Wednesday, February 10, 2010

Trey's story of strength and survival...

This is long, but so are the journeys Trey has been through! If you don't want to read it that's fine, but if you do read it PLEASE leave me feedback. I wrote this to be published in a book of hydro stories a friend of mine is putting together....

Trey’s Story

I am made to be a mom. I love having kids, being married and believing I can help make this world better by raising amazing well rounded children. With the birth of my first son Ryne Carter November 18, 2004, my dreams were fulfilled. It took us 13 months to conceive him and when he was born my heart was fulfilled. My husband is a police officer and I worked for the State of Florida as a child welfare counselor. We had seen so many children hurt by their parents’ mistakes, selfishness, and ignorance, we knew we would give our children everything they needed and would live for them. Ryne was an amazing baby. We loved him with all we had, but our family still did not feel complete. When Ryne was 16 months old we decided we would try to expand our family. It took us 2 years to conceive Trey Alexander, the pregnancy and Trey’s life was a struggle from the beginning.
At 6 weeks pregnant I began to bleed, so I went to the OB, everything looked okay, but he wanted me to come back next week for another ultrasound. I continued to bleed and went back for a follow up ultrasound. At this appointment my life changed forever. I was told my baby had died and I needed a D&C. I was devastated. My husband, a courageous strong police officer, had lost a part of him. My mom who was with me at the doctors kept saying “maybe everything will be okay, you never know.” I yelled at her. I told her my baby was taken from me and I didn’t want to hear her false hopes again. My baby died and I just wanted to deal with it. The day before the scheduled D&C I went in for one last ultrasound. As soon as the machine was turned on I saw him. I said “Wait, there is a baby!!” No one said anything, after what seemed like 15 minutes the doctor said “In my 20 years of practice I have never seen anything like this, your baby is measuring perfectly and has a heartbeat.” I sobbed, my mom cried, even the nurse began crying-My baby was alive. I was told I had a subchorionic hemorrhage, it was very large and it was possible that while my body was shedding this “blood sac” it would “shed” the baby also. I refused to bond with my baby; I thought for sure I was losing him-Again. I bled for 5 months, at one point going in for an ultrasound the doctor said the baby’s umbilical cord was connected on the side with the bleed and he may not get the nutrients he needed to survive-yet another reason not to bond with my baby. Around 6 months I went in for the anatomical ultrasound and I saw it before anyone-I announced to everyone in the room “It’s a Boy!!!” At that moment I knew he would be okay and he was mine. No matter what he was my heart. He was perfect, the bonding began immediately. The remaining 3 months of the pregnancy went by with no problems. It was a perfect pregnancy from that point on. Labor was difficult, I had delivered epidural free with Ryne and was determined to do it again with Trey. After laboring for almost 2 days, and finding out my baby was coming out the wrong way we opted for an epidural. It was perfect! I felt no pain, but could feel when to push, laughed during pushes-it was wonderful. After I received the epidural the doctor did an internal turning of Trey. He warned us when I gave birth the baby would have a large head and be a big bruise due to turning him. But we didn’t care-Trey was absolutely perfect when he was born. An amazing 7lb. 8 oz. baby boy as beautiful as he could be. Due to the extremely large bruise he developed jaundice (his body was unable to break down the red blood cells from the bruise) and was on phototherapy lights for 7 days, taken to the hospital daily for heel pricks, he had a total 13 heel pricks since his birth. This was a rough time for us; I developed PPD so my husband had to take care of Ryne. But our strength as a family would be tested again. All I wanted to do is get Trey better, he was my focus. Finally we got the phone call his billirubin levels had normalized and he could come off of the lights. I held my baby boy for 18 hours straight, I couldn’t put him down. He was finally healthy and here, and in my arms. Nothing could happen to him now. Little did I know I would fail him again, I would fail at keeping him safe, and I would fail at keeping him healthy and happy.
Trey cried non-stop. It wasn’t a normal baby cry, it was a shrill high-pitched scream, and it was constant. The only thing that would calm him was drinking formula, he refused to breastfeed. He didn’t want to be held, he didn’t want to play-he only wanted to eat or cry. And his head was growing, faster than any doctor liked. Faster than it should have, his head was so big he couldn’t roll over, he couldn’t hold his head up. At 4 months we were sent to a neurosurgeon. The first visit a CT scan was ordered. The neurosurgeon said he did have large pockets of water on his brain, but it was believed he would grow out of it. At this point I had a chunky monkey! We went for a follow-up visit 3 weeks later and his head had grown almost an inch, an MRI was ordered. This scared me. This is pretty serious, up until this point we had no idea what to expect. We loved our baby boy; he had already been through so much did he really need more tests? Tests where he had to be sedated? What were they looking for? We had no idea. We were lost, we couldn’t protect our little boy, and I failed as a mom. The MRI had shown his pockets of water were exponentially bigger and surgery was needed. What? Surgery? For what? We were told he had hydrocephalus, I did research and it scared me to death. Well what little research I could find. In my head Trey Alexander would be on feeding tubes for the rest of his life, unable to walk or talk. He would never be a “normal” child. The MRI and diagnosis came on Tuesday. We were scheduled for surgery on Wednesday May 27, 2009. Wow! That was so quick my head was spinning. What would happen to my precious angel, would he even live through surgery?
Waiting in his room with the machines, tubes, and a little hospital bed for 2 hours was horrible. I was told the surgery would last 45 minutes, so of course I though something was terribly wrong. He came into the room and what I saw was heart wrenching and horrible. My baby boy who was ONLY 6 months old was swollen, bloody, stapled, confused, and stitched. I was in no way prepared to see my son like that. I held him to calm him down and all I could think about is why did this happen? What did I do wrong to make him go through all of this? It was my fault, maybe I didn’t eat the right things or maybe I didn’t take care of him like I should have. I am a great mom, and I know that, but seeing your child in this state all you can do is blame yourself and search for answers. He was so young, and he would never lead a “normal” life. He could never play football, no karate, he may not be able to follow in his daddy’s footsteps and become a police officer, he may not be able to talk or walk, and he would always need to be followed by a neurosurgeon. What have I done to my child?

