Consultation Updates

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:

• 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

Overachiever (31 weeks)

Today was Claire's first of many non-stress tests (it was supposed to be last Friday, but I did not think Sentara would appreciate my coming in with a nasty case of the stomach flu, so I rescheduled).  The test consisted of sensors being placed on my stomach to monitor Claire's heart rate to make sure she is not in any distress.  There is probably a more technical explanation for the purpose of the test, but I will stick with what I know. ;)  The sensors stay in place for 20 minutes, and during that time they want to see at least 2 instances of the heart rate increasing by 15 bpm.  Claire decided to show off and hit the minimum within the first five minutes.  I, of course, got excited, thinking that it meant I could leave early, but no such luck . . . stuck for the duration. Which was not a bad thing at all since I got to listen to Claire's heartbeat the entire time.

I was surprised to learn after the test that I would also be getting a mini-ultrasound.  This is something they will be doing once a week - unless I am scheduled for a regular ultrasound at EVMS - to check the amniotic fluid level.  And they do mean "mini" - I think it lasted five minutes, at best.  But I still learned that Claire apparently has a lot of hair, gets the hiccups (which is good because it means she has been practicing breathing), and likes to grab her right foot and bring it up by her face.  I was also told that, due to the high amniotic fluid, I am at a higher risk for pre-term labor, but it is not too high of a concern at this time.  All in all, a great appointment.  Before leaving, I went ahead and scheduled the non-stress tests for 3/22, 3/26, 3/29, and 4/2, but don't worry . . . unless something significant happens at an appointment, I'm not planning on doing a post for each and every one!


~~Val

30 Weeks Down!

Hey all . . . sorry I didn't post after yesterday's appointment!  We ended up going straight home afterwards and delving into the land of 1st grade homework, making dinner, and putting together Cole's Ninjago Lego set (according to the box, the set is called "The Final Battle."  Which is why I think I have the song "The Final Countdown" stuck in my head right now).

The plan was for Bo, Cole and I to attend the ultrasound together, and then Bo and Cole would stay in the waiting room during the regular ob-gyn appointment. Unfortunately, Bo got tied up in JDR Court, so it was just Cole and I (and Claire, of course) for both appointments.  Before I get into anything else, I just want to stress how proud I was of Cole.  Not that it should come as a surprise to anyone who knows him, but he was extremely well-behaved the entire time.  Once the novelty of the situation wore off, he was perfectly content to play Angry Birds on my phone, and never once asked how much longer it was going to be or when we would get to leave.  

The ultrasound tech was also great, especially with Cole.  She printed out a bunch of pictures of Claire for him to take to show 'n' tell, and even changed the color of the screen so Claire appeared blue, orange, and purple (why the ultrasound machines have this ability in the first place, I have no idea). 

Here are some other Cole highlights:

• Cole was not impressed to learn that Claire is floating in "baby pee."  He was even less impressed to find out that he had done the same thing.  The only thing that made it remotely better was to learn that every baby, including me and the ultrasound tech, started out the same way.
• As always, Claire was very active during the ultrasound.  When the tech pointed it out, Cole said, "Claire is ALWAYS moving.  It's because she really wants the attention."
• The tech told Cole that Claire was going to give him a run for his money.  "Yeah, and I don't even have any money."
• When we walked back into the waiting room between the two appointments, we could hear a baby crying.  Cole smiled and said, "Awww . . . a baby was just born!"  He later said the baby sounded "just like a chicken."

