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Discussion Starter · #1 ·
When Avraham Chaim was in the NICU his muscle tone was low. I already have a low tone child so I was a little worried but not surprised.

Since he came home he really firmed up and I was happy. Now the ped and neurologist want me to bring him for physical therapy because he is tight especially in his legs and neck. I was so surprised by this. I feel like I just got knocked over. I was so excited that he was no longer so floppy and the look of pitty from the doctor about my surprise was really unnerving.

Has anyone had this happen and the tone issues resolve or are we likely looking at at least some amount of cerebral palsey?

He had a lot of oxygen issues and was blue on 100% O2 on the vent for quite a while before they decided to try surfactants so I guess that CP wouldn't be a surprise if that is what we are looking at. I just want to hear from someone that they had something like this resolve.

Avraham Chaim is 2 1/2 months old now, born at 36 weeks 4 days with the development (lungs, skin integrity, etc.) of a 26-28 weeker. His blood gasses were aweful in the start even on 100% 02 (PH 7.22, oxygen 18 mm hg, carbon dioxide 64.2 and base excess 3.3). It was three days before he started urinating, he lost over 20% of his body weight and he was on oxygen for the better part of three weeks, on a vent only the first week.

I suspect this is a praying, watching, and waiting game now. What will be will be and we can't guess yet what is in store for my little guy. I am just so glad we have him. I hope for his sake that he doesn't have too much physical difficulty. Growing up is hard enough without adding extra challanges but we will help him the best we can if he does have any. I just wish I could know now what was in store for the future so I could work on making things as easy and be as proactive as possible.

I hate looking at him and touching him and worrying that something is wrong. It is hard enough that he doesn't nurse, I am already feeling a little disconnected because his rejection and refusal to lactch, his dislike of being held and touched and the fact that he sleeps most of the day and night.

Some days I want to sling him and cuddle him and hold him tight despite his grunting and complaining and some days I just let him be happy and sleep soundly in his bassinette and I really miss him. I am still mourning my healthy newborn and if I wasn't pumping and providing Avraham Chaim with milk I think I would be praying hard for another baby so I could have my babymoon and my nursling. It isn't that I don't love and appreciate my baby but I feel very empty, like something is missing. I really wish he needed me.
 
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