Today Gary and I had appointments all day long at Brigham and Woman's and Children's Hospital. We left Clinton at 7:30 am, we dropped Spencer off at preschool and pulled in the driveway at7:25pm. It was a long day to say the least.
We started with my weekly allergy shots in Framingham, then we worked our way into the city for everything else. We started our day off with a 10am ultrasound, except we were told to go to the wrong location so we ended up running a little behind. We arrived at Ultrasound and the RN from Maternal Fetal Medicine checked us in. (Thank god for her...because the receptionist was far from friendly.) We had a scheduled ultrasound to check on fluids and to check for cleft lip. We then were greeted by Dr Bruce Feinberg who I was told previously would be delivering the baby. He confirmed that the previous ultrasound and diagnosis was accurate...Tricuspid Atresia (Tricuspid valve not formed) VSD(hole between lower chambers). However he assured me that my fluids looked good and that he did not see cleft lip, however that the baby's head was down.
After our ultrasound we made our way over again to Advanced Fetal Medicine where we had an appointment with a RN to go over everything that in a normal pregnancy would have already happened. For example, since I am almost 35 weeks, we had to cram everything that happens in weeks 8-34 into a 1 hours visit. All of the questions left my head spinning. After what seems like an eternity we were allowed to go to lunch because we had an appointment with Dr. Feinberg at 1pm.
Gary and I found our way to the cafe,it was so expensive and I hope that I never eat there again!
We waited for Dr. Feinberg who was the most kind and patient man that I have ever met. We discussed everything about my past pregnancy's and also a tubal ligation. I assured him that I never wanted to be pregnant again so he agreed that due to my "ADVANCED MATERNAL AGE" (Insanity!) that I would be an acceptable candidate for it. However, there was talk of going into preterm labor "naturally" and what exactly would my birthing options be? He had had a conversation with another attending there about the arachnoid cyst in my brain, they believed that that would not allow me to "push" as with a natural birth. I told him that I have come to peace with a csection and that I would like to have the tubal ligation as well, so he believed that this would be accepted as the final decision. Dr. Feinberg, had to be the bearer of bad news, as you can imagine, I feel as I have had enough bad news by now. He would be on vacation and out of the country for almost a month to Israel celebrating the Jewish holiday, and sadly he would not be my attending. Lets see, that would make the 4th OB that I have meet during my pregnancy. He was going to talk to a woman who he called Dani, who he said was a much better surgeon that he was. His words exactly, "I am a great surgeon, but when anyone needs help, we call Dani." So I really feel that I am in fantastic hands, who's ever they may be. More appointments were made for 2 more weeks.
Then we walked over to Children's hospital where we had a pediatric echocardiogram of the baby's heart to make sure that nothing had changed and a final diagnosis was made my the chief of Pediatric Cardiology. Yes, the baby has Tricuspid Atresia VSD and this is how we fix it. There was a lot of information that was given to Gary and I. It really left our heads spinning. Most importantly, there was nothing that we did to cause it, it just happens early on in the baby's life cycle, but there are a few options that we can do to fix it.
There will be 3 scenarios after birth & likely 3 heart surgeries in the first few years of life:
1. If blood flow to the lungs is not obstructed, too much blood may go to the lungs over the first few weeks of life. Pulmonary artery band may be needed timing will be unknown for surgery.
2. If there is no pulmonary blood flow to lungs from heart, medication (PGE) will be started and shunt surgery will be needed.
3. Mild lung blood flow obstruction, possible to go home without surgery. (Very unlikely, seen only in few cases)
The last question that I asked was prognosis and life expectancy. The MD told me that it is very possible that our child would be a healthy boy, except for this heart defect, however, heart surgery will need to be done and the possibility that the baby would survive all 3 surgery's without complications would be around 85%. However, you need to prepare yourself that the baby will be in the cardiac NICU for almost a month at birth.
We were then assured that if we have any questions to call and ask the MD's. We were then introduced to the social worker who showed us how to get into the NICU and introduced us to a fantastic nurse named Moira, who had a niece with the same diagnosis as our child. She smiled and said that she just celebrated her 8th birthday. (This was extremely comforting.) We toured the family rooms the lactation room and were shown where the bathrooms were. She explained how the floor worked and that the RN's pull 12 hours shift rotations, so they like no disturbance between the hours of 7am-7:30am or 7pm-7:30pm due to shift changes. They need to inform the incoming RN of all of the changes. We were then allowed to walk into a few different rooms to see exactly what things were in there. There were so many tubes and machines it was the worst thing that I could have ever imagined. And it was surreal that Gary and I would be our new home. This was also the point in our day that I had lost all composure and started to sob. Nothing on this earth prepares you to see an IV in a babies head. The Rn was lovely and assured us that this was only a pit stop on our way out of the hospital.
We then thanked Moira for her time and she assured us that we would be in fantastic hands when baby #2 does arrive.
We got stuck in traffic and I cried the entire way home. I wish that I could just fast forward 3 years and see what my life was going to be like. I keep clinging to the psychic that I saw a several years before I had Spencer, she told me that I would have 2 boys.
Praying that she was right!
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