So as they say CDH babies have an honeymoon period, the first few days or so when they seem to be doing well but then all goes downhill. Well Atiksh has really not had much of an honeymoon period and is just having a tough first day. He is on an High Frequency Oscillating Ventilator which is helping him breathe. He is on a lower setting than what they started with him last night, which is a good thing.
The thing they are more worried with him right now is his pulmonary hypertension which is caused due to his lungs not being developed properly and hence puts pressure on the heart and pushes the body into an hypertensive crisis, where the blood pressure is low and the heart is strained to pump blood. They have him on Nitric Oxide to help with the pulmonary hypertension and they are going to add on two more medicines to see if he responds favorably to that.
If all that fails he would have to go on ECMO. I really want to avoid that, as once a baby goes on ECMO the survival rate drops dramatically. However I also know that some kids make it only because of ECMO and I am glad we are in a place where we can get it.
When everyone says it is a roller coaster you cannot even fathom it unless you are in one. It has been only 20 hours since he came into this world and I am already tired of the ups and downs. A minute he seems to be doing just fine and the next he is doing not so great. I am trying to do what I can, pump every 2 hours, go and talk to him for a few minutes and hope that things will improve.
We did make it a point to take Avy and show him in case he needs to go on ECMO etc we wanted Avy to be able to see him while he looked more like a baby and the experience was much harder than we anticipated. With questions like, “Why is my baby sick?”, “When can I take my baby home?” to telling Atiksh’s nurse before he left, “Take care of my baby brother” made the day much harder than it already was.
As I am typing this in tears, I do hope all your prayers and strength will help tomorrow be a better day for all of us. As you can imagine it is an hard journey for us and if we are not up to talking on the phone, I hope friends do understand.