[Side Note:  Cole and I were talking the other day about how we would have to go visit Claire in the NICU after she is born.  I mentioned that we would have to take turns since they only allow 2 people in at a time, so Cole set forth the following schedule: "My mom and I will go see her on Monday, and we will go again on Tuesday.  On Wednesday, my dad and I will visit Claire, and on Thursday, you and I will go." I interrupted him at this point and asked, "So you get to go every day?"  Cole sort of glared at me and responded, "Of course I do, Val.  I am her big brother."  Which is an irrefutable argument.  Accordingly, those of you who are planning on visiting Claire in the NICU will need to make sure you first check with Cole so he can clear a space for you on the schedule. :) ]

As for the appointments themselves, here is a quick rundown of what we learned:

• Claire weighs approximately 3 lbs, 1 ounce, and is in the 64th percentile for growth.  As always this is just an estimate given the omphalocele.
• Claire's "O" still looks like it just contains her liver.  The ultrasound tech is pretty sure that Claire's gallbladder is in her abdomen, but it is still hard to be entirely sure.
• It was, at times, pretty hard to distinguish the omphalocele from the rest of Claire's abdomen.  According to the tech, the "O" is "less impressive" than it was when first diagnosed.  We take this as good news since it means, at the very least, that the "O" is not growing.
• There has been an increase in the amount of amniotic fluid since the last appointment.  The doctor said that this usually occurs with people who have diabetes, but since I am not diabetic, they are not sure what could be causing it.  Erin, the physician's assistant, said that it is not a cause for concern, but because they do not know why it is there, we are going to go ahead and start the fetal non-stress testing (the original plan had been to wait until week 35).  So, starting Friday, I will have to go in two times a week, every week for the remainder of the pregnancy, so they can test Claire's movements to make sure she is not in any distress.
• Again, they want to wait until 39 weeks to schedule the C-section, and the doctor's schedule for that time frame won't be available until mid-April.

So, aside from the increase in amniotic fluid, everything seems to be looking good.  We are keeping our fingers crossed that it will stay this way for the remainder of the pregnancy.

Next appointments are as follows:

• Friday, March 15th - First non-stress test at Sentara Norfolk General (to be repeated every Tuesday and Friday until Claire is born)
• Thursday, March 21st - Consult with CHKD neonatologist and a tour of the NICU
• Monday, March 25th - 2nd consult with CHKD pediatric surgeon (Dr. F)
• Tuesday, March 26th - EVMS ob-gyn appt
• Tuesday, April 2nd - EVMS ultrasound

Finally, thank you for all of the kind words and well wishes that we have received since sharing Claire's story.  Just knowing that people are thinking about and praying for her does wonders to ease our minds.  We are so grateful for the support of our family and friends.  It means the world to us.

Love, 

Val & Bo

The Best Laid Plans

Just a quick post to give an update on our upcoming appointment schedule ...

We have been known to say that one of the great things about running our own business is that we get to control our schedules; however, sometimes the opposite is true, and our schedules control us.  Especially when it comes to court.  

Unfortunately, we realized yesterday that a client who just retained us has a court date the morning of March 13th, which conflicts with our consult with Dr. F., the pediatric surgeon.  Assuming it would be easier to reschedule an appointment than to try to get a continuance of the hearing, I contacted Dr. F's office and moved our consult to Dr. F's next available date - Monday, March 25th.  

We are still scheduled to have our next ultrasound on the 12th, so keep an eye out for another update!

~~ Val

In The Beginning . . . (Part 2)

Before we get back to the remainder of the appointment summaries (I can feel your excitement from here!!), I wanted to write a little bit about Omphalocele Awareness Day, which is January 31st.  I obviously did not create this blog in time for the 2013 OAD, but thought I would instead put it out there WAY in advance for 2014.  You're welcome.  :)

A quick note about the ribbon: in 1999, a few "O" moms created a support group called "Mothers of Omphaloceles" or "MOOs" for short (they are also the creators of omphalocele.net, the site referenced in the first post).  The black and white cow design is a play on MOOs, and they encourage everyone to wear black and white on Omphalocele Awareness Day to show their support.

To sidetrack even more (sorry, but you'd better get used it - that, and my prolific use of parentheses), the MOOs have a Facebook group that I became a member of as soon as I could following Claire's diagnosis.  I cannot say enough good things about the wonderful people who are members of this group.  FYI - membership is not just limited to MOOs; grandparents of "O" babies, fathers of "O" babies, and even adult "O" babies, to name a few, are welcome to join and share their experiences.  It has been a great resource to date, and I have even had coffee with a mom whose "O" daughter is currently in the NICU at CHKD. 

