This was the email update I sent out to friends and family on Wed. the 19th.
We had another super long day at the children’s Hosp. yesterday. 9AM-3PM with no breaks. I was starving. We had our last Fetal Echo which took a long time because babies’ bones are calcified now and all the pictures are very fuzzy. That took 2 hours. The good news is that there is still no deterioration in his condition everything was growing proportionately and Dr. Patel is still very optimistic that Logan will not need surgery in the first month of life. We are still hoping that we can wait 2-4 months. Dr. Patel always said (in terms of his life expectancy) that we know he won’t live to be 80 but there are no statistics on life expectancy because up until 10 years ago no one lived pasted 6 months. Yesterday I asked him if he thought Logan would live to be 30 and he said he didn’t know. That was really hard to hear. He said the oldest kids with a single ventricle are in there early 20s and some are doing better than others. The main complaint being tired and getting worn out easily. I am just really hoping they make some advances in all this in the next 10-20 years.
The other thing Dr. Patel said that I didn’t really like was that he doesn’t think Logan has a ductus. All babies (well most) have a ductus on the heart that allows oxygen to travel from the placenta to the baby in utero. After birth the ductus closes because baby doesn’t need that opening any more. Most babies with CHD are put on medications that keep the ductus open just to allow extra oxygen into the heart. I asked him if this was a problem or a concern and he said no and acted like it was no big deal, but I am just not so sure.
I will be full term Mon. so we won’t be seeing Dr. Patel until after the baby is born. And then Dr. Patel will be Logan’s cardiologist and will see him every week or two. I also asked him what the first surgery would be and he said they would try to reroute some deoxygenated blood or something, I was pretty confused about what he was explaining.
Then in the lobby we were met by the Palliative group (three ladies). They were a total downer. They wanted to talk about end of life plans. What we wanted if things didn’t go as we are expecting. Do we want a priest or baptism ect… How much medical intervention we want. Scott was really annoyed by them.
Then I saw an allergist due to an allergic reaction I had during my last C-section. They are going to put me on steroids before and after my surgery to help fight off any allergic reaction that might happen. (They have no idea what I was allergic to and think it might be a combination of things). He put a list of things that they are supposed to avoid next time around Latex, glue, tape, certain drugs, certain sutures, ect… in hopes that some of those things were the culprit. At this point I think maybe I just had a systemic reaction to a variety of foreign things throw at me all at once. But on the other had I have had two other major surgeries (knees) and didn’t have this reaction but it was 10 years ago too.
Then we had an OB appointment. I have started to efface but not dilate. They want to do weekly non-stress tests and ultrasounds now. During the ultrasound the Dr. said the umbilical cord pressure was in the 91th percentile (which is high) she said she doesn’t normally worry unless it is 95th % or higher but with everything else going on she wants to recheck the pressures Fri. So we have to go back and have another ultrasound tomorrow. Ugh….especially since we have to be there next Wed. for one. Hopefully they won’t find any more problems. The good news is even if there is an umbilical cord problem baby is big enough now to be delivered. He measured 6 pounds 2 oz. but then she said +/- 1 pound. So they have no idea, really.
Thats it. We are getting very close now (at the most being 3 weeks) if I don’t go into labor before they have scheduled a C-Section for June 8th at 12pm.
Here is the follow-up email I sent out on Fri. the 21st.
We went back to the hospital to get another umbilical cord pressure reading yesterday and everything was fine. They said it was just a fluke reading before. The also did another non-stress test and they said that looked great. So we were actually in and out of the hospital in about an 1.5 hours which is amazing for us.
We also met with Logan’s (soon-to-be) pediatrician. They are Akron Children’s Hospital pediatrics’ so they share the same computer system with the hospital so all Logan’s info will be there. They have a location just a few minutes from our house so it is very convenient. We talked a lot about home care when Logan gets home. I have some bad news for everyone, she said it is really important to not let many people around him for at least the first few months (and then I am assuming after surgeries as well). And she said no kids especially. Other than siblings. The other thing she said is that people shouldn’t come visit him in the NICU either. Other than immediate family and Grandparents. I figured with the scrubbing in and masks and everything it would be OK but she said no. I know a lot people wanted to come and meet Logan but I guess that won’t be possible until he is a little bigger and stronger. She said his lungs are going to be very fragile and he is going to have a poor immune system. She also said she wouldn’t take him anywhere the first few months either, so I guess I will be a shut-in this summer. Thank goodness Scott bought me a super comfortable new outdoor couch and patio set.
Also, she said even family and Grandparents should avoid contact if there is any signs of sickness. I am just hoping I don’t sick then I don’t what we would do.
We will also have to limit Ethan’s exposure to different people and places the first few months to make sure that he doesn’t bring germs in as well, so we will have a pretty quiet summer I guess.
She said that while we are in the hospital someone from Infectious Diseases will go over everything with us to make sure we have a safe environment for him. She also said there are programs to help us get home nursing care if we need that as well, so that was reassuring. I am going to be so scared to take this little fragile boy home.