NameChangeCuddleBums Thank you, we hope so too.
When did you first know there was a problem? Does she go to nursery? Wishing her many happy years smile
When I was pregnant we did get her heart monitored twice as they thought there was a beat skipped but it turns out that was an issue with the machine, so no worries throughout pregnancy. I went 10 days over and had to be induced, she was born purple, struggling for breath but also had the cord around her throat. Doctors cut the cord and brought her to be suctioned. All was fine, still very purple and a bit sleepy but was told to keep her warm. She was born in the afternoon but we stayed in that night just to keep an eye on her. She fed straightaway for a whole half hour with a strong suck but then I stopped so I could have a coffee, she never fed from me again. It was very late and I hadn’t stopped holding her and had noticed she was very sleepy, didn’t cry, wouldn’t feed, had bubbles constantly around her mouth and when I went to change her nappy I noticed she was taking really deep breaths causing dents in her abdomen. I called someone over and explained about the feeding etc I hadn’t really registered her breathing if I’m honest, she got some colostrum from me in a syringe and still my baby wouldn’t take it, she popped open her all in one seen her breathing, picked her up and walked off saying “I’m sorry I have to take her.” That was it, she took her. After sitting for ages wondering what was happening I went and begged to see her, I was told I couldn’t and it wouldn’t be wise for me to be in the room, I begged and demanded to be brought to her. They took me into the examination room and that’s when I heard her screaming, there was blood everywhere from them checking her, her stats were on the screen above and there was flashing and lots of noise and concerned talking. I broke down and couldn’t breathe so was taken out again after a while. At around 5/5:15 in the morning someone came to me and said they know it’s her heart but they don’t know what’s wrong and she isn’t doing well. They told me to ring my partner and tell him to get there as quick as he could. It was now his birthday, I rang him at half five to tell him something was wrong with her heart and to get there quickly. It was the afternoon before we found out what was wrong.
She doesn’t go to nursery yet, her birthday falls after the cut off so will be going next year. Last year we got her into a special daycare ran by a paediatric consultant nurse, it’s been brilliant, she gets to interact with other children and even sees some with tubes so feels she can relate. She loves going and has so much fun and has come on so much since starting. She was there today and comes home so happy. She only goes twice a week because that’s all we can really afford right now. But it’s so good for her.
Is she on tacrolimus and prednisolone? My son had a liver transplant and these are his main drugs.
She is on tacrolimus with a dose that can vary dependant on blood results. She was on cyclosporine but it didn’t agree with her (I may sound awful but I’m glad it didn’t work for her as it makes anyone who takes it very hairy, just the short time she was on it she had gained a lot of hair, we already have hairy genes so not good lol) she took to tacrolimus like a duck to water.
Hopefully these answers aren’t too long, I think I get carried away remembering things.