But Trey was alive, and was still my beautiful little boy. I didn’t know what the future entailed, but at that moment he was okay. He was my heart and no matter what happened in the future I would always be his mom, and I would always be there for him. When daddy saw Trey after surgery tears filled his eyes. In the 11 years I had been with him I had never seen him cry. His heart ached for Trey as much as mine did. When Ryne saw Trey 4 days later he looked past the staples and blood and squealed “Mommy Trey isn’t crying!! He is smiling! Look at him!!!” I needed that; I needed to see Trey through the eyes of a 4 year old. I needed to see that my baby is finally going to be okay.
Today Trey is 14 months old, and he is amazing!! Yes, he does have weekly physical therapy, bi-weekly occupational therapy and will begin speech therapy soon, but his growth and abilities are astounding. At 10 months he rolled over for the first time, and at 13 months he took his first step!! He can now walk 10-20 steps at a time, last week he said his first word “dada” (of course, why is it never “mama”?) He can feed himself, self soothe, he plays independently, drinks out of a sippy cup, and bring a smile to every ones face who meets him. He is simply adorable! He does have a few medical issues, but so far his shunt is working perfectly. There are times when it becomes overwhelming. Thinking about how Trey will be effected by hydrocephalus for the rest of his life, but we are taking it one day at a time and are so thankful for the wonderful, healthy, happy, vibrant child we have been blessed with.
There needs to be more information about hydrocephalus. There are so many unknowns it is an extremely scary diagnosis. Family and friends who know of Trey’s diagnosis think great, he has had a surgery, so he is fixed forever. No one knows this will affect him forever. No one knows there is no miracle cure, and Trey will forever be changed due to this diagnosis. Hydrocephalus is diagnosed as often as juvenile diabetes, but the research and funding is no where near that of juvenile diabetes. This is major. My son has had brain surgery, and will most likely have it again in his lifetime. More needs to be done, more answers need to be found.
Thanks for reading, thanks for caring, and most of all thank you for your support!!


  1. My only comment is that you didn't fail him! You're a great, protective and strong mother. Don't doubt yourself! :-)

  2. Hi. I share your pain. My son (who is now 5 and wonderfully healthy) has hydrocephalus too. We didn't know until he was 11 months old. He was labeled as colicky and they attributed his developmental delays to having a torn neck muscle at birth (torticollis). We have been through the surgeries, the therapies, and worst of all the anxiety. So much of what you wrote are things that I feel, but would never be able to express so well. I want you to know that there is lots of hope and that life can return to normal. The shunt and fear of failure won't always hang over you. My son no longer has any therapy and no one would tell him apart from any other 5 year old. He even started skiing lessons last month. So...I guess all I can say is big hugs and don't forget what a good mom you are!

  3. Tawnya, you did NOT fail him at all! You are an amazing woman and an even more amazing mom! The strength you have is incredible and awe-inspiring. Trey is so lucky to have such a wonderful mom. This was beautifully written and made me cry!

  4. It's interesting how I would stumble upon a post like this. You said to leave feedback so here it is...

    I read through everything and I can relate to those feelings you have about being a failure. I lost my first baby at 20 weeks, I made the decision to terminate the pregnancy because of not only the hydrocephalus- which was much worse than your baby, but also a severe case of spina bifida. I was young and had no clue of those things. The nurse told me she was a girl and that they don't know if the baby would survive after birth. I had a level II ultrasound and an amniocentesis after the high afp levels. I tried to hold on to that pregnancy as much as I could but in the end I think I made the best decision for my baby. I was basically told that she would be a vegetable. I know there are miracles every day but in my heart I felt that this baby had no chance. I felt like I did something wrong, I felt like such a failure. At times I still suffer in silence but only in brief moments. The second time around, I still had high afp levels but all the other tests came back normal. I gave birth to a healthy baby boy on August 2008, the best moment of my life so far. And yes, I would do it again.

    Reading your post reminds me that giving birth is a miracle. Even though you may feel like a failure you have an energetic happy boy that loves you so much. And with all the therapy he is getting now it will make a huge difference in the future.