I'm honored to share with you all another guest post, this one is written by Brigette from A Blessed Life. Thanks so much for sharing your story with us and your sweet little Kael!
Mom to Kael
April 12th, 2008-October 4th, 2008
When we found out we were pregnant with our 3rd baby we were so excited. The pregnancy was a rough one and I could tell something wasn't quite right. This baby didn't move around nearly as much as my previous 2. We went in for our ultrasound at 19 weeks to check on the baby and to find out the gender. The tech told us we were having another little boy and that all looked well and that my doctor would be in touch.
At my next ob appointment the doctor told me they had found some concerns in the ultrasound and they wanted me to see a perinatologist to look over the baby. I was scared out of my mind and called to set up the appointment right away. We had to have many ultrasounds and they swapped back and forth with gender 3 times before they finally decided to do an amnioscentesis to find out gender and check for abnormalities. They could tell that the babies limbs were not forming properly and the lengths didnt match up quite right. After all their tests the confirmed in deed we were having a boy and that the major things they can test for all came back normal they were stumped and said we would have to wait for the baby to arrive to see what we were facing.
On April 12th, 6 weeks early, I went into labor. It was fast and very scary. When that baby was born I only got to hold him for a few short minutes and then they whisked him away. He was sort of blue and not breathing well. My husband followed them to the NICU to get more information. Later on he told me that they had actually had to bring Kael back alive with breathing support.
The doctors were still stumped. Kael couldn't breath well on his own but his heart looked good and his body had all formed well except for his wrists. They brought in pediatric neurospecilaists from the main hospital and watched him and watched him and did many many tests.
He would start doing well and then quickly decline again in his growth and improvement. After 6 weeks at the hospital he was born in, they decided to transport him to the pediatric hospital Primary Childrens for further testing, mri's etc to see if they could figure Kael out. They kept coming to us with possible disorders, they would test for them, and they all came back normal or inconclusive. It was so frustrating watching our sweet boy go through so much trauma and to get no results. They did muscle biopsises and ended up putting in a g-tube for Kaels feedings as swallowing formula was causing him pneumonia and determined it was a neuromuscular condition and that they weren't sure how long of a life Kael would live.
After 10 weeks at primary childrens Kael was released home for the first time. July 24th, 2008. We had him home for 1 night and had to promptly return to the hospital as Kael was unable to keep his stats up with oxygen and feeds. They found out he again had pneumonia and we spent another week at the hospital.
Kael then came home for about a week and was doing well with feeds and physical therapy but got the flu and had to go back to the hospital yet again. He was there for 2 more weeks when we got to bring him home for the final time. We got to spend 10 precious days at home with him. We got his pictures professionally done, got him blessed in our church and took him to a football game with our family to watch our favorite college team. We got pictures of him with the family and the players and our team won!!
We got home very late that night and laid Kael down for bed around midnight. I had to take my mom to the hospital the next morning and when I got there, I received a horrible phone call. My husband had woken up to give Kael his morning meds and feed and he was gone. Sometime between midnight and 6 am Kael drifted off to sleep never to wake again.
He hadn't cried or fussed or stirred. We were in utter shock. His body had worked so hard for so long that he finally had to give up the fight.
I was in shock I couldn't believe it. I raced home and held my baby, cold and limp. My husband held me and we waited for the mortuary to pick up his sweet little body. Handing him off to this complete stranger was so not fair.
My hubby and I set out to Bountiful to set up his services and pick out his casket. I was in disbelief. Who has to pick out a casket so small for their sweet little boy?? This isn't happening, this isn't fair.
We got the services all arranged and set the date for his funeral. The day before, we went out one last time to hold our sweet boy and dress him in his final resting outfit. Oh how hard it was. It was all I could do to put his little socks on. My husband was so brave and finished getting him dressed. He held him and cried kissed his sweet lips and laid him there for the services in the morning.
The next day we had his services and then left him in the cemetery for his final resting bed. What a nightmare, it couldn't be true. We go there often to visit and often speak his name to keep his memory alive. Oh how much is is loved and missed!! Our sweet baby boy Kael. Forever in our hearts We love and miss him dearly.