Thursday, June 9, 2011

Time Flies

I have been planning for Cole's Yard Sale for about 10 months now. I cannot believe how fast time has flown! It is next week and I am so excited!! I cannot wait to see the turn out and hopefully raise enough money to make a difference in some other families lives. I really hope that this is worth it. It has been a huge process, but I am so grateful to have taken on such a great project. I cannot think of a better way to spend one's time, than in giving back to others.

I was telling Cole's story to some people today, and almost broke down crying. It has been about 2 1/2 years and it still feels like yesterday he passed away. I can still play every event in my mind. Going to the hospital, having a gut feeling that something was wrong and he needed to be delivered. Having his heart rate low. When he was born, he looked absolutely beautiful. A perfect angel. His cute little feet were clubbed, but other than that, he looked just perfect. He didn't open his eyes, but he was also 4 weeks early, so the nurses said it was typical. It was late at night and I was so tired. I remember thinking, "When are they going to get me to my room and put him in the nursery?" I felt like I could barely hold him with my arms.

When they didn't bring him into feed that night I was worried. I called down to the nursery and he had been placed in the NICU. His oxygen levels had been low, so they wanted to monitor him. When I first went to see him, I was expecting him to only be in the NICU for a couple of weeks. I was so anxious to have him home, the thought of having him up there for 4 whole weeks was unimaginable. Now, that seems a bit easier. He was so beautiful sleeping. We were advised not to stroke him a lot or hold him, since he was a premie and too much contact could be bothersome. I remember just staring at him. In my mind I was picturing him with two little blue cast on his cute little legs. He was in the process of being approved for surgery through Shriners Hospital. My biggest worries at that time was getting him home, and getting him through surgery when he was a little bit bigger.

I went home the next day, with plans and arrangements to come and see him and deliver his milk. It was strange not having him home, but many parents have had to go through this process, so I was prepared to take on the challenge. The next morning we were eating breakfast, and we received a call from the NICU. They said that we need to come up and speak to them. Cole had a small seizure at night and they wanted to talk to us. At first I didn't know what to think. How bad is that? Is it normal? It seemed like a million years had gone by, by the time we had dropped Drew off at his cousins and reached the hospital. Cole's Dr. was amazing. He informed us that this sometimes happens with premie's and they were going to do more testing. He had his brain imaged and they found some scarring. There was grey matter where it should have been black or white. The Dr. said that it could be anything from learning to crawl late to cerebral palely. Cole just laid there perfectly. Besides his cute little feet being clubbed, absolutely nothing looked wrong with him. We were sent out to wait while they checked his heart and did other tests. His Dr. said that he treated every patient like his own. If he felt like for any reason they could not treat Cole fully here, he would immediately send him to Primary's. It was so comforting to have a Dr. who truly cared for your child.

Nick was in during the ultra sound of Cole's heart. He asked the technician if he could see anything, or something like that. He replied yes, but that the Dr. would have to speak to him about it. After that test, Cole's Dr. came and said that they were transporting him to Primary Children's. There was a blockage by his heart. That struck a chord in me. This was not good. Primary was one of the top hospitals in the country for children. They treated anything and everything, and here my baby was going to have to join them because something was wrong. Life Flight was called in by ambulance to take him up to Primary's. As they were transferring his tubing and cords, one of the nurses asked if I had the chance to hold him. I told her no, just when he was delivered and she put him in my arms and continued to get things ready to go. They also had a camera and were taking pictures of us. A sickening feeling entered me, and I knew this was not going to be good. They buckled him in his little seatbelt in the incubator and we were headed up to Primary's.

The head Dr. came and spoke to us after he finished assessing Cole. He was taken off guard by the results at St. Marks and was going to re-run the tests. In my mind I was thinking, "Yes, they made a mistake. Let's go home." We waited what seemed like hours, and then they finally came and called us into a room. I swear there had to have been six dr.'s in there with us. I felt like I was meeting with the medical board.

