- J
- M
When I was about 10 weeks pregnant we found out that Ryver had a high possibility of having Down’s Syndrome. We went through numerous tests to discover that she did in fact have an extra chromosome. I went from seeing just my OB to also a specialist. I had doctors appointments almost every week until I was 32 weeks pregnant and then I began having weekly appointments (sometimes 2 a week). If you don’t know Down syndrome babies have a 50% chance of having a bad heart and more likely to be born stillborn; this is why I was seeing the specialist to check her heart and monitor her closely. We received the news that she had a great heart and we confirmed this news once she was born and a repeat echo was done. This was the absolute best news! We had her, things were great and we took her home. After 12 hours of having her home (she was 5 days old) we rushed her to the ER because of respiratory distress and she has been on oxygen ever since. She spent 8 days in the NICU where we tried to determine the cause of her respiratory issues. We ended up going home on oxygen with a pulmonology appointment. We determined her respiratory distress is due to her having low muscle tone which is a common thing for Down syndrome babies to have. She just turned 3 months old and she is still on her oxygen. We have done sleep studies and we are trying to see how long she might need the oxygen for. It is potentially something she just needs to outgrow. She has home health where 3 different therapies come out to our house (which totals 4 days a week). She has a pulmonologist, developmental doctor, endocrinologist, her pediatrician and we are also in the process of getting an ENT doctor and optomologist. Our girl also has severe reflux and we just spent a couple nights in the hospital last week and got sent home with medication.
With everything going on, only 1 of us is able to work which leaves our income cut in half and all of our medical bills and personal expenses adding up. We don’t know what to expect as she grows and what other bills we will gain. Anything you can help with would be greatly appreciated or if you are unable to help, if you could please just share.
With everything going on, only 1 of us is able to work which leaves our income cut in half and all of our medical bills and personal expenses adding up. We don’t know what to expect as she grows and what other bills we will gain. Anything you can help with would be greatly appreciated or if you are unable to help, if you could please just share.