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Reduced muscle tone

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Beckyimogen Thu 25-Jan-18 02:04:47

Hi there.
I think im after some reassurance please, maybe guidance, defiantly not any scary stories iam already anxious. Sorry its a long storey but i need to explain.
LO 18 months old, 17 months corrected as she was born 2 weeks early and apparently potentially born 4 weeks early as i was induced due to high bp. Post ventouse delivery, no initial abnormalities established with LO, she did have heart murmur (which is now fine but stressfull at the time).( retained placenta, cord snapped soon as LO delivered, theatre remove it, two units of blood, paracetamol for high temp and plenty of iv fliud = 1 tired momma).
Anway She didnt lach on, so to avoid confusion i tried cup feeding untill my milk came in but she didnt get on well with this. Then I discovered she had a tongue tie, and decided to proceed with the procedure to get it cut to helo with the breast feeding, however during waiting for this she was ng tube fed every 2 hours, which stressed me out completely as thought i was failing as a mother already. Post tt procdure she still did not lach on. In the end after 3 days of trying, cup feeding and ng feeding i gave up, and expressed into a bottle for her. This was a nightmare in its self as we had to get teats small enough for her tounge which wouldn't always go over the normal teats. While in hospital i noticed she had a floppy arm, in panic alerted the pead doc, but i was dismissed as an anxious mother and told her reflexes were fine, but something wasnt quite right to me. she wasn't feeding well "apparently" only taking 2 0z every 3-4 hours, (i explained she was only tiny 6.4lbs born, then went to 5.12), clearly expected her to tolerate that amount .They put the fear of god into us and said she could have learning disabilities due to her poor feeding issues, but i said if she was on my breast how would u know what she was drinking and it could be she is playing catch up being prem. Any how me and my partner tried our hardest for a total of 12 days in hospital, to feed her every 2-3 hours, but she wouldnt always have her daily recommended intake that we needed to reach before she could be discharged. We were a mess by the time we got home. Convinced she was a prem baby and "under cooked" we liked to say, we thought she may take a few weeks to catch up. Fast forward 2 more weeks, still a nightmare to feed, hv recommending baby lead formula feeding, but when we did this LO would still only be drinking a few oz every 2-3 hours, and then being sick.I was going insane and hv again had me down as a anxious mother, rightly so at this point. I was no way depressed and loved my LO, but was very anxious when it came to feeding time. We had it drilled into she should be drinking a certain amount. We tired reflux milk, anti colic/constipation milk, coileaf, gavison, 3 types of bottles with 3 types of teats all with gp, hv no help what so ever. Baby masssge groups, baby yoga.She slowly got to the 9th c on her growth chart, but would never take more than a 4 oz bottle. Best thing i did was wean her at 5 months old, she was more alert, her weight increased, obviously, i was more relaxed, and she was getting her milk. Development has been ok ish i think.
She was smiling at 4 weeks, sitting fully at 6/7 months rolled fully by 8/9months, crawling at 10 months standing at 11 months walking fully 14 months. However at 7 months old she had a wobbly head, hv fobbed me off and said nothing to worry about but i waa so scared, i went to the gp crying explaing all of the above and what an experince we had. He was amazing, he agreed she had some stiffness and referred her to the Paediatrician, who agreed she did have weak neck muscles. However she was not totally convinced it was anything to worry about. Naturally i was worried about cp and other things, but she didnt think this was the case, and didn't want to put LO through the drama of a ct scan, instead She referred LO for genetic testing, but by the time the appointment came through her head wobble was gone, and the tests were not carried out, all to my relief. We went back to the paed doc who told us she had reduced muscle tone, and this was normal in prem babies and they dont diagnose it any more as it gets better with age. Feeling relieved we went home slightly more relaxed, i wished this was picked up sooner at the hospital, as this reassurance was all i needed as i knew some thing wasnt quite right. After Googling hypotonia i realised this could of being a reason for her poor feeding? Or maybe it really was because she was just a little and often prem feeder, whith a tounge tie and reduced muscle tone, and does not have learning disabilities like one doc thought!! But im getting this something isnt quite right feeling again, and im trying to suppress it because i over thought things last time, however LO has been walking for nearly 4 months now and is still unsteady on her feet. She is still tiny, in some 12-18 month clothes,but only a size 3 in shoe. She is in walking shoes now but only for the last 2 months. She darts around (in a straight line most of the time), but its like she isnt looking where she is going, and is drunk walking. Some times she can be standing still, turn, looses her feet, wobbles and falls, she is straight back up and again and runs off, but people have commented on it. She is such a happy baby, plays well with others, eating well, trys her best with a spoon and fork, sits at her table to eat now, saying a few words but then seems to forget them. Waves hi and bye, knows where her eyes and nose are, and which cabinet the crips are in. Am i over worried/ thinking? Any reassurance or experience with reduce muscle tone would be a big help, as i seem to be the only one i know who knows about it. My friends with babies never heard of it, and tbh i havnt spoken of it again until now, but i am worried. We go swimming to strengthen her legs, i brought her a mini trampoline july just gone in hope she will use it this summer abit more. Can i be doing anything else,? Or should i wait and see? Much appreciated in advance. Xx

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