prayers needed

I'm sure everyone thinks I haven't posted because I'm busy at home with a new baby...and I wish so much that that were true.

Our son was born in some distress, and his respiration was too rapid for the first several days for him to feed normally. He was on an IV for a couple of days, then went to a feeding tube through his nose, then to bottles, and finally I was able to nurse him. I went home after 4 days, he stayed in the NICU. We drove back and forth twice a day at two of his feeding times so I could nurse him and we could hold him and visit.

The problem is that my baby lacks a gag reflex and if he either burps up milk or gets too much in his mouth at once, he can't choke and clear it himself. The nurses had been able to solve it with suction and he was getting better at recovering from these episodes, until the other night when a nurse was feeding him and he choked so badly he had to be put on a ventilator for recovery. Luckily he did not aspirate much of anything and was taken off the ventilator after a few hours.

On Friday he was transferred to a different hospital with a more sophisticated NICU and a billion specialists. We've watched as geneticists and neurologists have poked and prodded him, and waited very impatiently for the doctors to allow him to eat again (he went back to IV only after the ventilator incident). They have finally allowed it, 5 ml at a time, again through a tube. He was taking almost 50 ml per feeding before, or nursing a full feeding. Watching him cry with an empty tummy almost killed me.

My baby looks perfect. He breathes fine on his own, nurses successfully, cries, kicks, waves his arms around, fills diapers, coos, and snuggles into me when I hold him. He is in most respects a normal, healthy, gorgeous baby. But something in his craniofacial nerves or musculature is not right, and we need to find out what it is and fix it before he comes home. Sometime between now and Monday my sweet, tiny boy will be sedated and given an MRI so we can see his whole brain/nerve structure and hopefully get an answer to what is causing him this problem.

I don't know what I did wrong, if anything, during my pregnancy. I don't know what my child did to deserve this. I don't know what I did to deserve this. I'm so frustrated, and sad, and very frightened for my son.

So if you wouldn't mind keeping up the prayers for my little family, and mostly for my little boy, I would truly appreciate it.