The beginning.
"Your little boy is really sick right now…We have to take it hour by hour.” The Doctor said. He continued, “Although this condition is not rare, it is not common, and babies die from complications like this and there is no guarantee that there will be a happy end here." …Hours earlier I had an emergency c-section due to the fact there was no blood being pumped from the baby’s heart.
Carter Reed Churchill was born 4 weeks early with undeveloped lungs, low blood sugars, an enlarged heart, enlarged liver, three brain bleeds, circulation problems and critically low blood pressure. He was hooked up to a web of cords, tubing, masks, and leads with each having its own critical job to perform. Over the coming weeks there would be numerous medical tests, EEG, EKG, MRI and X-Rays. I remember it was the first X-Ray that we discovered his heart was the size of his lungs and his liver was the size of his stomach. I also remember the overwhelming need to hear him cry. Due to his inability to breathe, a tube was placed in his throat which had to go through his vocal cord...how easily we can take the simple things like wanting to hear your baby cry for granted...
As a parent it is extremely difficult watching your child suffer thru anything, most times we can kiss the boo boos and make it all better, in our case we knew that would never work. A feeling of helplessness consumed us as we watched our baby Carter lie in the NICU day after day, week after week.
It’s interesting how quickly you gain new perspective on life when you are faced with such a horrific set of circumstances. The words… “babies die from complications like this” will forever be with me….and not to haunt me but to remind me of where we once were. As eventually, the catheter was removed, the breathing tube was taken away, the sugar regulated, the blood pressure stabilized, and the leads lifted from his chest …we were finally able to take our baby home…we were finally able to go enjoy life and do what all families do. We thought that the worse was behind us, however...
On May 16, at 3 months old, Carter was diagnosed with a profound hearing loss…to put that into context, his hearing level was equivalent to that of a jet engine. To say we were shocked would be an understatement. We were never given any indication that there may be an issue, however, looking back on it, it could explain why he cried every day…which by the way, I did try really hard, to remind myself how grateful I was to hear it.
We were told we had a choice...to have Cochlear Implant (CI) surgery and learn speech or do nothing and communicate with Sign Language.
I think it was at that very moment I realized for the first time that our decision as Parents will have a direct and lifelong impact on our child...it was an enormous decision that weighed very heavy upon us. Ultimately, after much research and discussions, we opted for CI surgery.
At 11 months old, after suspecting that Carter was not developing his motor skills as his older brother Hunter had, we were told that Carter likely has cerebral palsy (CP). They said likely because there isn’t a procedure available that you can test for CP... it’s basically a diagnosis that comes about after several other possibilities are ruled out and CP is most likely, based on signs and symptoms. That was hard to accept, as we would have preferred a much more definitive diagnosis.
Carter Reed Churchill was born 4 weeks early with undeveloped lungs, low blood sugars, an enlarged heart, enlarged liver, three brain bleeds, circulation problems and critically low blood pressure. He was hooked up to a web of cords, tubing, masks, and leads with each having its own critical job to perform. Over the coming weeks there would be numerous medical tests, EEG, EKG, MRI and X-Rays. I remember it was the first X-Ray that we discovered his heart was the size of his lungs and his liver was the size of his stomach. I also remember the overwhelming need to hear him cry. Due to his inability to breathe, a tube was placed in his throat which had to go through his vocal cord...how easily we can take the simple things like wanting to hear your baby cry for granted...
As a parent it is extremely difficult watching your child suffer thru anything, most times we can kiss the boo boos and make it all better, in our case we knew that would never work. A feeling of helplessness consumed us as we watched our baby Carter lie in the NICU day after day, week after week.
It’s interesting how quickly you gain new perspective on life when you are faced with such a horrific set of circumstances. The words… “babies die from complications like this” will forever be with me….and not to haunt me but to remind me of where we once were. As eventually, the catheter was removed, the breathing tube was taken away, the sugar regulated, the blood pressure stabilized, and the leads lifted from his chest …we were finally able to take our baby home…we were finally able to go enjoy life and do what all families do. We thought that the worse was behind us, however...
On May 16, at 3 months old, Carter was diagnosed with a profound hearing loss…to put that into context, his hearing level was equivalent to that of a jet engine. To say we were shocked would be an understatement. We were never given any indication that there may be an issue, however, looking back on it, it could explain why he cried every day…which by the way, I did try really hard, to remind myself how grateful I was to hear it.
We were told we had a choice...to have Cochlear Implant (CI) surgery and learn speech or do nothing and communicate with Sign Language.
I think it was at that very moment I realized for the first time that our decision as Parents will have a direct and lifelong impact on our child...it was an enormous decision that weighed very heavy upon us. Ultimately, after much research and discussions, we opted for CI surgery.
At 11 months old, after suspecting that Carter was not developing his motor skills as his older brother Hunter had, we were told that Carter likely has cerebral palsy (CP). They said likely because there isn’t a procedure available that you can test for CP... it’s basically a diagnosis that comes about after several other possibilities are ruled out and CP is most likely, based on signs and symptoms. That was hard to accept, as we would have preferred a much more definitive diagnosis.