Those beautiful eyes

May 19, 2004……Not only was this Tony’s and my 3rd wedding anniversary, this was a day we will never forget. Tyler had his scheduled 6 month check up with the ophthalmologist. I was at work so Tony took him. Just like with the shunt infection, I knew this wasn’t going to be a good appointment. Let’s face it, Tyler was 6 months old and hadn’t made eye contact yet. His little eyes fluttered back and forth. He couldn’t focus. It didn’t take a rocket scientist to figure this out. But what the actual diagnosis would be, was anyone’s game. Then I got the call from Tony at work. He was diagnosed with nystagmus, or the eye fluttering, CVI or Cortical Visual Impairment, and officially legally blind. My heart broke and I couldn’t hold it together at my desk. My manager at the time happened to walk by my desk and let me go home to be with my boys. I had no idea what any of these things meant. I needed to hug Tyler. I needed to hug Tony. Again, why are these things happening to Tyler? What in the world did I do to deserve this? My precious baby can’t see! Why??

I researched CVI and this basically means he can only see in quadrants. He doesn’t have the ability to see things completely like we do. This is a result of the brain bleed and the damage done to his brain. We were given a prescription for glasses. Glasses on a 6 month old! Ok, now this is ok to me as every member in my family, as well as Tony’s, wears glasses for one reason or another. This is perfect while trying to teach him that its fun to wear glasses. And by the way, have you ever seen anything so cute before:

With these diagnosis’, we were still in the “wait and see” mode. The glasses should, and have, slowed down the nystagmus. There is a noticeable difference when he has them on compared to when he doesn’t. The CVI was a completely different beast. In some cases it has improved. In others, it has stayed the same. The good news was Tyler’s eyes structurally didn’t have any issues. So if we could get the damage corrected in his brain, there was a small flicker of hope that it too could be corrected. The legally blind diagnosis would be with him forever, unless of course the CVI corrects itself. So we wait and see and continue to love him more and more for all that he is and all that he is teaching us! 

Side note, Tony and I did go and celebrate our anniversary the following Saturday, but couldn’t really enjoy ourselves as we were away from Tyler. We stayed over night at a hotel and were up and out the door at 8AM heading back to get Tyler. It was our first time away from him and with this bit of news, we just couldn’t bear to be away.

Home again….

Well, after 2.5 weeks in the hospital, with a brand new shunt now in on the side of his head instead of the front and after being told he needed a smaller shunt NOT a larger shunt like we thought, we were able to take him home…AGAIN. Knock on wood, this has been his only shunt revision to date. At his last check up in April, we were told we are out of the woods for any more shunt infections. Now we have to worry about shunt malfunctions. Something else to worry about. Joy oh joy. 

What a difference having a new shunt made. He smiled and giggled all the time. Actually he still does. He is a very happy kid.

Happy to be home AGAIN!

3 weeks of fun

Besides the resevior that was protruding out of his tiny head, Tyler looked and acted like a typical baby. He ate, he slept, and he even played with a couple toys. I used to dress him in a couple different outfits a day. He was so cute. He IS cute. 

Tyler & Daddy at home

We had a scheduled appointment, on a Friday,with the neurosurgeon to check the size of his head. My mother came to the appointment with Tony and I. We arrived at the office and Tyler started crying…and didn’t stop..ALL WEEKEND! The doctor wasn’t satisfied with the size of his head and wanted to put a different size shunt in his head. This was something we were prepared for but were so sad. We have only had him home for 3 weeks. So we leave knowing we will have a call from the nurse to schedule our next surgery. 

As I said, he cried all weekend. I had this HORRIBLE feeing something was wrong. He wouldn’t eat. He would only sleep for 10 – 15 minutes at a time. He wouldn’t let us put him down. Then his fever started to spike. As all frantic new parents do, I called the pediatrician. They said the couldn’t see him until it reached 102 degrees! 102 DEGREES! Are you kidding me. So we sat and tried to console him as much as we could. Then Sunday night, he started to throw up. He was clearly displaying signs of a shunt infection. This couldn’t be happening. But it was. I just knew it.

