: Wikipedia] Essentially, Dr. T - or another member of his practice - will be in charge of Claire's overall care while she is in the NICU. Our consult lasted only about 15 minutes as there was not much information he could give us other than a quick explanation of what we could expect while Claire is at CHKD. That being said, both Bo and I really liked Dr. T and were glad to learn that he is on the NICU schedule for the large part of May (and thus should be there for Claire). Afterwards, we took a very brief tour of the NICU and started to familiarize ourselves with the surroundings.
Today was the all-important consultation with the CHKD pediatric surgeon, Dr. F. As you may remember, we had our first consult with a different PS in January and were not at all impressed with how it went down, to the point that we were considering looking elsewhere for Claire's care. In the end, we decided to give CHKD another chance and pushed for the consult with Dr. F. since we had heard so many good things about him from some of the local MOOs. To put it simply, the consultation was a huge success and has reaffirmed our faith in CHKD. While we didn't necessarily get the answers we wanted, we at least got answers, which is more than we can say about the first consultation. Here is a short summary of what we learned:
- There are essentially two ways omphaloceles can be handled after birth - surgery to put the organs into the abdomen and to close the hernia (either immediately after birth or a few days thereafter), or a procedure called "paint and wait" where you keep the omphalocele medicated and wrapped to give the baby's abdomen a chance to grow before closure surgery. Obviously, we have been hoping that Claire will be a candidate for the former option over the latter, but it is looking like this will not be the case. While Claire's omphalocele is pretty small in size, it is still considered a "giant omphalocele" due to the involvement of the liver. Dr. F made it pretty clear that he rarely, if ever, recommends immediate surgery for Os that contain even a portion of the liver. The main concern is to not put additional stress on the baby and to make sure that there is enough room in the abdominal cavity for the organs to be put into place. When dealing with the bowel, this can be pretty simple (he compared the bowel to a Slinky full of air that could be compressed down and essentially smushed into the abdomen, where it could then "reinflate" and expand the abdomen), but that is not necessarily the case with the liver. First and foremost, they want to take care not to harm the hepatic vein; secondly, the liver, as opposed to being a "Slinky full of air" is more akin to a "rigid Jell-O mold" (Dr. F's phrase, not mine), and therefore not something that can be forced into the abdominal cavity at will.
Whew. Sorry, that is a LOT of information to just throw out there and definitely NOT the short summary I was aiming for. Let's see if I can put it another way ... although things can always change between now and Claire's birth, the general thought is that she will not have surgery right away to repair her O. Instead, Bo and I will be taught how to wrap the "O," which is something that will need to be done at least once a day. Assuming that everything else (feeding, breathing, ability to maintain temperature, etc.) is okay, Claire can go home as soon as we are comfortable handling the day-to-day care of the O. Best case scenario that Dr. F could give us is that Claire will be discharged around three weeks after birth (and her surgery would be scheduled at some point in the future). Again, this could all change the second Claire is born, but for now, that is the plan we are going with.
We got a lot of additional information (like confirmation that Claire will have to be in a car bed - not a regular car seat - in the beginning due to her O), but I won't throw it all out here as I know I have been too wordy already (although definitely do not be afraid to ask me if you would like to know more!). The end result is that both Bo and I were extremely comforted by Dr. F - from his demeanor to his extensive knowledge and everything in between - and he has given us tremendous confidence going forward, despite the fact that there are still a lot of unknowns. He also confirmed that we can request that he be in charge of Claire's surgical plan, which is definitely what we intend to do.
After our meeting with Dr. F, we took another, longer, tour of the NICU, this time led by a parent support coordinator who was put in contact with us through a local MOO. If nothing else, Bo and I are learning that CHKD is, for the most part, staffed with some truly wonderful and caring people, and we are extremely lucky to have it available to us and to Claire.
Okay, enough sappiness ... :)
Tomorrow is the third non-stress appointment, followed by an appointment with the ob-gyn. I don't expect to learn anything new at either appointment, but I will update should I turn out to be wrong.
~~Val
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