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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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I'm really sorry that you are mourning. I went through a similar period with my daughter, and it was really, really difficult. The best advice I can give is to hold him and love him. Pumping also really helped me...I felt that at least I was doing something.

As for yor muscle tone question, muscle tone varies and changes a lot during the first few years. In general, kids with CP start out floppy and then start to get kind of stiff, especially in the arms and legs. Some children, especially those with hypoxic injuries, are very stiff initially and then start to get floppy later in. These children often arch a lot and sometimes it appears that they have good head and trunk control because they tend to hyperextend all the time. This is a pic of my dd at about 5 months of age...it appears she has good head, trunk, and arm muscle tone. http://www.photos.agrawalkids.com/ka...na2/pushup.jpg She could even roll over at this age. Eventually this tone disappeared. In my dd's case, she became real floppy in her trunk and can no longer hold up her head or trunk since about 18 months old. Her case is severe, though, with a very prfound injury to her brain.

I guess what I am trying to say is that tone changes A LOT during the first two years. It may change for the better, and it may change for the worse. It is really hard to know. I would suggest having your child folowed by a physiatrist and maximizing muscle tone treatments available to prevent any damage from occurring. My dd has had treatment with low-dose valium and other muscle relaxants, baclofen, and botox, as well as bracing.
 

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Quote:

Originally Posted by Liba613 View Post
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.
This is how I felt with my 33 week preemie after I brought him home (except he was nursing) I just felt minimal connection with him, and I was so sad about it. I had never met a baby who was happy to just lay there and fall asleep. I'm sorry
 

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Quote:

Originally Posted by Liba613 View Post

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 really wish he needed me.
My 25 weeker went through similar problems. She is perfect now ( 9 yr old). Her gross motor skills were very delayed until she was about 3, but you would never know it. My 34 weeker had delays also, until about 14 months. She is now 3 & sassy! You are exactly right, it probably is just a praying & waiting game. We don't know what God has in store, but He does. He has known since the beginnning of time & we just have to pray that he will give you peace during this time. That is all that got me through. And he does need you. He needs you more than anything, he just doesn't realize it yet. You are his rock & his hope. My 34 weeker is much more "cuddly" than my 25 weeker. It kind of makes our hugs & touches more meaningful & special since she doesn't do it all the time like her sister. God has an amazing plan for you babe. And you are such an integral part of that plan. God Bless You! You are both in my prayers.
 

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First off prayers for you and your son. Secondly, I know what you feel about the bonding. I still don't feel completely bonded to my daughter and she's 7 months old, 4 months adjusted now. It HAS gotten better, but baby steps. She has severe reflux and delayed gastric emptying and is in pain ALOT so she screams and cries alot. I so want her to be healthy and happy, but it's also hard to be around the incessant crying. I felt and still do very empty. I had to stop nursing (she had issues nursing anyways) because I had to go on medication for depression which were contraindicated for nursing. I feel like this has alot to do with my bonding issues ans dare i say "resentment" Hang in there. It does get easier and you will be in my prayers!
 
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