And now back to the timeline of events to date . . . 

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     December 24, 2012 (19 weeks):  This was just a "normal" morphology ultrasound.  We only met with the ultrasound technician, who confirmed that the omphalocele was still present and that Claire's growth is right on track.

     January 8, 2013 (21 weeks):  This appointment was with our original provider, Womens Care Center (WCC), for the 20 week ultrasound (where gender is typically determined).  Sue One, the ultrasound tech who originally diagnosed the omphalocele, had continued to follow our case, and gave us a wonderful gift at this appointment.  You see, we had already had ultrasounds galore thanks to Claire's "O," so this one was pretty unnecessary; however, WCC also provides a DVD of the baby at the 20 week ultrasound.  Sue, knowing that we would not get this service at EVMS, very graciously and generously gave us this ultrasound for free.  Words cannot express how much this kind offer meant to us.  As with the December 24th ultrasound, we confirmed the presence of the omphaloce and took Claire's measurements.  Her arms, legs, etc. were on track with 21 weeks, while her abdominal cavity measured about a week behind.  This was to be expected given that some of the abdominal contents are in the omphalocele instead.  

Per Sue One, it looked like Claire's "O" just contained her liver.  Sue One also informed us that Claire has what is called a "two vessel" umbilical cord.  Typically UCs have three vessels - one vein and two arteries, while Claire's only has the vein and one artery.  Apparently, this is one of the most common irregularities to affect the UC and is not a cause for concern as it usually does not have any impact on the health of the baby.

     January 14, 2013 (22 weeks):  This was a double-dose of doctors appointments, starting with the fetal echocardiogram at EVMS with Dr. Gru and (per Sue One) his girlfriend, Sharon (the ultrasound tech).  As with before, Claire appeared to be growing right on schedule, except, of course, for her abdomen.  Dr. Gru then told us that Claire's heart looks great.  More specifically, while the position of her heart is at a sharper angle than one would usually find (a result of the omphalocele and not a cause for concern), he could not find the hole he had originally diagnosed back on December 3rd.  According to Dr. Gru, this means either the hole is really, really small, or has gone away altogether!

Next up was our consult with the pediatric surgeon at CHKD.  This, unfortunately, was not as positive of an appointment as we were left with more questions than answers and only came away with the worst-case scenario: Claire being in the hospital at a minimum of three weeks, with the surgery to repair her "O" taking place anywhere from a few days after birth [if small and there are no respiratory/cardiac issues] to between 8 months and 4 years old for a larger and more complicated "O."  We left the appointment feeling frustrated and confused, which was definitely a let down after the positive appointment with Dr. Gru.

     January 15, 2013:  This was just a "regular" ob-gyn appointment, the main point of which was to transfer care from WCC to EVMS.  While I absolutely LOVE WCC and everyone who works there, it is in our best interests to transfer to EVMS.  The main reason has to do with where I deliver - regardless of where I am, Claire will be immediately transferred to the CHKD NICU after birth.  If I stayed with WCC, I would deliver at DePaul, which is a couple of miles from CHKD, while if I go with EVMS, I will deliver at Sentara Norfolk General, which is actually connected to CHKD.  Although I was originally torn between EVMS and WCC, it was a no-brainer to accept the transfer of care once it was explained to me in those terms!

     February 8, 2013 (25 weeks):  Once again, we were at EVMS for a fetal echocardiogram.  When we saw it was to be performed by the doctor we had at the December 3rd appointment, we geared ourselves up for another long and silent experience; however, she was very friendly, talkative, and, most importantly, informative this time around!  As before, Claire was measuring right on track, and, according to the doctor, weighed about 2 lbs, 8 ounces, which put her a little bigger than the average weight at this stage in the pregnancy.  However, in Claire's case, bigger is better since every bit of extra weight will help her after birth.  The doctor also told us the following regarding Claire's "O" - it looks like it contains just 2/3 of her liver, it is not growing (a good sign), and it contains some fluid (also a good sign).  Also, while livers that are in omphaloceles are prone to having problematic blood vessels, Claire's looked "beautiful," as did her heart and everything else.

