Saturday, May 1, 2010
When I got to the hospital this morning Jacob was looking Tacky... Literally! Jake got so upset that his heart rate was registering as tachycardia. It was in the 180's which is not horrible but not good either. He was so hungry he was eating his hand. He was due for a feed but not past due however for a few days now Jake has been getting hungry about 2 and a half hours after he eats.
The problem is they want to feed him every 3 hours. The dietitian does not want to push his stomach because of the nissen. I think we should spread out his feeds more. It can't be good for him to be getting so hungry that his heart goes crazy. Plus the goal is for him to gain weight. When he gets upset he breathes twice as fast and burns more calories. I think its worse for him to get that upset than it would be for him to spread out his feeds. He has a specialist that takes it all into account so I will talk to her again on Monday.
Good news is he is gaining weight stedily. He is just about back to his birthweight now. GO JAKE!
Other than then him being so upset when I first got there we had a good day. We took a walk around the CICU, and CCU and also went down to the special delivery unit to say hi to Jenn. She had her twins Mia and Madden two days ago. Mia has HLHS like Jacob. Please pray for Mia who will be having her surgery next week.
Praying for good health:
So they are once again talking like we may go home this week. I am afraid to get my hopes up though. It is all up to Dr. Swazst on Monday. She will see if she thinks he is ready.
And of course when they are talking about going home everyone seems to be getting sick. Aidan has a cold and has had a cough. He is at home in WV. He has not coughed today and his cold seems to be going away so I am praying it does. My mom has a sinus infection so she has not been to see the baby in days. I have had some sinus pressure not much but just in case I decided to start antibiotics to. I am so terrified of this baby getting a cold that I do not want to take ANY chances. I have even been wearing a mask around him and I wash my hands like crazy. I know I can't keep him in a bubble but he is so fragile and he has such a hard time breathing I don't want to chance anything.
So even if I am being silly and a neurotic worrier I think this situation grants it. Everyone better get used to it because I am sure it will be even worse once I am home lol. So please pray everyone gets or stays healthy so Jacob can safely go home. And pray, pray, pray that Jacob continues to be healthy and gets stronger so he can go home. Although I am so afraid of not having the nurses and being so far from the hospital I am also anxious for Jake to know life outside of the hospital. I wonder if the fear will ever fade. It seems so overwheming sometimes.
I told Jake today how grateful I am to have been blessed to be his mother. I can't believe they offer the option of termination or compationate care now. Jacob is such a miracle and such an amazing child. I know this life is not what I would have chosen for him and to say it is difficult and scary is an understatement. But I would not change it for the world. When I look at that sweet angelic face I thank God for him and can't imagine my life without him.
Thank you again for all of the continued prayers, we appreciate the support we have received more than you will ever know.
Love the Baker Family