We then learned that our perfect little angel was struggling. Cole had developed a clot in the aortic arch of his heart, while in utero. They couldn't tell whether it was a blood clot or a tumor. It had however, been blocking the blood flow to his brain for quite some time. The left side of his brain and body had not been getting adequate blood supply for quite sometime. His brain had however, developed an alternate route to supply some blood flow. The damage to his brain was extensive. There were no options for surgery.

When babies are born, they have a type of whole in their heart. As the first few days pass, that whole naturally closes up on it's own, and they continue to develop and grow. Cole's was only surviving on that little whole through his heart. His little body was working twice as hard to pump enough blood throughout his body. When the dr.'s discover this, they were able to put him on some medication to keep the hole open and help with his blood flow. The thought of my son, lying there, struggling just to pump his blood for the past 3 1/3 days, broke my heart. What a strong guy he was. We had to make the decision of when were going to take him off like support. His life literally was in our hands. It is such an intense and emotional feeling to have to decide your child's death date.

With arrangements made, family and friends started to come and say good bye to our sweet baby Cole. We were placed in a separate area so that we could have some privacy. The NICU has pretty strict rules when it comes to their little angels. And they rightfully do so. Those sweet babies and working so hard to exist and they need to make sure that absolutely nothing interfere's with their progression. We used to joke that it was like going into lockdown when entering the NICU. You wash you hands for what seems like 10 minutes, then use hand sanitizer, and possibly in the future a full body scan. Well, when your son is dying, no germs can make it worse. We weren't monitored for germs and colds. And suddenly the rule of no touching and holding was thrown out the window. He was being held almost 24/7 whether by a friend, family member,or nurse. Immediately the feeling was hold him now, for tomorrow he will be gone.

Cole returned to his Father in Heaven on Monday, November 11, 2008. He died in our arms surrounded by family. I started to get nervous as he slowly started to pass away. I watched his every breath. He opened his eyes. He looked at me and then closed them. It was my first and last time that I had seen his beautiful blue eyes. Moments later he took his last breath. I felt his presence exit the room. After he died it felt cold. His little body was still, too still.

It was a huge test of our faith having Cole die. I prayed the night before we were to take him off life support. I prayed for peace and comfort and the courage to be strong. I received the warmest feeling and reassurance that Cole's plan was to return to his Heavenly Father. He was so special, so perfect, so pure. I miss him everyday. I think about how our family would be different to have 3 little boys running around. But I know without a doubt, that I will see my sweet baby Cole again. I will hold him in my arms again and be able to see him grow up.

I love you Cole! This yard sale is in your honor. To help those who are facing harder trials than we can even imagine.
"The Lord takes many away, even in infancy, that they may escape the envy of man, and the sorrows and evils of this present world; they were too pure, too lovely, to live on earth; therefore, if rightly considered, instead of mourning we have reason to rejoice as they are delivered from evil. and we shall soon have them again."

5 comments:

Evans Family said...

Nick and Jan, I too miss Cole being part of our lives here on earth. But I feel that he has touched and will continue to touch so many lives from heaven. Love you guys.
Mariette

Sam and Josh said...

That is such a sweet story and you are such a sweet, beautiful mom. I am so happy I could donate to your cause and I know it will be a great success. Thanks for your touching story and for being such inspiring friends.

Miki said...

Tears. Thank you for sharing this story. You guys are so incredibly strong. I still remember the letter Nick read to Cole at his funeral, how he started it with, "Hey Buddy." The Spirit was so strong! He is so lucky to be a part of your family and I'm sure you feel the same way. Best of luck with the yard sale...we'll be there!

Brandi said...

Wow, your story breaks my heart and inspires me all at once. You are amazing and Cole must be an amazing little boy! Thanks for sharing. The yard sale was a fantastic idea!

Zane, Fallon,Taden,Damian and ? said...

Janessa,
I'm so glad you shared Cole's story with us. I will never forget that sweet little guy! what a special mom you are. You truly inspire us all. Miss you guys like crazy and good luck with the sale!