Two years ago…

Two years ago today my entire world changed. David Cruze Collins decided to join us on July 6th, 2012 although at the time he still didn’t have a name. The day before we partially decided on naming him Hyatt. Yes, like the hotel. Cruze was a name that my mom said she wasn’t fond of so I threw it into the “not gonna name my child that, my mom is always right pile”. I believe I have told the birth story of Cruze on my blog 2 years ago so I won’t bore you with the literally “pain in the ass” story. I WILL tell you the story that many of you don’t know.

Cruze was born 11 days early, in normal pregnancies that isn’t considered harmful or premature. My whole pregnancy was difficult. I was constantly in the ER with miscarriage symptoms and really didn’t think it would last. I will never forget thinking it was the end and one of my best friends did the unthinkable to help me… but its a little gory for telling. ‘I WILL say Nicole Lybrand deserves an award:) After we made it past the 4th month and got past the scariest part or so we thought, we began having other problems. The ultrasounds were showing that Cruze long bones in his arms and legs were measuring short. Short enough to cause concern so they sent us to a specialist at MUSC. We were new soon to be parents and I really didn’t think anything of this. At this appointment we did an ultrasound and afterward the doctor came in with 3 other doctors with a somber look on their faces. They told my husband and I that Cruze would most definitely be born with Dwarfism. Maybe it was out of sadness or pure anger but Hank stood up and started screaming at them. How dare you tell us this when you are 100 percent sure? Liability issue? You are telling us this so we won’t sue you, aren’t you? They asked us if we wanted to talk to a genetic counselor and we refused. Does this change how we feel about our baby? Absolutely not! We were in the midst of moving overseas and the weight on our shoulders was unbearable. This really wasn’t something you tell people especially when you were unsure yourself. All I could think was the challenges this baby would face, how could I make his world easier, how would I arrange the house when he was older? Once we got to Hungary we told our doctor the “diagnosis”. He did an ultrasound and we prepared to hear the news once again. “How tall are you Taylor?” asked the Doc. “Im 5’4.” The doc said, “Well I have no idea what that means since we measure in cm but all I will say is your baby isn’t a dwarf, he’s just little like you.”

Do you know the relief that flooded over us? He continued with telling us that American doctors are held under such strict law that they go with the worst possible outcome and when its better, at least you won’t have sued them.

Cruze came out at 5.5 lbs and around 19 inches long. He was most definitely a small baby. Afterward I had to go into surgery for a D&C to remove my placenta, as it had adhered itself to my insides. I barely held my baby for a minute before I was whisked away. I’ll never forget the terrified look on my husbands face. I remember being quite scared that I wouldn’t wake up. I came out just fine, although I was on the becoming anemic and needed some iron transfusions.My doctor came in and told us that my placenta was in horrible shape. Basically it had pretty much stopped giving any nutrients to the baby and thats probably why he came early. What I remember afterward was very hazy but I remember finally getting up to go see Cruze in the nursery. I was really the first time Id seen him to me since in the delivery room was a blur. He was in a plastic incubator all hooked up. (At the time I thought this was a normal thing for babies) I remember not being able to take him out right away.We walked back to the room and Hank asked what I wanted to name him. I just said “Cruze”. He said okay. For 30 minutes I couldn’t believe he just let me make that decision, and he kept saying Yes Taylor! Yes! His name would be David Cruze and he would go by his middle name. I lost that battle but I guess we both got what we wanted. (Im happy to report my Mother loves the name as well..)

Later on the staff let us know that Cruze had Jaundice and his billirubin count was too high and he needed to be under the blue light. Eventually it became so high that he was to stay in phototherapy unless he was nursing. It was so sad to see my tiny nugget in a box that looked like a baby tanning bed. Again, I assumed it was only for a while. He also had a few ultrasounds on his head and stomach during our stay which was not something that was typical. We were in the hospital 7 days. The longest 7 days ever…

We were home one day before we had to bring him in to the doctor again. (Mind you that the hospital was two hours away). They did a blood test to check his levels and told us they would let us know what his count was. Ill never forget this day, it was my birthday. The pediatrician sat us down in her small office and said, ” You’re baby is beautiful BUT, I believe he has Downs syndrome.”

You can’t imagine what this feels like. I have this perfect little creature in my arms and you are telling me that he’s not a dwarf but he may have Downs? She told us that his eyes were almond shaped, his head was large, and she thinks he has the Palmers crease. (which is a downs trait). We waited two full weeks for these results to come back. For two weeks, which by the way was the longest part of my life, we lived with knowing that our child would have a difficult road ahead of him. We became parents of a child with a disability. We started thinking in this way. I emailed a support group blog on parents with children with Down’s. I researched everything to prepare myself. I skyped my Mom one day and she says, ” Taylor, I just don’t see it. I think he is normal as can be and I don’t believe it.” I wanted so badly for her to be right, I even agreed. Yes he’s got a big head and funny eyes but I just don’t see it. I mean, all babies are weird looking! The two hour drive back to Budapest was quiet, neither of us were prepared for the news. She sat us back in the very same room and said, “Its negative, he doesn’t have Down’s. He does however have dysmorphic features.” For me there was relief but to hear a doctor say that my kid looked weird or unlike other babies was heart breaking. Haven’t we been through enough?( Later on we found out that the entire staff at the hospital where he was born thought he might have downs but never told us, which was the reason for all the sonograms I think.)