Monday, since his fever did go up to 102, we went to see the pediatrician. He decided we should go to the ER to have him checked out “just in case.” So off to the hospital we go. I called my parents on the way and they met us there. The neurosurgeon came down and he drained some fluid out of the shunt to test for an infection. He was gone what seemed like hours. All the while, my little boy was still crying, throwing up, and trying to sleep when he could. I thought I was going to be sick but I was trying to hold it together. We saw the doctor come around the corner and I just knew what he was going to tell us. Sure enough his shunt was infected. He needed emergency surgery to remove the shunt, have his fluid drained externally for 2 weeks, then he would have another shunt put in. 2 more weeks in the hospital. I couldn’t believe this was happening.

Why couldn’t he have the normal life he deserves? Why couldn’t we have more than 3 weeks with him at home? Why couldn’t I protect my baby boy?? These and other thoughts did, and some still do, run through my head over and over again.

Tyler FINALLY comes home!

12/29/03…not only is this my brother’s birthday (he turned 24 that day), but it is the day Tyler FINALLY comes home. He spent 49 LONG days and nights in the NICU. He had 2 major surgeries while he was there. First he had a resevoir placed in his head to help drain the fluid and blood away from his brain. 2 weeks after that, he had his first VP shunt placed in his head. This helps drain the fluid to his stomach for the body to handle, as it normally should. He was able to leave without any medical equipment necessary. We didn’t need oxygen tanks. He didn’t need a G-Tube as he was slugging down a whole 120 cc’s of formula when we left. He didn’t require any monitors. He was able to come like he should have, 49 days earlier. We were both relieved and scared at the same time. Like most new parents, we stared at him in our house and thought “now what?” But those words had more meaning. What we were really saying is “We have no nurses to tell us what every little thing means. We have no nurses constantly monitoring his temperature and heart rate. Are these things we are supposed to do? When do we know to increase the amount of formula?” I know there isn’t a handbook for new parents. But there DEFINITELY isn’t one for parents of special needs children. Where do we go from here???

11/10/03…Our Journey began

After being in labor for over 36 hours, the time had arrived for our precious baby boy to be born. Yes we were one of millions of couples that found out a head of time what we were having. Something to note is Tyler wasn’t supposed to be born until 12/1/03, more than 3.5 weeks later. So we weren’t quite prepared for this.

I had to have a c-section and as soon as they took him out, the words no parents want to hear is, there is a problem with your son’s head. Its large. We laughed as we figured it would be given his ultrasound photos, and the fact that my husband stands at a 6′2″ stature. But no that wouldn’t be the case. We were told it was medically large and he had to be rushed to the NICU. The NICU? What is the NICU? We weren’t told, or shown, the NICU in our birthing classes! Where were they taking him?

Something else to know, I ended up having serious complications after he was delivered. To the point that I almost lost my own life, twice. However, being the detemined, and possibly stubborn girl that I am, I certainly wasn’t going to let that happen. I did, unfortuantely, miss out on the first 6 days of Tyler’s life. I did miss out on giving him his first bottle, changing his first diaper, dressing him in his first outfit, giving him his first bath, and more importantly tucking him into bed the very first time even if it was a NICU crib. These things still leave a hole in my heart that can never be fixed.

Enough about me though. This is about Tyler. We were told he suffered a stroke in utero which caused a massive brain bleed. This resulted in him developing hydrocephalus, or water on the brain. He lacks the abilty to regulate his spinal fluid. There was such a significant amount of brain damage we were told he would never roll over, crawl, walk, talk, see, hear, eat, or grow…if he lives. IF HE LIVES!! Who says that?? We couldn’t process that information nor did we want to believe our precious baby might not live!

Here is picture of him when he was in the NICU. He is actually 12 days old here. We used to have to hold him on a pillow to keep his head safe.

Dadda and Tyler on day 12