Yesterday, I did not cry at all! Carson did great.
This is my facebook update from yesterday. Sorry I didnt not update the blog, the day got away from me.
Carson UPDATE!! I am so proud of my little warrior!!!!!
He is doing great! He is on meds to keep him asleep and for pain management. They took out his (2) drainage tubes today, as well as his pace maker wires. Last time he had one drainage tube and it didnt come out till 5 days post OP. They are pushing him to see how much he is willing to breath over the ventilator. If he does extremely well, they will take it out tonight, if not they expect it to come out some time tomorrow. We can hold him as soon as the breathing tube comes out. He is still not able to eat, because of the breathing tube. They have him on IV fluids though so he is getting nutrition. Overall he is doing well. He is pretty swollen, but that is to be expected. If you have questions let me know. =) Please continue to pray that he kicks recoveries ass!
Today, Carson is 5 whole months old!! Time has gone so fast! Seems like yesterday we were just here recovering from his first open heart surgery. It’s so crazy and sad that in only 5 short months of life he has gone through so much. I couldnt be more proud of him and how amazing he is.
Today has been a hard day. I was so anxious to have his breathing tube out, but its so freakin scary when it does happen.
They took it out about 11:45am and he seemed like he was having a hard time breathing on his own at first. Also, they had to take him off the narcotics because it sedates him too much and he wont breath. So they put him on some kind of strong ibuprofen, and something else.
He was not happy after they took his breathing tube out. He was so upset. I bet parents who hear “I miss my babies cry” would think I am crazy, but I seriously miss his cry so much. When they took his breathing tube out he cried, forever, and it was a raspy very different, sad cry. It broke my heart.
The Glenn procedure makes the blood from his head and shoulders go straight to his heart, and while his body gets used to the pressure change it causes him to have a major headache. They say to compare it to the worse sinus headache you have ever had, and that is how he feels.
When they took his ventilator out he cried a ton, and his head was bothering him. He wouldnt calm down for anything and they told me I wouldnt be able to hold him today. But when he was crying I couldnt leave his side. He was so upset I was desperate to sooth him. I lifted his head and laid it in the crease of my elbow, to make it seem like I was holding him and I patted his butt. After about 15 minutes he finally started to calm down.
I stood, hunched over his bed for at least a half hour if not 45 minutes before I asked if it was possible for me to hold him. Thankfully, his nurse today was awesome and understood Mommy is the best medicine, and he let me hold him.
After the initial move, he calmed down and slept in my arms for a couple hours and then in his daddy’s arms for another hour.
Right now it seems like the pain medications have finally kicked in and he is peacefully sleeping in his bed.
Tomorrow the plan is more pain management. They say they headache can last about 3 days, as the pressure regulate themselves. Currently he is on 3 drips. One pain med, lasix (to get rid of fluid), and melrinone (heart medication). Tonight they plan on weaning the melrinone (I hope I am spelling that right).
He is also on oxygen. 6L of oxygen! Before surgery he was only on one. They said he cannot eat until he is on 4L of oxygen so hopefully they will start to wean that as well.
I am pumping to keep my supply up and also so he can be bottle fed in the beginning to they can closely monitor his intake. I love that I get to pump. I am a control freak, and I hate having no control over this situation. Pumping gives me a drive, and something I have control over that I get to do for him.
I have been surprisingly emotionally stable. What a terrible sentence, but I really dont know how to say that any other way. This has been hard. Really. Freakin. Hard. There is nothing easy about this. I just am grateful. I am grateful that my baby is alive. I am grateful for the staff here at CHLA. But most of all I am grateful to be Carson’s Mommy!
Sometimes I feel so special, I GET to be his mom. I dont understand how I earned the right to be his mom. I mean really, everyone tells me “I dont know how you do it.” Well, I dont know how I do it either! I just do, and I do the best I can and the best I know how. What I do know is love is the best and strongest medicine, and my love for this little boy is more than I could ever put in words. Only parents can understand that. And I wonder, do I love him more than other parents love their babies? Probably not, Im sure parents of normal babies love their kids just as much, but I think the difference is that I dont take anything for granite. I miss his cry! I miss getting to cuddle with him! I miss the smell of his sweet breath, or the way he looks at me. I miss him nursing, I miss everything right now. I know that my life is forever changed. I want to do so many different things now. The big things really dont matter anymore.
I am so proud of him. I know he doesnt understand what is going on. Sometimes I dont even understand, but I am trying to learn as much as I can. I hope one day he can look back and even read this blog and be just as proud of himself as I am of him.
He is my hero!