Juniper our 4th and final baby was born on April 21st at 5:36 am into our eagerly awaiting arms. We were absolutely overjoyed for..minutes.. before the nurses took her from us and started examining her. One of the nurses called for a specialist to take a look at our baby. Once the specialist was there and done examining her he came over to Chris and I and told us things that no parent is prepared to hear. They didn't know anything for certain, but they knew something was wrong and let us know they were going to be calling in another specialist to start running lots of tests.
Chris and I just sat in the room stunned. None of it felt even remotely real.. I couldn't cry because this wasn't real life. I held my baby who looked just like all my other babies and couldn't believe that there was anything wrong with her.
They started with ultrasounds, blood work, and an MRI. One of their concerns was that she wasn't urinating and they were concerned she might have a issue with her bladder. There were talks of transferring her to Orlando (an hour away) for potential emergency surgery. It was at this point I cried for the first time. Thanks be to God her bladder ended up not having an issue and she started peeing. I've never been so happy to change a pee diaper!
However, our baby had been away from us more than with us and my heart was breaking for her because of everything she was going through. Every time she came back she had more holes in her hands and feet and arms, tiny bruises as a lasting indication of all the tests they were running.
We had been prepared by our specialst that it was likely she had a genetic adrenal disorder.
Finally after numerous days of testing the results came back and it made everything real.. we had a diagnosis.. and it was a hard one. Her adrenal glands do not function properly. She can't create cortisol (which is what we use to help fight sickness and deal with stress) and not only that, but her little body wastes salt.. which is extremely dangerous. In a matter of days we had gone from just preparing ourself for adding a fourth child to our family to learning our child was going to have special needs for the rest of her life and has a life threatening disorder.
We were being trained on how to administer her shot when she goes into crisis and the importance of her medications..
After 5 days in the hospital we were released to go home with all of our medications and pamphlets in tow.
We were home for 24 hours before Juniper started acting off and running a fever. We were instructed to take her straight to the hospital ER. Her fever was 101.5 when we got there.
Then began all the testing. She was catheterized, her blood was taken, she was given a X-ray, they tried to put a IV in her.. I counted 7 times they poked her trying to find a vein that would work. They eventually called someone in who was able to put the IV in her head. As bad as it had been to that point it was nothing compared to when it was time for her to get the spinal tap. Her tiny body being held down for this procedure and her cries were enough to ruin me. I've never felt so helpless.
We were admitted and sent upstairs. This is where we spent the next 12 days. It ended up her fever came from a urinary tract infection which is potentially a side effect of her adrenal condition.
With her disorder there are lots of expected hospital stays and ER visits because of how serious things get if she gets sick.
Juniper is such a strong little person, but is going to require a lot of extra care. We have watched as the medical bills are pouring in and we are doing our best to manage it all and work hard to be able to stay on top of it. We are looking to expand our weekend cleaning business as a long term way of increasing our income to help with our new financial needs. Her condition is 1 in 15,000 -needless to say we were completely unprepared for this mentally or financially. As much as we always try to remain self sufficient it seems necessary we swallow our pride and reach out to friends, family and compassionate people for help. Even a small donation will help with our mounting bills, regular blood tests, specialist visits, medication and a savings account for future surgeries that can be necessary with her condition. We are so very thankful at the outpouring of love and support that have been shown to us thus far and we want to make sure that we are able to adequately not only care for our other 3 children, but also obviously our special little newborn Juniper. We would like to thank you for taking the time to read this and we encourage people to become more aware of adrenal disorders as they are not as prevalent as other life threatening illnesses their publicity, funding, and research are far less than other types of conditions.
Thank you again for reading our story and if you would like to donate please know how very much it means to us.
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