Joselynn was born at 39 weeks exactly, but little did we know the trouble she would endure as soon as she arrived. Joselynn was born with an enlarged heart and pulmonary hypertension. Theres was nothing the nurses could do for her. Oxygen was not helping. She was on 100% oxygen and her blood oxygen level was still only at 70%. My little girl was dying right infront of us. Our only option was to put her ECMO (extracorporeal membrane oxygenation), like a heart and lung bypass machine to give her tiny body a break and allow it to rest and heal. She was on ECMO for 5 days. After she came off the machine she started doing better, but was set back when her lungs kept deflating. She had so much mucus in her lungs from being intubated she just wasnt able to clear the mucus out on her own. So the NICU nurses had to loosen the mucus with a machine that sent low decible vibrations and suction it out. After 2 weeks went by she started getting stronger and stonger. She was able to be held. They took the tube out that was breathing for her. Finally and end was in sight. She was able to eat. She wasnt very good at eating but she was learning. Then a set back again. A nurse found blood in her stool. They immediately ran tests. We found out she had NEC ( nectrotizing enterocolitis). Luckily she had the kind the doctors said wasnt as bad. Ready?... So then we find out she has sepsis (blood infection). Well since shes on all kinds of medicine it just so turns out that the antibiotics thats shes on for NEC will also treat the sepsis. So they put her on strong antibiotics and said she wasnt allowed to eat for 14 days. This was not easy for her since she had just gotten used to eating. After 14 days are up and she is finished with all of her medicine the doctor said she can finally go home. So as we continue to sit in the NICU with her all this time theres not much to do. So I would look back at pictures of her and think about how far shes come and how much shes had to endure in her short little life. I had noticed the shape of her head. It looked different. Almost like her forhead was flat on one side. So I said something to the doctor and he had a craniofacial doctor look at Joselynn. Sure enough... She had yet, something else wrong. This poor baby girl. What else could happen to her. Shes been through so much already. He said she had Craniosynostosis.
What? What does this mean? Its such a big word and I've never heard of it before.
Craniosynostosis- Premature fusion of an infants skull.
1 in 2000 babies are born with it.
Joselynn has right coronal craniosynostosis. This suture shouldnt have closed until shes about 24 years old. The only way to fix it is surgery. The waiting game is hard. You think and think and think. Trying to figure out how things are going to turn out. At last NICU is just a memory but now the thoughts of her up coming surgery are eating us alive. How are we going to cope with this? What about the medical bills? Again? How are we going to pay them?
Please help us get this MIRACLE baby the surgery she needs to allow her brain to grow.
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