Even before she was here, we were told she would be a high-risk pregnancy and were even moved to a room to discuss possibilities and the unlikely. This was not an option we were willing to entertain in the slightest. Do what you have to do to see that she makes it was all we told the Nicu doctor/ specialist, and we moved forward.
Born on Dec 5th, 2021, Luna Bella [ pronounced be-ya ] Best was unexpected, it seems she was in so much of a hurry to be with us she decided to arrive three months early. She was a tiny thing , weighing only 1lb 11oz, so small she could fit in my one hand and because she was a bit undeveloped it took a team of five nurses alongside a Nicu doctor to get her ready. She had to be wrapped in what looked to me a plastic bag to keep her body temp from falling. She had to be connected to several monitors and a breathing tube to keep constant checks on her heart rate, pulse and breathing.
Being that her eyes couldn’t open just yet and the light would have done much damage she had to have her head wrapped to protect them. It was amazing and heart wrenching to see her in that position knowing all we could do was watch [ mom was exhausted from the delivery]. When she was finally stabilized, she was then moved to an enclosure with a UV light connected to cables and monitors and that was how we had to view her for the first few weeks, all while the nurses kept saying ” she’s going to be a tall one, she’s really strong “. We of course did not see what they were talking about at the time, we were happy to have her and heartbroken that we couldn’t take her home. Little did we know that her fight was just beginning.
Things were going well her vitals were stable for the most part even though she was still in the cradle we were allowed to hold her at times which meant the world to us, then during one of her checkups they gave us the news that there was fluid collecting on her brain and wasn’t draining away like it should, she needed surgery asap to install a shunt to drain the fluid away from her head and into her stomach she was so tiny but it had to be done, and it went well, as time went on that was the first of three surgeries on her head alone that she underwent successfully.
However, because of the pressure built up her entire left side became tight with limited mobility unlike her right side which functions normally, add that to the fact that she was premature her muscles and tendons were also affected. The second surgery was to make a correction to the shunt. She later had an issue because her skull closed too early and was forming into a point, so a half inch by 3-inch-long section of her skull had to be removed to allow her head to form in the best way possible, this placed her in the first of her three cranial helmets to
support and reshape her head. When that was over, we all breathed a sigh of relief but as it happened, she had a few more challenges to face. Her hips were out of place and required correction this resulted in a brace she was to wear for a minimum of 23 hours a day for almost a year, which as it turned out did help but not in the way the doctor had hoped and that meant another surgery to cut the tendons in her inner thigh and rounds of Botox to the hips and ankles to aid with movement. She was then fitted with what was called an A-frame cast until she healed, a time she did not like, she could not sleep with the pain and muscle spasms and all we could do was comfort her as best we could. Then it was back into metal hip brace that she’s currently wearing with promising results to date.
She has throughout her life, been having several different types of therapy to get her to a point where she can crawl and pull herself up [ to a
point], she can eat mostly on her own now and even carry a simple conversation when she wants to. She might have had a very early and difficult start but we all believe that she will get to run around one day. Like the nurses said, from the start she is a very strong girl.
We have to say thank you to the Shannon Daley Memorial fund from the bottom of our hearts for selecting us to receive such a generous gift. We are and will be forever grateful.
