After 2 weeks of being in the NICU we still had no answers at all. The doctors had performed a head ultrasound and an EEG, all came back fine. After we held Alayna she seemed to be doing much better. She would know when we were there and when Mom and Dad would talk, she would respond. How could I even think of letting this child go? As the days passed Dr Schneider came to us about a drug he could test on Alayna. A possibility that it would make her better. He thought she showed a lot of signs of Congenital Myasthenia Gravis. Sometimes mothers have this and pass it on to their children, so he had me take a blood test and do another test as well. Dr Schneider stated that I did not look like I had it and did not show any signs, but Alayna could still have this syndrome. I thought to myself this is good, hopefully this is our answer. This is a 100% manageable syndrome with medication. I hated the thought that she would be on medication for the rest of her life, but if it gave her a full life, let's do it!!
I now know why they wanted us to bring clothes in! They wanted to see if Alayna could maintain her own temperature and with us holding her it will give them an idea. They took her temperature before and after, and all was great! So now we can finally dress our little girl. So many parents take the little things for granted. This was a big deal to us and in the right direction!
On June 1st the doctors decided to conduct the 1st test. They were going to inject Alayna with neostigmine and she should show drastic changes after about 15 minutes. Now there are side effects to this medication. It could send her into respiratory distress, so the nurse had to put in an iv just in case she were to go into distress. They would put a medication into her iv that would conteract the neostigmine.
I was oh so very nervous. Anytime something was done to Alayna, I would think to myself, she is so fragile anything could make her take a turn for the worse. In all the uncertainty I never once asked God "Why me?", it was always "Why Alayna?". This journey was not about us and about us living out of our car in the weeks ahead, it was always and always will be about Alayna. It didn't matter to me how uncomfortable I was or how I couldn't smile anymore. The only time I did smile was when I saw Alayna. There were a few times I prayed to God to give me strength to keep going and then after I thought about it I prayed to God to take that strength he was going to give me and give it to Alayna. She needed all the strength in the world.
The test had began. We were to see more spontaneous movement. Now In the 2 weeks Alayna was born she slept ALOT, her main awake time was at 2 am. Within about 10 minutes her eyes popped wide open!!! I started to get excited, but had to remind myself that this may not mean anything. She also started to move her arms more, but not her legs. Alayna has always had problems with moving her legs. Dr Schneider was watching the vent and watching her breathing. The ventilator will show when Alayna initiates a breath herself. Up to this point, she wasn't, she was letting the vent do ALL the work. He started to see the vent change, she was initiating more breaths!!! Of course the doctors in the NICU didn't see a change, but Dr Schneider wasn't convinced. So as the doctors saw it, this test was a failure so we will try again tomorrow.
I was getting frustrated with the lack of support from these doctors and all the negativity. If it wouldn't have been for her nurses giving us hope, I probably would have cried 24 hours a day. So here comes June 2nd, the test time comes and goes and once again they say no changes. They even had 2 nurses come in and look at her and see if they saw any changes. They both said she is awake and moving her arms. This wasn't enough for the doctors to say it was working. Did I mention they didn't call Dr Schneider down for the testing? He was not thrilled when he came to the NICU and it was over. The next day me and Dr Schneider had an 1 hour conversation over the phone about Alayna....
Here we are again back to square one. Will we ever get an answer? Will my daughter be able to breathe on her own? And what about that untouchable dream of getting to rock my daughter to sleep? Will that day ever come? I loved her more than anyone in this world!
Happy Mother's Day to everyone! Although some Mother's today will not be able to hold their child or hug them or never got the chance, they are still a Mother, wish them a Happy Mother's Day!
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