Monday (April 9, 2012):
We got the diagnosis on a Friday and weekend was hell. Monday we had our appointment with a Maternal Fetal Medicine Specialist. They did another ultrasound in their offices and during the ultrasound Ajit saw that the stomach was right next to the heart and it was confusing. He asked the lady who was doing the ultrasound but she kind of brushed it aside. The baby was on a roll, having his hands constantly on his face making her job harder.
After that we waited and Dr. Dennis came in and explained that infact there is a diaphragmatic hernia. The funny thing was when the lady was doing the ultrasound and he looked so perfect that for a minute we both thought that the Dr is going to say it was all a mistake and that he is fine. Never happens that way.
He gave us more shocking news, his stomach is entirely inside his left lung cavity and it has pushed his heart to the right side of the body. Now nothing, nothing ever can prepare you to see this on the ultrasound. His stomach and heart are right next to each other and it is bizarre and scary beyond words can ever explain. He then said that we would have to a Fetal Echo with a cardiologist and meet the genetic counselor to talk our options. We were also told that we may not be able to deliver in our city as they do not have the ECMO machine, which is a heart and lung bypass machine which some of these kids would need. So that made all this ever more confusing.
Tuesday (April 10, 2012):
Morning we had an appointment with the genetic counselor Ms. Jewell. She was nice as she can be. She explained everything gave us our odds. Every bit of news was more depressing than before. We both broke down, we both broke down on how we can never ever think of another baby if we don’t have him, our baby Little A. ( All our names start with A in our family and we still haven’t finalized his name). She nicely explained that it is like loving and losing and how our heart thinks it can never love again only to be able to find the strength to do it…and we left it at that.
After talking with her we decided to the Amniocentesis to rule out any related chromosomal abnormalities. I was immediately whisked to have the procedure down and my it was more painful that I imagined. They took all the amniotic fluid they needed (baby pee- as the nurse called it) and we were told that we would get the preliminary results back on Friday and the final would take about 10 days.
Right after that we had the Fetal Echo that afternoon. So we went for lunch and headed to the cardiologists office. We were about hour and half early for the appointment but I wanted to go just in case they could see us earlier and they were able to. The echo was for about an hour, first the technician did it and then the Dr himself, Dr. Gay came and did the process for more than 30 minutes and the longer he took the more scared we were.
But at the end of it he gave us the good news of the entire past week- His heart is normal, no issues he can find. This makes his odd better. The lesser a CDH baby has to worry about the better is the overall the consensus. So we left home a little strong.
Evening we did research on nearby hospitals and picked University of VA hospital about 2,5 hours drive from where we live. We fixed an appointment with them for a second opinion.
Thursday (April 12, 2012):
We got up and was planning to leave early in the morning so that we can take a look at the place including accommodations as an average CDH baby has a NICU stay of about 30-45 days alteast. This would require me to stay close to the baby to manage feeding etc, and we need to keep Avy at home so that he can continue daycare and Ajit can go to work.
But the previous night Avy had a breathing issue, sounded like he was wheezing, so I had to take him for a quick Doctor visit before he left. He is fine, just that allergy season is extremely bad this year and he is suffering a bit.
So we finally left around 10.30am and reached there around 1.00pm and went straight for lunch and then reached the hospital. We had another ultrasound and met with the head of the MFM department there Dr. Ferguson. He was extremely nice and explained everything very clearly.
In CDH the lesser organs in the chest cavity the better and as of now he could only see the stomach up there and the better news is liver is still down which is a good thing. See we all learn how to see those tiny silver linings.
The only thing pending now was the results of the Amniocentesis and if that is good then we are set to go. I will have ultrasound every 4 weeks to monitor the baby and highly likely be induced around 38-39 weeks so that we can plan on delivering the baby at UVA.
Friday (April 13, 2012):
The amnio results came back- All good. Yayy!! One more less thing to worry. So the next on the plan is another trip to UVA to meet with the Pediatric Surgeon and a Neonatologist. We will also get a tour of the NICU and see what will be Little A’s home the first few weeks of his life.