Worst Day

Saturday was the worst day of my life. But it could have been even worse.

We spent all day Friday with Jack and it was a really nice day. He was so wide awake and alert. I held him for a long time, PJ held him. It seemed like he was better than he had been.

Friday pics:



When we got back to the hospital Saturday they said he'd had a good night, and had been awake for a lot of it (unusual for him). He was sound asleep and they were retaping his breathing tube to his face. While doing this, the tube became dislodged (the hospital says he coughed and it dislodged.... I won't say my opinion).

The alarm was pressed and people came running from everywhere. The numbers on his monitor were dropping, dropping... more people were being called. They were able to bag him with the mask over his face. After a couple minutes they told us to go wait in the family room across the hall. While we sat in there I could see more people running in and out, and we could hear people being paged CODE BLUE to the NICU. Nurses kept coming in and giving us little updates but we knew, it wasn't going well.

They couldn't re-intubate him for over 2o minutes, and the bag wasn't getting enough air into his lungs because he clamps his mouth down. They had to give him chest compressions because his heart stopped. They were about to call us in and tell us to say goodbye to him when finally one of the doctors was able to get the very smallest tube into him and get him breathing again.

That's a long time for a baby to be down.

The tube was so small though that he wouldn't be able to keep it for long, it would clog quickly. They called in the head of ENT (Ear, Nose and Throat) to try and re-intubate him with a bigger tube. They needed to do it in the operating room - they told us one of three things could happen - they would get the new bigger tube in, they would have to try and give him an emergency tracheotomy if they couldn't get the tube in, and if both those things failed, he would die.

I asked Jack's doctor if she thought we shouldn't do this - if we shouldn't make him suffer any more and just let him go. She said, he had gone through a lot. The time he was down had been awful and really difficult on him. But she said, he was okay now, and she thought it was worth trying to get the bigger tube in. So I signed all the forms, and kissed him goodbye and prayed for God and Mary to watch over him, and keep him from suffering anymore, whatever that meant.

When the nurse came and told me he was out of surgery and the doctor's wanted to talk to me at his bedside, I was still feeling such a sense of dread that I would walk in and he would have a trach in his throat. I think I feared that more than him dying - that's a road no one wants him to go down. When i walked in and saw him laying there with nothing on his neck, and the tube down his throat, I've never felt more relief in my life.

Today he is doing okay. They won't know for awhile how much damage his being deprived of enough oxygen for so long did to him, if it did any. For now he looks good..... as good as he can. He is swollen and sedated and so, so sad to see.

We finally have had to accept that he is a very sick baby. Sick as in, might not get better. I thought, while I was sitting with him, waiting for him to go into surgery, that maybe it was best if he didn't come through it. His whole 6 weeks of life have been nothing but pain and suffering. He has been through so much.

But then, when they wheeled him away, and I had to go sit and wait for word on what was happening, I wanted so much for him to come out of there alive. I never wanted anything so much in my whole life. I am not ready to let him go. Maybe that is selfish, I don't know, but I'm not ready. Maybe I am foolish to still have hope that he can be a normal little boy, but I do, a little. I have a little hope of that. He is such a sweet baby, and he is so tough. Even the nurses say, the way he survived this, the way he's hanging in there, he's such a fighter. He wants that tube out, he wants out of that hospital, he wants to fight.

That's the brief version. Today we came home from Philly because we just needed to get back, see our girls, try and get ourselves together. I never knew you could feel that much panic, fear, terror, sadness, all in one day. I want to say I'm cried out but I know I'm not even close.