Big Boy!

Tuesday December 16th: Today was an ok day. Colton's chest xray was a little better. The right upper lobe of his lung was starting to expand more. They continued the CPT (percussion therapy), but were able to wean the rate (mandatory breaths) on the ventilator some more. The discussion is to treat him like his lungs are small for his age and get him to grow some more lung tissue. This happens as he gets bigger and older. The plan is to go slowly on the ventilator wean to get Colton to a place where we think we can try him off the ventilator again.

His feedings were restarted at 5ml every 3 hours. Of course he wasn't too fond of this. He struggled throughout the night with a lot left in his tummy after being fed. Stubborn little boy :)

We did get another test result back today; the microarray (see this link Microarray). Colton has a piece of DNA missing on his 18th Chromosome. According to the geneticist, this means absolutely nothing for him and is not causing our current situation. Nick and I are going to have our microarray's drawn to see if this is something that we passed on to him or if the missing chunk is something that happened when Colton was being created.

The big thing for the day was getting out of the isolette and being put into a big boy bed and being dressed. My little man is getting bigger!

We decided to go home for the night for the first time since Colton was born. It was a much needed break. We slept for a good long time and it felt great. We missed our boy, but it was nice to spend time with Marley.  

Wednesday, December 17th: Today was a weird day for us. We didn't wake up at the hospital. Since we went home last night and stayed at home we slept in. And I mean slept in. I got up to pump in the middle of the night, but overall we slept in until 11 am. I know slackers!  We finally made it to the hospital by 2pm and did Colton's care at his 3 pm feeding. He is moving soooo much more. He really hates it when you play with his head or his belly.

They were able to wean his ventilator rate some more and are talking about putting him back on NAVA tomorrow through the breathing tube. He did well with that the last time he was on it so keep your fingers crossed.

Feedings have not been going well. He likes to save his food for later. He ended up getting a suppository to make him poop last night and he just got another one about 30 minutes ago. We are trying to feed him 7 ml, but we'll see how he does.

Tomorrow Colton is scheduled for a 24 hour EEG. This should tell us if his brain activity is getting better and if he is having seizures we don't know about. If you recall, his initial EEG was normal. This one will stay on until Friday morning.

We got another test result back today. If you read some of our posts from before we started our rounds of IVF, you'll know that I am a SMA (spinal muscular atrophy) carrier ( see link here SMA). A hallmark of this condition is not moving, so this was the first thing that Colton was tested for. His results came back today.... Colton does NOT have SMA!!!! He is however a carrier like his mommy. This means that he could pass it on to his kids if he marries another carrier; Something we will tell him about when he is much, much older.

Little by little we are weeding out conditions. We are hoping that we have the rest of the test results back soon, so we know what we are dealing with and how to better help our son.