12th Day in the NICU

(Mom)

Drayke has been off the nitric oxide for several days now and yesterday they took him off of the occilator! YAY! No more vibrating baby! The occilator gave him around 400 "breaths" per minute. Very rapid fire to help open up his little lungs to get them to process his oxygen better. So now he is on a regular ventilator and down to 50 "breaths" per minute which is a much more natural rhythm. He no longer looks so worn out and is definately much more relaxed. 3 days ago they started him on breast milk, 1cc every 12 hours. Today we were told he has been moved up to every 6 hours!!!

He is progressing so well. Every day his numbers are looking better.

The not so good: Last week I mentioned how there ws a potential issue and Thursday it was verified that he does indeed have a 1.6 centimeter cyst in his brain. What that means is there is no brain tissue where the cyst is. This is called Periventricular Leukomalacia (PVL). This is very common for premature births. It can cause any number of issues as with any other brain injury. The good thing is that since he is so young his neural pathways way very well re-route themselves to ignore the missing mass and he may very well have no ill effects at all. The worst case is cerbral palsy/muscular problems in the extremties/inhibited mental function. At this stage we simply do not know. We are all staying very hopeful given that Drayke is such a strong force, he is stubborn and already has such good body control. The next three years are going to be an adventure to say the least. The state of Tennessee has Early Intervention which automatically puts him in line for physical & mental therapy for the next three years to make sure he is developing the way he needs to. R and I have talked about how we are both going to be working together with our son on this journey. He has already joined a few yahoo groups and we are also going to be getting involved with local parents groups who are also dealing with the same type of issues.

There are days I feel so overwhelmed that all I can do is curl up into a ball and cry for hours. First and foremost though I KNOW I love my son more than I could have imagined possible. I have to be there for him. I have to be there for myself because he needs me so desperately. All I can do now is pump my breasts so he can have the vital nutrition that is in beastmilk. And I have to put more faith in R. I am so used to not having faith in anyone but myself but I need him more than ever now. The birth of Drayke has openned something inside him that has been dormant for a very long time. He has this inner glow about him that has been missing for a long time. He is the most beautiful man in the world to me. The father of my gorgeous son.