So after our high risk appointment (almost 2 weeks ago), Ricky and I went over to the NICU to meet with one of the Neonatologist who will be taking care of our baby girl after she is born. Her name was Dr. Lia Gravari and she was so nice, detailed, caring, and wonderful! She was also pregnant and due August 1st. I loved her so much but there is a chance will won't see her again because she may be on maternity leave when we have our baby. :) We didn't know what to expect because we did not know if we would just be introduced or what our meeting would be like. She actually took us into a private room and detailed what to expect starting at labor so she spent at least 1 hour explaining everything to us. Here is an overview of what she said:
When I go into labor there will be 2 Neonatologist (one experienced and one gaining their specialty as a Neonatologist) plus they will have two of their nurses there. I will also have my high risk Dr and nurses there too. So it will be a full house and this room is not very big. :) She let us know that babies with heart conditions may have a saturation as low as 75% when ours is 100% (think of our breathing/oxygen and a pulse oximeter reading). She said that they will not give a heart baby oxygen if their range is in their normal range of about 75-80% because if they do they will flood their lungs. She said you don't want to give them to much oxygen because their heart doesn't function like ours so above 80% is starting to get too high for heart babies. They will have a pulse oximeter to read her oxygen levels on her wrist.
The Neonatologist will be her main doctor and they make the decision on how long she stay in the delivery room with Ricky and I after birth. This length of time determines if we get to hold her, how long we get to see her, or if they will just rush her out of the room to the NICU. Dr. Lia told us that she knows how important it is for parents to hold and see their babies so they will do as much as they can in the room with us to allow us as much time with her as possible. She said the first call after delivery will be to the cardiologist so they can come do the fetal echocardiogram. They will give her an IV line through her umbilical/ belly button area. Two tubes (if I am saying that right) will go through her umbilical line because they serve different purposes: she will get her blood pressure checked, given sugar water, and calcium (because the heart loves calcium she said).
They will also start the prostaglandin for her heart which will help her heart valve stay open until they perform surgery. This medicine is VERY important for her to survive until surgery but it does have a side effect: at first it may make the baby not want to breathe so they give her a second medication to help that which is caffeine like you or I would drink. The caffeine will stimulate the breathing center so it will be very helpful for her.
They will be doing a head ultrasound, fetal echocardiogram, a lot of blood tests, have the geneticist exam her for abnormalities due to her chromosome issue, they will consult with a hematologist (because I have a blood clotting condition and they need to check her for this before they perform surgery), they want to do other ultrasounds to check her other organs, etc. She will have so many tests, scans, doctors, specialists, etc visiting her- especially early on. Feedings for her will start on her 2nd day of life. She said that babies who eat better before surgery (so the first 5-7 day) typically are better eaters after surgery.
Her first surgery is ideally about 7 days old, it will take about 4-6 hours to complete, they will have a nurse practitioner update us about every hour on how she is doing during the surgery, and they try to not put the baby on ECMO (for this situation the ECMO is used on infants who are extremely ill due to breathing or heart problems. The purpose of ECMO is to provide enough oxygen to the baby while allowing time for the lungs and heart to rest or heal).
After her surgery she will go to the PICU and she will have a different set of doctors for this area. We have not met these doctors and we will not meet them until she is there or right before (I'm guessing). For the first 24 hours after surgery she will have a Doctor stay with her in her room to really watch her blood, oxygen, blood pressure, magnesium, etc because the first 24 hours are the most critical after surgery. We can stay in the room as well.
She wanted us to be prepared for something that we will see after her surgery and we weren't really expecting this: her chest will be left open for the first 2-3 days after surgery so this is a hard thing to see she said plus her chest will be covered but we can still see everything including her heart beating. Wow! That will be hard! Her chest will be open because they need easy access to the heart in case anything happens and she will have a lot of swelling so they don't want to close up her chest until the swelling goes down. She will also get a PICC line because it is closer to the heart but that seems to be temporary.
So that was the overview of what she told us. I appreciated her bringing all of it together for us so we know what to expect. This appointment made everything very real for Ricky so it was hard for him, especially hearing about her chest being open. Ricky is not good about being in hospitals, around blood, or anything medically related so this whole scenario is very hard on him.
So if you can imagine how mentally exhausted I was after two days of big appointments like this: NICU/ PICU tour, first meeting with the surgeon, high risk maternal fetal medicine OBGYN with ultrasound, and the Neonatologist meeting. It was hard. Sorry for the delay in writing on the blog but I needed the temporary mental break. :) I am now 34 weeks pregnant as of today so things are getting closer and closer- she will be here soon and if she is not here by 39 weeks then they will discuss induction. My last two children came on their own timing at 38 weeks and my first pregnancy with Ethan came at one day shy of his due date- so we will see. :) Thanks for reading!
P.S. The neonatologist was so nice that she even gave us her cell phone number when we were done and said that she knows this is overwhelming and she wants me to keep in touch or call her with any questions because they are here for us. She even gave both of us a hug! She was just so nice and helpful!