One Month Birthday!

It's almost impossible to believe that Monday was Caden's one month birthday. It honestly feels like we are in some sort of time warp here. In a lot of ways it feels like time has been speeding by and our baby is growing up before our eyes. But on the other hand, if feels like we have been here forever and we are never going home. It's sad to think that for more than half of Caden's life, we were unable to even hold him.

Not too much changed for Caden yesterday. The doctors stopped the antibiotics he had been on since his emergency chest opening on January 28. But otherwise, medication stayed the same except for Lasix being given less often. They also ordered an ultrasound of the diaphragm to make sure it was moving properly and to see if there was any fluid around it.

Caden had a big day with appointments. Mid-morning, occupational therapy came and tried to assess his ability to suck and eat from a bottle. Although he had been sucking on his pacifier really well last Thursday and Friday, over the weekend, he developed a pretty strong gag reflex when it, or anything else, was put in his mouth. When th OT used her finger to try to get him to suck, he ended up gagging on that also. So, when she put a little milk in a syringe and pushed it to the back of his throat at the same time as the pacifier was in his mouth, he gagged and ended up throwing up a little. Most of the spit up was mucus and a little bit of milk from his last feeding. The OT decided Caden wasn't ready for bottle feeding yet. She outlined a “pre-feeding” plan for him in order to get him “de-sensitized” orally so he would be willing to suck. She said it really varies greatly between children as to how quickly they get that suck reflex back. Some kids get it back almost immediately and others struggle for a longer period of time. So if Caden follows his trend, he will probably take awhile to catch onto this concept and start to be able to eat by mouth.

The bolus feeds are going better than they were on Sunday. They started giving him 35 ml of milk over a half hour period, every two hours. But, he was having some spit up with each feed so they expanded the time frame of the feed to an hour. As he tolerated that well, they reduced the time to 45 minutes. In the morning on Monday, he was at a 45-minute feed. But, during the day, the nurse was able to reduce the time to 30 minutes and he handled it well. She thought his main issue with the spitting up had to do with mucus build-up more than his stomach not tolerating the milk. I think that is good because it seems like the mucus problem is more easily resolved than not tolerating milk.

A little while after OT left, the physical therapist came to work with Caden as well. She talked with me a lot about the importance of giving Caden positive touch. She said so much of the touch he gets is negative when the doctors or nurses come and poke and prod him and he starts to associate pain or discomfort with each encounter. So she talked about us needing to just touch him as much as possible while we were with him. This is something I think Greg and I have done a pretty good job of doing already. From the time he was in NICU, we have tried to touch him as much as possible, even if we couldn't hold him. We hold his hand, stroke his arms or legs or chest, or touch his head. We will try to be even more intentional about touching him so we can create some positive associations with touch. Now that we are able to hold him again, hopefully that will help. The other thing the PT talked about was working with him on opening up his arms from the tightly clenched position in order to keep him from getting too tight. His arms were clenched pretty tight, but he was more willing to let us stretch his legs out. As he matures a little bit, the clenching reflex in his arms should reduce also.

Once PT was done, the nurse helped me hold Caden again. It was wonderful! I held him for awhile and then traded places with Greg so he could hold him also. When he took over, I went and ate. Shortly after I came back, the ultrasound tech came to do the scan of Caden's diaphragm so Greg had to give him up. During the ultrasound, the tech said the diaphragm was moving pretty well but she had the radiologist to come and look at the images with her to make sure the images were what she wanted to see. When the radiologist came, she watched the screen for a few minutes and said the right side of the diaphragm where they did the eventration repair was looking pretty good. It was moving well but not quite as much as the left side but that was to be expected. She said the good thing is that it was moving and it was moving in the right direction (as opposed to pushing down). And, there wasn't any fluid around the diaphragm so that was good as well. We were glad to know the repair was still looking good.

The nurse tried a couple more times during the day to turn off his oxygen and his saturation immediately started dropping. So, for now, he is remaining with the oxygen on. I held Caden again for quite awhile after shift change and during that time, he was awake for a lot of it. So I worked with him on getting used to the pacifier in his mouth. He tolerated it pretty well but he didn't really suck on it. It would just sit in his mouth or he would chew on it. I guess this is normal for a baby who's been intubated for awhile. But the OT just wants us to continue to work on getting him used to the pacifier in his mouth and having positive associations with something in his mouth.

I am so happy I get to hold Caden again. I think it will help our bonding. I am also looking forward to the day when the last two lines come out so that it will be easier to hold him and not be quite as much of an effort. We're getting closer to that day, but we're not quite there yet.