7 days post Norwood

Today we are 7 days post Norwood. It seems crazy to me that it has already been a week since that terrifying day. Wyatt was extubated yesterday, and continues to do well breathing on his own. They have already turned his Oxygen level down to 27%. His flow rate on his high flow nasal cannula is still high, at a .7, because his right lung has been slightly "deflated" and they are trying to force more pressure into that lung. They say once the flow rate is down to a .2 or .3, we will be able to start feeding him by mouth.

They turned his fentanyl off yesterday mid morning, and by 9 pm, he was starting to withdraw. By midnight, they had started methadone to help him. He was awake yesterday from 3 pm until 11:30 pm, sleeping only during the hour I was able to hold him. They also had to administer fentanyl twice, while we waited for the pharmacy to bring up his methadone, just to keep him comfortable. Right now, he is receiving fentanyl every 8 hours, but they may up that to every 6 hours, to keep him comfortable. He is also on precedex, which is a secondary pain killer type medication, and that is being weaned .1 every 12 hours. It will take a couple of days to wean him off that completely. They told us that sometimes, heart kids go home on methadone, which can be given by mouth, to continue to help them with withdrawl. 

I just don't think it's fair. He already  had to endure being poked and prodded from the moment he was born, a 12.5 hour open heart surgery, a second surgical operation just two days later, and now he has to deal with withdrawl. I wish there was some way I could take his place. Someway I could endure the hurt for him. So he could just be a happy, normal baby. 

Given his circumstances, Wyatt is doing tremendously well. I feel like each and every day we are taking steps in the right direction (going HOME). Yesterday was extubation. Today, they took out his foley catheter, and his rectal temperature probe. His chest drainage tube is draining far less today than yesterday(8 today vs. mid 40's yesterday), so my fingers are crossed that that will get removed tomorrow. He is breathing VERY well on his own, with O2 sats in the high 70's to low 80's, even with the small amount of collapse in his right lung. I was very nervous for extubation, because I was afraid that they would have to re-intubate, but I think we have won that battle. His blood gas levels remain steady, and his creatinine levels are finally falling. They started his TPN (IV nutrition) two nights ago, so he is finally being "fed" again. He should start receiving pediasure via his NG tube soon. 

I am so proud to be this little bug's mommy! His neighbor in the PICU also had the Norwood procedure done, the day after Wyatt's norwood. And Wyatt and the neighbor are on the same path, both extubated the same day, etc. even though Wyatt's surgery was 12.5 hours, and the neighbors was more in the expected 4-6 hour range, and Wyatt had to be on bypass twice, and the neighbor didn't. It gives me hope that Wyatt is doing so well, despite the additional shitty hand he was given after birth. He is such a fighter, so strong. 

We are still adjusting to going home every other night. While we want to be with Austyn, and play, and laugh, it is very very hard. Our hearts are currently in the PICU with Wyatt, just as they would be if Austyn was sick and in the hospital. It is a daily struggle to be the parents that Austyn needs us to be, because our baby is sick. But, we are doing it, and I like to think we are doing it well. Austyn seems to be, for the most part, himself. He has been a little whiney lately, but I attribute that to the situation, and strive to be as patient as possible with him, so as not to take out my anger, hurt, or frustration on him when he doesn't deserve it. The other side of this situation is loneliness. Dj and I hardly get to spend any time together, and when we are together, its in Wyatt's PICU room, with nurses, and intensivists, and cardiologists, and RT's, and nephrologists, and speech therapists. We haven't had any real alone time since Wyatt was born. Thankfully, our marriage remains strong, and we are each other's rock. I miss my best friend like crazy, who I haven't seen since Norwood day. Her family of 5 has some sort of flu or bug going around, so we don't want to risk Wyatt's health by getting together. So during the day, we are at the hospital, and at night, we are alone, either at home or in the PICU - we miss our people. 

That all being said, I continue to look forward to brighter days. I am now able to imagine my sweet Wyatt at home, in his swing, in his clothes, in his house. I am able to imagine life as a family of 4, which I have been unable to do since receiving Wyatt's diagnosis. Today I was told that case management would be speaking with us shortly about the things we will need once Wyatt is discharged. That in no way means that discharge is close, but is does mean that Wyatt's doctors see discharge in his future. 

None of this is how I imagined it would be. If I could give any advice to a family who is expecting a heart baby, it would be to try to mentally prepare yourself for the absolute worst, no matter how hard it is to fathom. And then expect that the hurt you will feel will be 10x what you imagined. There isn't a day that goes by that I am not terrified. I can't imagine my life without Wyatt, now that he is here. Just typing those words brings tears to my eyes immediately. But, I know that it is a real possibility, and that between now and the day he has his Glenn, we are fighting a consistent battle. But, together, as a family, we will support Wyatt, and help him get to safer days, no matter what it takes. Our love is strong, and powerful, and we can do this.

I love you sweet boy. SO, SO much.