Not What I Expected

Josh was born on December 11, 2015 at 1:20 p.m and he weighed 6lbs and 7oz. He was beyond perfect and everything and more than I'd hoped for. It was exhilarating finally meeting the little boy I had written to. So when the doctors came in our room and did the routine checkup it burst my bubble when I saw them whispering and had faces of concern. They mentioned how his wrists and ankles bent in and they weren't sure what the cause was but we needed to keep a close eye on that. They also said Josh's eyes "wobbled" and he couldn't pass his hearing test. We were to watch if anything got worse or better and get his hearing tested at another time.  So we were able to take our little Josh Carter home with us but it wasn't at all what I expected it would be like.

The first two weeks at home with Josh honestly were the worst of my life. Before I explain I will say I was immensely happy to have my newborn and we had many sweet moments together. For the first two weeks I stayed at my parents house every night because Christian worked third shift and I wasn't comfortable staying home alone with the baby. Which made me really insecure because shouldn't a mother be able to take care of her baby overnight? Well I thought so but I was in a lot of pain for the first couple months. Exhaustion was my constant battle. There is no way to get good sleep in between the two hour feeding time and even worse, Josh never slept! There was one day that I was watching Josh and I felt the exhaustion hit me like a brick wall, and I fainted. But I stayed down for 20-30 minutes. I fell asleep there on the living room floor. It was terrifying and I remember waking up and seeing Josh in his swing just patiently waiting for me to wake up. I told myself I wouldn't let it get that bad again because it was unsafe for Josh and myself. Another struggle was that we couldn't get breastfeeding down! Now I know it was due to medical reasons but at the time I just thought I was doing it all wrong. From the beginning I was very determined to breastfeed Josh and I was feeding him every two hours day and night. But when we went to the first doctor appointment he had only lost weight which they say is normal for a baby to drop a little at first and then gain again. So when we went back that second week and Josh had lost even more we were all very concerned. I felt guilty and frustrated and annoyed with myself. Around this time is when we noticed a couple other symptoms. Josh has very low muscle tone and his eyes darted back and forth but his first pediatrician said it would get better with development. Just like all the other little problems we were finding. She also wanted to get a swallow test but Josh wasn't having any reflux issues and hardly spit up so we decided to get a second opinion.

Josh's second pediatrician said he didn't think he needed a swallow test so we decided to wait. He was about a month old at this point and this is when I waved the white flag and gave up breastfeeding. It had to be the toughest decision still to this day. But once Josh was getting formula he started gaining weight! I was so relieved that every ounce he gained I cried. This second pediatrician did find more concern in his eyes and sent us to an Neurologist at Riley. After looking over Josh she thought it would be best to see an Ophthalmologist. We saw them when Josh was two months old and they told us he had nystagmus, which is darting back and forth of the eyes. They did an eye test and said Josh had no pigment in his eyes. They then diagnosed him with Ocular Albinism. Which mean he would be very visually impaired and his eyes would be sensitive to sunlight. My heart was broken when they told me he could only see shapes and colors and no detail. With Ocular Albinism can also come hearing defects. I began to think what this may mean for his future and how we will need to adapt for Josh. Getting this diagnosis explained some of his symptoms but didn't fully connect the dots. He was still only slowly gaining weight even though I was still pumping him full of liquids and it didn't explain his low muscle tone. 

One day Josh had the hiccups pretty bad, but looking at his chest I noticed something just wasn't right. One side of his rib cage was larger than the other. Then I had him on his tummy and noticed his spine was clearly curved. So when we saw his pediatrician they took an x-ray and it showed Josh has a 54% curvature of his spine. He had scoliosis due to the low muscle tone. We had just started Josh in physical therapy as well so I spoke with his therapist and she recommended splints for his wrists and ankles and most likely would need a brace or cast for his scoliosis. Christian and I decided we want him to go up to Shriners Hospital in Chicago for orthopedics. The wait time to see the spine doctor was a couple months but those were very busy and stressful months. At this point Josh is 5-7 months old. Everything in these months were and still are a complete blur. Josh was still only gaining 2 oz every month and his pediatrician was starting to treat me as if it were my fault and he didn't believe me that I was feeding him properly or as often as I were saying. This  brought back many emotions from when Josh was first born. It was also infuriating, Christian and I were busting our asses trying to make Josh healthy and he thought we were just slacking off as parents. This was very upsetting. On top of worrying about my baby's health, I had to worry about proving that Christian and I are good parents and make Josh's health our priority.  Soon after this we were able to see Josh's neurologist again,whom I like very much, for a second checkup. At this appointment she decided Josh needed a head MRI as soon as possible to rule out any issues with the development of his brain. When she said this I thought, "but if there were problems with the development of his brain wouldn't it be more clear to us?". Little did I know the results of the MRI would finally connect all the dots for us.