     February 12, 2013 (26 weeks):  While this was just supposed to be a "normal" ob-gyn appointment, we have learned that, with Claire, we should always except something different, and this appointment was no exception.  As I stated above, we were not extremely happy with our initial appointment with CHKD and had decided to try to get another consult with them before deciding whether to move on to other options (i.e., consults with other children's hospitals, like CHOP in Pennsylvania).  I mentioned this decision to Erin, the physician's assistant, at this appointment, and her immediate reaction was to jump on getting us another appointment - not just with the pediatric surgeon, but with a neonatologist as well - to make sure we are as comfortable with CHKD as possible.  

Erin also confirmed that I would almost certainly be delivering Claire via C-section.  While it is not what I necessarily want, it is the preferred method in cases such as Claire's to avoid a higher risk of injury to that portion of the liver contained in her "O."  Also, given that Claire's development, aside from the omphalocele, is continuing on schedule, she will not have to undergo fetal non-stress tests (to measure her heart rate in response to her movements to ensure that she has adequate oxygen flow) until later in the pregnancy as she appears to be holding her own.

     February 26, 2013 (28 weeks):  Once again, a "regular" appointment with no ultrasound, but, of course, we always end up with things to share!  This time around, it was the Rhogam shot.  Background:  my blood type is O-negative, meaning I am Rh-negative, meaning (according to the Internet, which is always correct) that I do not have a certain protein on the surface of my red blood cells.  Bo, who is O-positive, does have that protein, meaning so could any of our children.  While this is not necessarily a concern when it comes to Claire, our first child, it could be an issue for any subsequent children (Note: I am not making any promises about more children!) as my immune system, once exposed to a baby's Rh-positive blood, would produce antibodies that are sensitized to destroy the "foreign" Rh-positive blood cells, putting the baby at great risk.

Okay, I just read over that paragraph and realized it was a lot of medical jargon that I am not sure even I understand (Source: www.rhogam.com).  To make a long story short (too late!), my Rh-negative blood + Bo's Rh-positive blood = my getting a shot in my butt cheek, much to my discomfort and Bo's delight.  Seriously, the boy was downright giddy.

Additional information we received at the appointment:

• I do not have gestational diabetes - yay!  More Diet Dr. Peppers for me! (Seriously, my one "vice" that I have struggled to keep in check during this pregnancy).
• I do have low platelets, but not too low, and thus, not a concern at this point.
• Claire's heartbeat was, as always, very strong, so no need for non-stress tests at this time.
• I do not have an iron deficiency.
• I will absolutely have a C-section, which are typically scheduled to occur at 39 weeks (so the week of May 12th) unless there is some indication later on in the pregnancy that it needs to occur sooner.

Finally, we were able to schedule another appointment with a different CHKD pediatric surgeon - this time around, we will be meeting with the former Division Head of Pediatric Surgery at Portsmouth Naval Medical Center, Dr. F (I am trying not to use last names in this blog - we'll see how long that lasts!).  We have heard great things about Dr. F, not just from EVMS, but from other moms with "O" babies, and are keeping our hopes up that this appointment will be a more positive one. 

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Hard to believe, but we are all caught up on appointments now!  Sorry for the ridiculously long timeline, but I wanted to give everyone enough information as possible.  I will try to have a new post up as soon as possible after each future appointment or other development. Our next ultrasound is scheduled for March 12th, and our pediatric consult is scheduled for March 13th.  Please, please please do not hesitate to ask any questions you might have about Claire or omphaloceles in general.  While we still have a lot to learn, we are willing to share anything we do know and will do our best to answer any questions!

~~Val and Bo