May 29th Cole is almost 2 weeks old. The days are going by so fast. I wish I could freeze time with my baby boy in my arms. I feel like I just need more hours with him the 24 hours I do get just aren't enough. Cole has his first cardiologist appointment June 4th I'm nervous how the appointment will go. As of now Cole sleeps a lot basically all day he wakes to eat and get his butt changed. He falls asleep during feedings. This whole situation breaks my heart. I just have to have faith keep praying and trust that what ever will happen is in the hands of the Lord. Easier said than done. I often sit in silence with Cole studying every breath he breathes every hair on his head. I try to imprint in my mind every frown and smile he makes. I sometimes rush to his crib in the middle of the night to see if he is breathing terrified to find him lifeless. As I hold him in my arms I break down and feel helpless. I love my baby more than I could ever explain. For now he is home, growing, happy and peaceful. He is not in pain and doesn't bare a scar on his chest yet.
Hang in there and stay strong! I had a similar experience with my son just a couple of months ago. It is terrifying! But it is also amazing what technology is available to save our little babies. You will make it through!
ReplyDeleteThank you, Amanda. How did your son do during and after surgery?? I'm so fearful but know these doctors fix babies everyday that's their jobs.
ReplyDeleteMy daughter has HLHS. When she was you her I had an Angle Care monitor that would go off if she were to stop breathing. It helped me sleep much better. There is a new thing called a Snuza, that I have thought about getting her.
ReplyDeleteShe was born at UW & had her first 2 open heart surgeries at Seattle Children's by Dr. Permut. We now live in VA though. If you'd like to chat or have any questions, let me know.
Hi Kiersten my son was born at UW Valley Medical Center in Renton and he will also go to Seattle Children's. Not sure who the surgeon will be yet. I'm hoping to have a surgery date or time frame tomorrow at his cardiologist appointment. I would love to chat with you. My email is heartmommy6@gmail.com or you can find me on Facebook Rachelle Pombo. Hope to hear from you soon.
ReplyDelete