What a day!!!!!!!
Maxley is officially breathing on his own (with the help of oxygen). We expected he would need a little assistance.
We waited around all morning for the doctor to come in and extubate. It was finally 11:30am that they came in. The whole thing only took 5-10 minutes but then he was so agitated and really couldn’t get comfortable. He was crying and it looked like he was scared and didn’t know what to think.
The tube totally indented the roof of his mouth there is a huge divet on the top. I guess it is normal but it is a good thing we have a cranial sacral specialist because she will have her hands full. He can’t swallow yet so he will have to get used to swallowing spit and coughing without getting suctioned.
He got more comfortable as the day went on but still around 1 he was really agitated and silent crying a lot because he has no voice yet. I asked if holding him would help and the doctor came in and approved. As soon as I got him in my arms he zonked and slept hard for a couple hours.
IT WAS INCREDIBLE!!!!!!
It was so wonderful to just hold him and cuddle him for real. God, he is so beautiful. I just can’t believe how cute he is and that I get to be his mommy.
But, he can stretch his arms without having the tube in the way. He grabs at the nose cannula a bit but can’t do too much damage. He loved playing with his GJ tube too.
My mom was able to hold him for a couple hours after me and I actually lifted him out of bed and handed him to her. Then, the second time I held him tonight I got him out of bed by myself and had the nurse help with all his wires and tubes. I want to get comfortable so that I can be pretty independent with him.
He is heavy. I can’t believe how big he is. I have lost so much time. It is devastating. I see all my friends with their babies and realize how much more time they have gotten to spend with their little ones. How they don’t spend the majority of their day combating the exhaustion of grieving their spouse. How they get to spend their entire day just loving their babies.
I am so jealous. It isn’t fair. It isn’t fair that I lost Scott. It isn’t fair that Maxley will never know his dad. It isn’t fair that I never got to see Scott meet his son. It isn’t fair that I never got to be a mom and a wife at the same time. It isn’t fair that I have to miss so much of Maxley’s life.
Don’t get me wrong. I don’t dwell on these things. I actually consider myself a pretty positive person. I try to look at the bright side of things and not a day has gone by that I haven’t appreciated what I have. I am so thankful that I will walk out of here with Maxley one day. I am thankful that Maxley has an incredible father, even if they won’t get to meet in this lifetime. I am so thankful for the 8 years we spent loving each other.
But, it will never be enough.
Just do me a favor? Squeeze your little ones extra tight tonight. Tell you spouse you love them. Above all, be thankful for what you do have. Others would do anything for what you have and you never know when it could all be taken from you.
I feel like there is so much more to say. I am just overwhelmed with energy from today. I took tons of pictures and videos today so, enjoy!
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