Eleanor Hebert Our Summer with Ellie

First post: Aug 12, 2018 Latest post: Aug 12, 2018
Eleanor "Ellie" Rey Hebert was born at 4:08 PM on Wednesday, May 30th at Women's and Children's in Lafayette, LA and flown to Cook Children's Medical Center for heart surgery on Friday, June 1st.  

Twenty one weeks earlier, on Thursday, January 4th, roughly 20 weeks into the pregnancy, we had the full body anatomy ultrasound that is typical at that stage of the pregnancy, and the tech thought she saw fluid around Eleanor’s heart and thought her kidneys appeared dilated. No other issues of concern were detected despite it being a full scan, but both of these discoveries were significant concerns. It was end of the day so our OBGYN told us he'd set up a visit with a maternal and fetal specialist for first thing the following morning. That unfortunately got pushed back to Monday and we spent a rather nerve-racking weekend awaiting the appointment. On Monday that ultrasound showed there wasn’t any fluid around the heart, and the kidneys were a little dilated but within normal range.  The specialist noted that the original 20 week ultrasound was lacking some necessary measurements, so some work was repeated (and the quality of the original ultrasound was called into question). No other issues were detected. The maternal and fetal specialist ordered blood work in order to test for congenital birth defects out of an abundance of caution more than anything since nothing appeared wrong with Ellie from the ultrasound. We were to learn much later that the test she ordered is not an all-inclusive test--something never explained to us. That test came back negative and our OBGYN told us everything was fine.  He planned a follow-up ultrasound at 24 weeks just to be thorough. We breathed a sigh of relief and kept moving forward. At 24 weeks we had the scheduled ultrasound. It looked fine so it further reaffirmed our belief that everything was ok.

On Thursday, May 3rd, at roughly 37 weeks into the pregnancy, we went in for a weekly check up and when the OBGYN listened to her heart rate, which was normally between 126 and 130 bpm, he found it at 110. That alarmed him so he sent us for an ultrasound on the spot.Upon reviewing the results immediately following that check, he said that the ultrasound tech saw something that might be an issue with her heart (but was very vague about it) and that we were being sent to a different maternal and fetal specialist.  Just like before we were told it would be first thing the next morning and just like before they ended up pushing it to Monday. We consoled ourselves by telling each other that if it were something serious they wouldn't have pushed it off, but that was certainly at odds with how the OBGYN had initially treated it with such a sense of urgency. We went to that appointment and the doctor had barely walked into the room before he started discussing an issue with Ellie's brain. Needless to say that caught us very off-guard, since previously we were told we were seeing him about a heart issue. He said that it looked like her vermis, which is the structure between the two halves of the cerebellum, was either missing or malformed so he gave us a possible diagnosis of Dandy-Walker syndrome.However he explained that because of the gestational age and her position he wasn’t able to clearly see everything he wanted and that there would be an ultrasound of her brain after delivery that would give them a better idea of what we were dealing with. He did mention that normally this would be something that would have been caught on the 20 week ultrasound, but he also stressed that the focus at this point needed to be the heart and that we shouldn't worry about the possible brain issue since it was not life-threatening and didn't affect the delivery plan. The heart, he said, needed to be our primary concern. He said that it looked like the left side of her heart was smaller than her right but he didn’t go into too much detail as he was going to refer us to a pediatric cardiologist as soon as possible that day.  He told us he'd get those results after our visit and promised he'd be in touch with us later that evening to discuss. We left that appointment in a daze and then went to the pediatric cardiologist later that day. He did an exam and echo of her heart and explained that yes her left side was a little smaller than her right but he saw nothing to indicate that it wasn't functioning correctly, and he confirmed he felt comfortable with us sticking to the delivery plan (vaginal delivery at Women's and Children's) as opposed to what the OBGYN had previously mentioned as a possibility--C-section delivery in New Orleans so as to be near the Children’s Hospital of New Orleans. However he did acknowledge that there was a part of her heart, the aortic arch, that he couldn’t see clearly because of her position and age. Overall he felt things were ok and that there would be another look after birth. We went home to await the call from the maternal and fetal specialist--a call that didn't come until after we pursued him the following day.
Despite the pediatric cardiologist's findings,  the maternal and fetal specialist felt we should consult yet another pediatric cardiologist--this one tied to Children's Hospital of New Orleans. So on May 14th (Kristy's birthday) we went to a different pediatric cardiologist for a second opinion. He gave us the same findings as the first pediatric cardiologist and even told us that after she was born (and had that initial ultrasound of her heart that was planned) he'd be surprised if she would ever need any care from a cardiologist after that. He also said that he was able to see her aortic arch and that he thought it looked fine.  So at this point we were left to worry about only a potential brain issue--an issue that hadn't appeared on the 20 week ultrasound and was only potentially appearing on the far less accurate 37 week ultrasound. The OBGYN felt that everything was going to be fine, and we were happy to believe that.
As we got closer to the due date there weren’t any more ultrasounds but there were several CVTs, which are tests where two sensors are used to track the baby’s heart rate and to track contractions. Those tests showed that while Ellie’s heart rate was on the lower side, she was strong enough to survive a vaginal delivery.  Her heart responded appropriately to contractions and stimulus, and her baseline was just above 110, which is on the low end of normal.
Ellie was born at 4:08 pm on Wednesday, May 30th at Women's and Children's as planned. We didn't have a c-section and her heart rate was low but strong throughout the process. After some debate, NICU has been brought in for the delivery just in case they'd be needed. When they checked her out her APGAR score was 5 (later 7 and 7) but she was fairly unresponsive and needed oxygen so she was taken from the delivery room and put in NICU. They did pause long enough to let Kristy hold her very briefly, but of course we didn't get to have the skin-to-skin contact that we had planned for nor were we allowed to try breastfeeding. We got to see her that day while she was in NICU and they did have an ultrasound of her heart and her brain but didn't give us the results at that time. The next morning they repeated both of the ultrasounds and a pediatric cardiologist, one we've never met with prior, came in to have a closer look. What he saw was that she had a coarctation of the aorta--basically a restricted section--which would require surgery. It wasn't a problem when she was in utero because her ductus, or PDA, took care of most of the blood flow through that part of her heart but that vessel closes after birth. So they put her on medication to keep that vessel open since without it she wouldn't survive for long. We were given a short list of possible surgeons--three in total--and the top of the list was a doctor at Cook Children's in Fort Worth. That was the closest option and with Kristy having family an hour or so away it was an easy choice. They would put the wheels in motion to get her airlifted to Cook's as soon as possible.
The brain scan results were made available to us later that evening. The NICU doctor explained to us that her earlier diagnosis of possible Dandy-Walker was incorrect--she does have her vermis, but that her corpus callosum, the structure that connects the two halves of her brain, was missing. While we found it odd that the diagnosis was changing like that, the new diagnosis seemed favorable to the previous one, and in any event we knew from the NICU doctor that Cook's would be repeating all scans, tests, etc. so he encouraged us to wait until they had a closer look at things in Fort Worth. We also learned that she would likely be flown out fairly early the following (Friday, June 1st) morning. On Friday, June 1st (James' father's birthday and the day we would have all been going home had things gone to plan) Kristy was discharged early from the hospital so we could get packed up and get on the road ahead of the flight team. Ellie was airlifted from the hospital in Lafayette about two hours after we started traveling, and we arrived at Cook's about two hours after she did.