News first- he has been stable. He has not needed ECMO as of this evening which is good, almost going to be 48 hours and he has been stable. So ECMO talks are going down. If he can hold his own that thought can be dropped.
Some of my posts might get too much in detail, so I will try and give an overall picture first and then details at the bottom, so people can skip it if it gets too technical. Also in other news, I will be doing a post with his birth story soon when I find a minute, but I realized I never gave his birth info- he weighed 7 pounds 3 ounces and was 21 inches long at birth.
Morning started with as usual pumping every 2 hours. After the 3am pump we went to the NICU and was glad to find him behaving and stable. He is still on very high blood pressure medication and nitric oxide. His vent settings have been brought down and he has been able to maintain decent blood gases and saturation levels. We then got back to the room, got some more sleep and went down for the rounds at around 9am.
My goal is eventually to write a very detailed blog post with all his numbers, but time right now does not permit. So I am going to just do an overall update and when I find some more time as he gets stable, I will do detail posts with all the blood gas, saturation and other numbers.
Sorry this post sounds so rambling- I got discharged today and I did not feel too bad, I felt like I was leaving him under the best care possible and came home with the hope that each passing day will get better. I am scared to get too comfortable as I know enough that these CDH babies love a roller coaster.
He has been stable the whole day, responding positively to their treatment. He is still on the oscillating vent, but the vent settings have come down which is a step in the right direction. He has an echo of his heart and it showed some issues in the heart as it is finding it a little hard to pump blood and so they have started him on another medication for that. They also gave him additional blood which has helped his pressure. He also had an head ultrasound and that looked fine. So hoping tomorrow that his echo will show some improvement with his heart. In other news, we also got peeeeeeeee. He needs a catheter as he is too sedated to pee himself, but his kidneys look good.
Overall a better and stable day. We also briefly saw him open his eyes and wave his hand 🙂 when he was going in and out of sedation.Having Avy with us is what is keeping sanity for Ajit and me. He is our rock till our other rock star is ready to come home. We were also able to take the grandparents and show their grandson to them. Now I am tired and hoping to get some cuddly sleep with Avy. Will update tomorrow night. Keep those prayers and positive vibes coming.
All intubated and sedated with the goofy from big brother…
First family pic…