For ten years my husband and I waited, hoped, and prayed for a baby. I had finally started going to the doctor when she told me that I had something called: "Hyperplasia". After about two years of going the doctor and taking medicine I found out I was pregnant. We were really excited. About six weeks later (November 24th, 2009. Two days before Thanksgiving) I miscarried. A month later I went back to the doctor where she told us that it would probably be better to start trying again right away. I was about to give up when in February of 2010 I found out that I was pregnant again. This time there was only a couple people that we told. We were so excited, but at the same time very nervous. We were hoping that our dreams were finally coming true.
When I was six weeks along, I had an ultrasound. That was the first time we saw the babies heartbeat. That was the most amazing thing.
At eighteen weeks I went in for another ultrasound to find out what we were having. When the nurse told us we were having a boy, you should have seen my husbands face. It lit up like a light bulb. I knew that he was hoping for a boy. I didn't care either way, I was just happy to be having a baby. Of course after leaving the doctors office we started calling everyone to let them know. But our excitement soon wore off when we got a call from the Dr. saying that there was a concern on the ultrasound. She said that there was a little extra fluid on his brain. I had no idea what that meant. Like any parent we became concerned. I immediately started googling "water on the brain" and every time, the name hydrocephalus popped up.
We were sent to Grand Rapids to a specialist where they did an ultrasound and confirmed that he had hydrocephalus. It's hard to sit there and listen to a Doctor tell you that you probably won't be able to take your child to the park to play like normal kids. And that he may never walk or be able to hear and see you. There's no way of describing how we felt. All I can say is that it was not a good feeling.
They wanted me to have an amnio done and the only reason I agreed to do it is to see if they could figure out why this happened.
The next few months should have been fun and exciting, picking out the crib, buying the carseat and getting clothes, but I had a hard time being excited. Because we weren't sure if our baby was even going to make it. All we could do was hope and pray.
On October 3rd, 2010 at 8:18 a.m. we welcomed our baby boy Colton Jaymes into this world. He was born six weeks early. I got to see him for a minute and give him a kiss before they took him down to the NICU.
The day after he was born they placed a shunt in to drain the fluid. We thought everything was fine and he was getting better,but two weeks later one of the doctors from the NICU called and wanted to see us. He told me that Colton had a heart condition (an interrupted aortic arch). He said that Colton didn't have much chance of surviving without surgery. My husband wasn't there yet so I went into the waiting room and waited for him to get there. After we got back to the nursery the doctor had come in to explain things again to us. We were once again heartbroken.
They contacted Motts children hospital in Ann Arbor where we were scheduled to go but on the day that we were suppose to leave they had to make the change to send him to the childrens hospital in Detroit. After being there for two days and an evaluation, they thought it would not be in his best interest to do the surgery. So we headed back to Devos.
About a week later we set up a family meeting with some of the doctors and family. We all had to sit there and listen to them tell us that there was no chance of our baby surviving. We walked out of the conference room that day with broken hearts. Nobody should ever have to hear those words. We had no idea what to do or what was going to happen to the baby we had waited so long to have.
Colton had been on and off the ventilator and cpap since birth. He was getting stronger and even pulling on his vent tube. We took that as a good sign. Two or three weeks later the Doctor wanted to set up another meeting. So the friday before Thanksgiving we went into the conference room not knowing what to expect. We talked about what to do. While in the meeting the subject was brought up about getting a second opinion. The doctor said they would support any decision that we made. So after talking about it and asking some of the family what they thought, we decided to get one. We waited for two long weeks before they came into the nursery and said that they heard back from U of M. They agreed to do the surgery if that's what we wanted. We immediately started calling the family to tell them the news.
On December 10th we headed to Ann Arbor. We were nervous as any parent would be. On December 13th around 7:30 am they took Colton back for his open heart surgery. Thirteen hours (five of that thirteen he was in surgery) never seemed so long as it did that day. When the doctor came out and told us that he was done and the surgery went well, we rejoiced and thanked God for helping him come through it. We are very thankful for all the support we had. Lots of family and our pastor was there with us. Colton spent his first Christmas at U of M. But after everything he had been through that didn't seem to matter. The Monday after
Christmas Colton was transferred back to Devos.On January 11th Colton had surgery to get his feeding tube put in. We were told that he could possibly go home two weeks later, but of course it didn't happen like that. One of his incision sites was leaking so they had to externalize his shunt for three weeks to give all the incisions time to heal. It was just our luck that after his shunt got internalized they would find two subderal bleeds and have to get a couple of drains put in. They were externalized for maybe two weeks and the doctor decided to inernalize those too. Then the week Colton was suppose to go home he ended up with a little skin irritation which they thought was an infection at first. Thank God it wasn't. They treated it with antibiotics and
it went away.
On March 28th Colton was finally able to go home for the first time. We were so excited, but he had surgery scheduled for the next Friday. He came through that hospitalization and was home with us again for a short time. He ended back in the hospital a few days later and was in there over Easter.
Colton had been back to the hosptial many times since then, but I did get to spend Mothers day at home with him. He was back in for Memorial Day, Fathers Day, The Fourth of July, and Labor Day. They did finally get the infection cleared though and he was home on his birthday.
We were planning a big birthday party for him. It was going to be a western theme, but two days before his party he was back in the hospital. This time he wouldn't be coming back home. He was taken by ambulence to the hospital where they intubated him and then was flown to Devos. His shunt had quit working and he wasn't getting enough oxygen to his brain. It was so hard to see him like that. Especially when I was use to getting woke up by his babbling and finding him in his crib playing with his feet or toys. Or seeing that big smile on his face.The doctors kept telling us that he would never wake up. Two weeks later we made the desicion to take him off the vent and let him go peacefully. On October 20th we all gathered in Coltons room. There was somewhere between fifteen and twenty loved ones in the room with us. We kissed and held him tight as we said goodbye.
There were times throughout the year that I had asked God why he would let this happen to us. Why He would put us through this much pain. But then I had to remind myself that if Colton had not been given to us then he may not have been born at all or may not have been loved as much as we all loved him.
Colton left a big impact in everyones life. Even those that had never met him. He will be in our hearts forever. He is in a much better place with no more pain. We are so thankful for God allowing us to have a year with him. We would not trade it for anything. We are also thankful for all of the family and friends who was with us throughout the year and for the all the doctors and nurses who took care of him.
Forever in our hearts!
Colton Jaymes
October 3, 2010 - October 20, 2011
Crying...wow, I struggle to find words, I wish I could wrap you in a hug and cry with and for you. My heart still aches at your loss and the challenges and pains of the past year for you guys.
ReplyDeleteI just LOVED looking at those pictures again, seeing that sweet face that always made me smile. He was a beautiful blessed little boy (and a blessing).