Friday, June 29, 2007

Letter from Addy

Here's a copy of the letter that we sent out to friends and family shortly after Addy was born.

Dear Friends and Family,

I thought I would tell you all a little bit about how my entrance into this world began. As many of you heard we had a few hiccups along the way, so here’s the story:

I was born on May 7th at 4:41 pm. My mom said that my birth went very smoothly and daddy did a great job helping. I was already surrounded by meconium at birth so I was a little congested from the start. Soon after being born and getting examined by the doctors, they noticed a few subtle physical features on my body. My left hand fingers were slanted to the left as well as my left ear was curled and my neck was a bit underdeveloped on the left side. The immediate diagnosis was that I must have been curled pretty tight in the womb and the physical features were a result of that.

I was given a great apgar score and then I was handed off to my mommy and daddy to enjoy. Soon after that I was greeted by grandma’s and grandpa’s all around. This led to our first night in the hospital. I wasn’t eating a whole lot because I just didn’t seem to understand breast feeding quite yet, so mom was feeding me some formula with a Dixie cup, so I wouldn’t get too used to the bottle.

The next evening (day after birth) we were getting ready to go home. I was awaiting my 24 hour baby check and then we were going to be headed home. During my baby check, the doctors noticed that I had Jaundice. They wanted me to stay a second night so they could recheck my levels in the morning and possibly do light therapy if needed. During the night I gave mom and dad quite a scare. I seemed to be having trouble breathing when laid on my back, due to what seemed like congestion. I eventually went to the nursery to be watched and the doctors felt as though I needed an IV for feeding so we could bypass the congestion.

The next morning, the doctors came in to talk to mom and dad. They were very surprised to hear that the doctors were worried for several reasons. During feeding, my oxygen levels were dropping, I was very congested and I was showing signs of not keeping my food down. With all these symptoms, the doctors were now more worried about the physical features as well. They added a few more to the list such as the possibility of a shorter neck than normal, a difference in my tone, broad hands and feet, long fingers and a lot of spacing between my toes when I flexed. They mentioned the possibility that there could be some relation between everything that was going on. They wanted to play things safe and have me transferred to a Neonatal Intensive Care Unit for further testing.

So, on Wednesday, I was transported to the NICU at St. John’s main campus. I underwent lots of tests at first, none of which seem to show very much. The doctors found that I have acid reflux and put me on two medications for that. I also was undergoing genetic testing and they doctors were trying to figure out my feeding issues. When I was taking a bottle, I was having a difficult time coordinating suck, swallow and breathe all at the same time, which brought my oxygen levels down each time. The neonatologist at the NICU didn’t seem as concerned about the physical features. The said it was probably a combination of familial features as well as positioning in the womb.

I spent a total of 5 days in the NICU. I came home on Mother’s Day although that almost didn’t happen. Fortunately for me, I have a mom who teaches kids who have feeding issues in special education and my mom was able to prove to the doctors that she was confident in taking care of me and dealing with my feeding issues. I just needed some consistency as well as someone to help me regulate my feeding.

Since leaving the NICU, I have been seen by several more doctors. At the pediatrician I was found to be gaining weight well. It was also discovered that I have a bifid uvula which means split in the middle. This could be adding to some of my feeding issues. We have an appt. with a pediatric ear, nose and throat doctor in July as well as a plastic surgeon who works in the cranio-facial department at Children’s hospital. I have also been seen by an orthopedic doctor who has since referred me to a pediatric occupational therapist for possible hand splinting and range of motion exercises. Each doctor that I see still continued to comment about the physical features and seemed to have some concerns that there could be a possible syndrome. The original genetics test have since come back normal, however those were just a basic snapshot of my genes. I then was seen by the genetic specialist at Children’s hospital and further genetic testing is currently being done. No guarantee that the tests will show anything, but if they do we might be a step closer to figuring this all out. The genetics doctor was concerned about my hands and felt as though I have a little too much muscle tone throughout my body. I will also be getting physical therapy as well as the occupational therapy.

Due to all of the medical issues, I now qualify for Early Intervention services through our local Intermediate School District. These services will include a health care nurse who will follow me for developmental milestones. I also may will be evaluated to see if I qualify for OT and PT through Early Intervention. These services will begin in the fall.

All in all, mom and dad continue to worry about me, something they will do for the rest of their lives’. I continue to make progress with feeding and am an alert and attentive little girl. I know that my mom and dad will continue to take good care of me. If I haven’t already, I look forward to meeting all of you. Thank you for all your thoughts and prayers over the last several weeks.

Addison Christine

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