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!!

Thursday, February 4, 2010


I almost forgot to share... Trey Speaks!!!!! At 13.5 months Trey Alexander said his FIRST word!!! Well he said da da da da da da da..... But I count that as a word :) I'll take what I can get :) He will still need to begin his speech therapy-Yay another therapist :( BUT it means he is finally getting this stuff :)
Did I forget to write earlier he took his first steps last week!?!?!? He can now take about 15 steps and who cares if he looks like Frankenstein while walking.... It is so cute and he is totally proud of himself. I need to get new DVD's for the video camera so I can catch this for you :)
I am so proud of our Trey Trey-he is such an amazing baby!! He also has 3 teethe starting to break through and just had 3 completely break through-and you would never know he was teething, except for the BUCKETS of drool. he has not been cranky at all, he is still sleeping 13 hours a night and keeping up with his 4-5 hours of daytime naps-YAY for sleep!!!!! My kids are awesome, whether I am a crazy mom or not ;)

Why are my kids so emotional??

I don't know if I have done something wrong-likely- or they were born this way, but my sons can cry at the drop of a hat!! If Ryne cries then Trey is VERY quick to follow, heck if anyone cries Trey starts hysterically crying. I mean can't breathe, tears flying, burying his head in my chest, screaming crying. Weird!?!? If you look at Ryne and start to talk to him and he doesn't want to talk or is embarrassed he starts whining and crying. Seriously WHAT am I doing wrong???
Stephan and I decided in Ryne's best interest to pull him out of his private 4 year old "pre-school" and put him in state pre-k. His 4 year old class was 3.5 hours and pre-k is 7.5, this is a HUGE transition for Ryne, but we figured we would start the transition now rather than wait 'til he was in kindergarten (which is 7.5 hours also.) I mean he is going to have a lot of changes when he begins kindergarten, so the class length difference and larger classes can be tackled now. So far he is doing really well, he actually comes home with "homework" (which is actually something he makes up and does on his own to show his teachers-he really loves schoolwork :), I asked them if I had missed the assignment and they said no, he gave himself homework-he is so cute!!) But the LONG days are taking its toll on him. I know he just needs to get used to it, I just feel really bad. Not to mention they provide breakfast and lunch and since Ryne refuses to eat ANYTHING he is starving when he gets home, to the point he is sick. Talk about feeling like the worst mother EVER!! He just needs to eat more foods, and I am hoping this will make him try more stuff, in the mean time I will just worry myself to death that my son is going to waste away, and cry myself to sleep for being a really bad mom.
Sooooo... when we switched his schools we switched his Karate class, so it was closer. Well his new one is much more intense and disciplined. He was really lost in his first class and just started crying, had to leave the class. I felt really bad for him, but then Trey started to cry and I felt really bad for me. Why are they so emotional??? I Just don't get it...