Tuesday, April 27, 2010
Need to fatten Jacob up!
Jacob had to be put back on his oxygen. Still not on much but he seems to still need a little help every once in a while. He is such a rapid breather that he wears himself out.
So not much new to report. He had a heart echo today and it all looked great. They did an x-ray on his lungs and they seemed the same. Basically we are still fighting the same battle we have been fighting for a while. Jacob needs to gain weight. He was staying around the same weight and even lost a little. He is eating but he breathes so fast that he is burning the calories so he is not able to gain weight. Today they lowered his volume of food but added more calories. He is still getting breast milk but they are adding concentrated formula to it for calories. He was getting 24kcal formula but now they raised it to 27.
The good news is that he is tolerating the food very well. They said for such a little belly he tolerates high volumes of food which is great. He is getting feed with gravity feeds now which is great to. He doesn't need a pump during the day which makes it very easy for us. We just hang a syringe and fill it with milk and hook it up to the g-tube. The food goes in within 20 min or so.
They decided to put him back on continuous feeds just at night to make it easier for us. It takes time to tape up the syringe and get it all hooked up so I would never sleep. This way I can set the pump and just refill it every 4 hours.
Jake is still breathing very fast. All of the doctors think that it is all do to his physiology and due to the restricted septum. His lungs may still be a little under developed so his body is compensating by breathing fast. He is not bothered by it but its making him not gain weight. All of the doctors think he will get better but its going to take time. We have to go at his pace. His body has been through so much and it needs time to heal. They think if we can get him to gain weight then his lungs will get better.
Still no idea when we will be home. The important thing is Jake's heart looks great and he is a very happy baby. He is doing really well. I am getting a great lesson in patience. Jake will let us know when he is ready and until then we just have to wait and try to help him gain weight.
He is so well tempered. He cries on cue when he is hungry. And cries immediately when he has a dirty diaper. Other than that he is happy and so sweet. Everyone tells us how well his is doing developmentally. He makes great eye contact, holds his head up great. I try to keep him out of the hospital bed when I am there. I act as if we would if we were at home. I think that will help a lot in keeping him on track developmentally since its hard spending so much time in the hospital.
I know I did not expect to be in the hospital this long but I am also so grateful that Jacob is doing so well. He has been through so much yet he is so happy. This makes me so happy. I am so grateful to have such wonderful doctors and such an amazing support system. Most of all I am so grateful for Jacob. He has and continues to teach me so much about life and what is important.
Please pray that Jacob starts putting on weight and that his breathing issues start to resolve. I hate seeing him struggle to breath. Its amazing the things we take for granted like breathing and eating.
Thank you as always for all of the support and prayers...