wolfhirschhorn.org

Hi all I’m new to this site and just wanted to introduce myself and my two boys. I’m a young mom with two boys aged 22 months & 10 months. During my first pregnancy, they were worried that my baby wasn’t growing properly, I had multiple growth scans and at 24 weeks they told me my baby had a cleft lip and a hole in his heart, they knew something wasn’t right but I refused further tests as the outcome wouldn’t make any difference to how I felt about my baby. They gave me steroids and induced me at 37 weeks, my little man was born the following day weighing 3lb 12oz. We was in neonatal for 16 days. He was 3 months when he needed his first operation to repair his cleft lip, it went very well. Tyler was 7 months when had his heart operated on as he has pulmonary valve stenosis, that also went well. Tyler was diagnosed at 11 months with; WHS, translocation of 4p and 8p, Epilepsy, large ASD, mild hearing loss and severe reflux. Things started to deteriorate and Tyler wasn’t gaining weight 🙁 He was awaiting an operation to repair his hypospadius, he was on the waiting list and one day I received a call from the hospital saying they had a space for Tyler the next day, it was a shock. So I took Tyler in to hospital got him all ready for surgery and off he went, when he came back from recovery he was fine, we went home the same day. A few days later Tyler became really poorly, I took him to the hospital and they admitted him, he had IV drips, NG tube and still his stent from his repair. They didn’t know what was wrong with him and took a load of tests including a lumbar puncture, CT scan, MRI, EEG, ECG and bloods. They told me he had ‘Rota virus’, an infection in his tummy due to the operation. After a week of being in hospital Tyler came home and was then his happy smiley self. Then for months Tyler wasn’t gaining weight he stayed at 12lb for a while, losing weight and staying the same, the dietitian tried several milks but nothing seemed to work, Tyler has severe reflux and wasn’t on medication so everything he had he was bringing straight up. September 2013 Tyler was took into hospital for his reflux and failing to thrive, they sent him home with an NG tube which is working really well, Tyler is now putting on weight, and is also on Omeprazole for his reflux. Early October 2013 Tyler took a turn for the worst and became very ill again, he stopped breathing, I called an ambulance, when we got to hospital they took him straight into resus, it was so scary I honestly thought I was going to lose my baby, they did a chest xray and told me he had severe pneumonia, he was on IV antibiotics and oxygen. It was a scary week but my baby made it through the traumatizing time and was back to his happy cheerful self once again. We’ve been home for 4 days now and he’s doing so well. Tyler cannot yet sit, crawl, talk or walk but he’s such a little star. Thanks for taking your time out to read this everyone 🙂 x