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 . . .
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
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:
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
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 . . .
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
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.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
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
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