Hi All,
I know it has been a while since any updates, but luckily no news is good news. I had a gap with no appointments thus no news. My gap has now closed and I will be starting weekly testing for the baby.
Yesterday Luke and I had what the clinic refers to as our Abbott day. We had consults and appointment from 10:00 in the morning until 3:45 in the afternoon. The morning started out with a growth ultrasound, Biophysical profile and another Fetal Cardiac Echo. All three of these test are down in ultrasound. Norah is still in the 35% and they estimated that she weighs around 3lbs. The perinatologist was happy with this and had no concerns. I still can not tell you what the biophysical profile is but we had one and apparently it went well. I was excited because during the ultrasound the tech did some 3D images for me and I was able to see her face perfectly. It was like seeing a star in the dark sky. Her face looks perfect and she looked beautiful. I was so grateful she did that for me because I am pretty sure that was not on her agenda of images to obtain. We also met with the perinatologist and had a non-stress test. That test was normal and the Dr. really had nothing new to add. He was a very energetic man and I later learned that nurses refer to him as Wild Bill and I could see why. I had a hard time not laughing while he was talking to us.
We also did another fetal echo and at that time met with the pediatric cardiologist. This was a different cardiologist then the ones I have seen previously. During the echo the Dr. thought he saw some new malformations but was not completely sure. He assured me that they were just technicalities and they did not really matter and would be treated the same. However, we later met with the cardiac surgeon who did not share the same opinion. Apparently if these new malformations exist Norah may not be able to have the atrial switch and would have to have a more complex surgery that may also need to be followed up by future surgeries. Also the previous cardiologist thought there was some pulmonary stenosis or PS present. That also would change things. However this last cardiologist did not mention it. So really I have no idea. In reality we have had three different echos with three different Cardiologist and they all saw something a little different. The surgeon explained that they would do another echo after Norah was born and that would give more definitive answers and would direct him on what surgery would be appropriate. He was hopeful the arterial switch would be the direction we would take and did not even go into detail on the other surgeries. I contemplated e-mailing one of the cardiologist to have them review the echos to give me a better idea of what was going on, but after some thought I realized Norah is going to have what she has, they will best know after she is born and no matter what they have a surgery to fix it so I just need to be patient. The one thing all of the cardiologist have said is that it does appear that Norah will have to go to the cath lab for the atrial septostomy. They cardiologist explained that this is not a planned procedure and would be more of an emergent thing and could take place anywhere from right after birth to 3:00 in the morning and they just do it when it appears Norah is starting to not do as well and her PFO is starting to close. That procedure would be done to stabilize Norah until her big surgery.
We later had a tour of the new Mother baby center, NICU, and Cardiovascular ICU. As of right now the plan is to let me go into labor spontaneously and I can labor in one of the nice rooms but I will have to actually delivery Norah in the OR just in case. I can see Norah briefly but then they will take her directly to the NICU. Luke can go with her but I will have to go back to the labor room and recover for about an hour. After that they said I can go to the NICU whenever I wanted to see Norah. Hopefully I will be discharge the next day and then I can stay with her as much as I would like. They even allow us to sleep in her room in both of the ICU's. We also met with the neonatologist. She explained to us what to expect while Norah is in the NICU. Norah will be in the NICU most likely until the night before her surgery where she then will go to the cardiac ICU and be intubated if not already and all of her central lines will be placed. We will spend the remainder of her hospital stay in the cardiac ICU. The docs explained that we can anticipate being in the hospital for 2-3 weeks all depending on how Norah does.
Right now I am 32 week and feel like I am in the eye of the hurricane. Despite being uncomfortable I am trying to just be patient. Norah is perfect while I am still pregnant and I am providing her with everything she needs. My next appointment will be next Thursday where I will have another Biophysical profile and non-stress test. Hopefully all goes well. Thank you to every body for the continued thought and prayers.
God Bless,
Amanda
