There was this very upbeat, talkative, friendly mom that stayed at the Ronald house. She went to the NICU every day, the rest of her family would visit on weekends or when they could. They are a very admirable family to watch and learn from. The strength they have in their faith is so strong, I could only wish to be able to have that type of strength the whole family shared.
I met the mother to Isiah again in the van on our way to the NICU. She turned around and started asking me questions and sparking up a conversation and telling me we were in the same pod. I don't know what is wrong with me that I literally noticed no one around us?! But we had May with us, and Everyone noticed her, so therefore we were noticed. Anyway, this mom and her son were our neighbors in the NICU! She started telling me her story on our way to the NICU.
Her and her husband thought they were done having kids. They just had their oldest graduate high school, and they were prepared for their next steps in life. But God had a different idea for them, because come the summer of 2013 they found out she was pregnant! She was watched very closely because of her age, and soon they found that her son had tested positive for Down syndrome. They soon found that he had an enlarge heart which then, as the pregnancy progressed, fluid was beginning to show up around the heart. When they found that she was sent to be induced.
After he was born, his white blood cells were higher than normal, even for babies with Trisomy 21. He had a disorder which caused leukemia like white blood cells and they were trying to figure out the amount of chemo he would need to receive. By doing this, that should also help with the fluid around the heart.
I had met her after all of this had already happened, and where they were at this point was working on trying to get him to eat, monitoring his breathing and talking about moving to a gtube. He was working on taking bottles, but then started getting these choking breathing difficulties. They had looked at many different reasons as to why this was going on, thinking it had to do something with his feeds. They had started fortifying his breast milk, and considered the possibility of him being allergic to something in the feeds. The mom, Kat, had then went off all dairy products to try to solve his feeding issues.
These were the things she was currently going through with her son when we met. She had been in the NICU for a little over a month before we got there. She was one of my greatest support systems! I loved talking to her and May adored Isaiah, and would constantly go to their pod and see her and the baby. We were able to complain together about the doctors and their decisions, and which nurse was difficult to work with. it was nice to have someone that was so Right There in the same position you were in.
Their journey went on for awhile during their stay in the NICU. His feedings were an issue, gaining weight, and breathing. They finally decided they would go ahead with the gtube and about the time that he was schedule to get the procedure done he got a stomach infection. Sometimes mother knows best and doctors should really take that into consideration- it is possible the infection occurred from trying to fortify his milk again after stopping. After this, it seemed like every time he was ready for the surgery an infection or something would come up! But finally he was able to go in and get his gtube done.
Next process was to get him to be able to tolerate his feeds and be able to head to home. By the end of the month, they were on their way! It was so sad to see her go, yet it was so wonderful! They had spent 3 months in the NICU, and that was only the start of the journey.
He went home and would do good but, as always, things would come up with breathing, feeding, not gaining weight, one thing after another. By the time we were ready to leave the NICU we some some familiar faces back in the NICU. They had returned, which is amazing since usually once a baby has left the NICU they don't get to come back, but he had super mom to help him get the doctors that know him best! He had been aspirating and got pneumonia. They also knew his trachea was getting compressed by an artery and had that to look into yet! They were able to go in and remove the artery to try and help with the aspirating and other issues that were coming up. They were in the NICU a second time for about 2 weeks! Eventually were on their way back home!
Back home the family continued to have issues come up. Mostly now with breathing and not gaining weight. They were giving him the term failure to thrive if he wouldn't start gaining weight soon. This battle went on all winter into spring when they eventually end up back at childrens hospital to discuss what else they could do.
The next thing that childrens hospital wanted to do was to place a trach. His lungs were not good and he was using all his energy to breathe, which is why they figure he wasn't gaining weight. Their trach theory though, was not promising it would fix everything, and with the possibility of it not curing everything they decided against the trach, which I think was best for Isaiah too, and were then sent home on palliative care. If you have never heard of palliative care before, well one you are lucky, but it is also basically a support system to go home with extra care to make your child comfortable as you wait for them to pass on. Almost like hospice care for the older generation. Although palliative care promised me it wasn't this, it is still the process of trying to make things easier for the family as a child has a life threatening condition.
You can imagine a parents feelings about being told their child will be on this type of care, but Isaiah is no ordinary boy, and their faith has gotten them through a ton, it hasn't failed for them yet because, a new doctor comes into the picture and decides to put him on steroids to help his lungs open up. It does the trick! Now a month or so later, he is growing and gaining weight like crazy!!! He is no longer on the failure to thrive list!
He is one who will grow up to do the most amazing things! He has the most amazing family to cheer him on, it would be impossible for him to not accomplish only the greatest things!
Grow little baby grow, we are all on your side!
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