The road ahead of us was far from over. His billirubin count had skyrocketed and he needed to be in phototherapy once again and we needed to go to the public hospital ASAP. I can’t tell you how awful this hospital was. Ants crawling on the ground, no air conditioning, sick babies and their mothers all in one room, no toilet paper, blood on the toilet seat, and one chair to sit in while Cruze was baking under the lights. That night was even harder as in this hospital, I wasn’t allowed to stay overnight with him. I had to give him formula and diapers to the nurses and leave my tiny precious baby all alone in a place that even we were scared to be. Out of all the things that had been happening this was the worst. We got a hotel and tried to sleep. We woke up early and rushed back across town. His levels weren’t moving down, in fact they were getting higher.  The doctor spoke broken English and after calling our peds doc, she translated this. We called our International Health providers and told them to help us, we were scared Cruze wasn’t getting what he needed. Later that day an ambulance was sent from Vienna, Austria to Budapest to transfer him to a better more suitable hospital. Hank rode with him in the ambulance, I couldn’t function seeing him in this state. I drove behind crying the whole way there for two hours. You have to remember we had no family, only few friends near and felt completely out of our minds. We ended up staying in the Vienna hospital about a week. This hospital was a far cry from where we had been. There was a small twin bed that Hank and I slept in until finally we had enough and Boeing helped us get him a hotel room so we could both sleep. Endless horrible hospital food, some of it was horse meat. The only channel was CNN so every time I hear a commercial for the show Amanpour, I die a little inside. They pricked him 3-6 times daily in any vein they could find. His count went so high that he had to be sent to the NICU overnight. Eventually his levels came down again and he came back to the room. A friend came and got me, she took me into the city to get me out of the hospital. We got Starbucks which was heaven but the guilt I felt for leaving Cruze wasn’t worth it. (Hank was with him, he wasn’t alone) Finally his levels went to around normal and they told us we could go home but he needed to be check every week.  During all this, we traveled 4 hours total each week sometimes twice just for them to stick his arm. We had to go back to the dreadful public hospital in Budapest. They let us know that his levels were too high and his blood count was too low and they worried he may have some sort of blood disease. They were thinking they needed to start checking his bone marrow as well. Noone knew what was wrong with him, but finally they suggested a blood transfusion. He had a blood transfusion that day and it took hours. We sat in this tiny room with only one beat up old chair and took turns taking walks outside. Seeing that baby strapped to a wire that was pumping someones donated blood into my kid was  so painful. We felt helpless. Continuously helpless. During this time we were pushing to get an emergency passport for him to get him to the States. We barely had a birth certificate since our original marriage license got left behind in the States. After everything was said and done, he had two blood transfusions within a month. We feared the worst, that he wasn’t a dwarf, he didn’t have downs, but he had a blood disease that would kill him. I never said the words out loud until probably about a year later and still to this day its hard to say, I really didn’t know if he would survive. He was so sick. He was also a damn good fighter. He fought and he became stronger and stronger until one day when my brother was visiting, we took him to his weekly blood test. Logan held him in his arms for me. You had to hold them down while they took blood and it was nice to have Logan do it so I could cry in the corner. I can’t forget seeing my brother try to be strong for me when I know he was scared too. By this time we had been sent to a public hospital on the opposite side of town to a blood specialist. She kept a weekly check on him and yet still, it was unexplainable as to what was causing Cruze to have such a low blood count. But this particular day, was the best day. The doctor informed us that Cruze’s levels were as normal as could be. No explantation, no understanding of why but she said he was totally and completely normal! I ran out to Logan and told him, we couldn’t believe that he never had to go back to this hell again. For weeks I watched him like a hawk. Is he sleeping too much? Is he looking yellow? Is he alert? Is he eating? All the things we were told to watch… he was officially a healthy baby! It wasn’t until December that we got more news saying that his head was just not shaping correctly and we would need to go to Vienna for a helmet to shape is baby head. Helmet? Ha! No problem! Although this was another set back and more traveling every week it wasn’t life threatening and could be fixed. Each week he was measure and his little helmet was resized to reshape the flat spot on his head. I hated that helmet, it was just another thing that felt like we had to go through or rather him… But now I look back and see how adorable he was in that helmet. Just as happy as a baby can be.

We still don’t know why he had issues with his blood or severe jaundice. I believe there is still a fear in us both that wonders if it would reappear unwarranted. We keep saying he now has strong Hungarian blood and is tougher than nails! Today on his 2nd birthday, he fell on his new car and scratched his leg and it began to bleed. I of course was ready for the medical kit to be used but Cruze said “ouch!”, blew on it, got up and limped back over to his toys and started playing. He is strong and brave like his Daddy…

So here today I share the story as to why Cruze’s birthday is not only a celebration of his birth but another year we are so thankful that through everything he is still with us today. Healthy, smart, and the best kid I know. Looking back I realized that we walked through hell and back as new parents. I feel like we are all a stronger family and I have to say we are lucky. We came out of everything just fine. Not all parents are as lucky and I thank God everyday for Cruze and my husband. Its still hard to look at some of the early pictures, but it reminds us how far we’ve come and how much he’s grown…

Happy Birthday to the most amazing kid around!

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