I know, I know. I left you all hangin'
Carter's feeling MUCH better now. He started acting more like himself on Saturday, and just keeps getting better and better. He has been sleeping a lot, but that's not surprising since he went through a whole week of sleeping about an hour a night.
We had Occupational Therapy today, and Carter did so well! He's certainly lost a lot of strength from being sick, BUT his airway sounds SO good.... I hope I'm not jinxing anything, but I think we *might* have finally found the right combo of drugs to keep his acid reflux at bay. Today was the very first time that Carter has been able to make it through 45 minutes of therapy without any breaks due to heavy breathing or whistling in his throat. We're just going to keep on praying that he keeps it up.
He's got a somewhat busy week this week. He has two more therapies tomorrow, a blood draw on Wednesday, and a follow up appointment with his pediatrician on Thursday.
We got an exciting thing in the mail today. I posted awhile back that I was asked to write a quarterly article for Michael's work newsletter, well, my first issue arrived in the mail today. I think it turned out pretty cute...the bear they put on there is so cute!
Here's the article:
Did he just smile at me? There is no way that he just smiled at me. After all of the trauma that he had been through, there was absolutely no way that he could be smiling at me….but there it was again. Was it a smile? My thoughts drifted back to the minutes after he was born. The doctor looking at me over the top of his glasses. The way he told me that he was sorry, but our baby had a cleft lip. His nervous voice as he told the nurses to get the NICU in there. The distraught look on my husband’s face as he told me that our baby, our son, was missing an ear. The sounds of the nurses pushing on his chest and telling him to breathe. I nervously waited for at least one little whimper. It was a whimper that never came. I could only take a glimpse of him before he was whisked out of the room. How had all of this happened? Why was our baby born like this? We didn’t deserve this…he didn’t deserve this.
In those moments I wasn’t sure if I was strong enough to do this. I wasn’t sure if he was strong enough to make it through. Life had taken us all by surprise and left uncertainty in its wake, but we were here now and I think that he might have possibly just smiled at me.
He had spent ten weeks in the hospital. That was 83 days of waiting for him to come home. There were 1,992 hours of having our baby live one hour away from our home. His brother and sister hadn’t even seen him. During that time we had no idea if he would ever get to come home. Infection had taken over his little body making him so sick that he couldn‘t even cry. The machines were doing everything for him except making his heart beat. How does a five pound baby overcome serious illnesses like Spinal Meningitis and Endocarditis? We could see the worry on all of the doctors faces, and the doubt when they told us that they didn’t know why he continued to stay sick. They did not think that he would make it. He was poked and prodded relentlessly with needles. His knee began to bulge where infection had started to attack his bone. His foot had been burned from the inside of the vein out to the top of his skin where medicine had eaten it away. We would visit him, and he would be unrecognizable at times with all of the tubes, wires, and masks that were covering him. We could not hold him, we could only stroke his hand and pat his tiny head. If he was smiling at me now, he was telling me that he was OK. That he was going to be OK. How could he possibly be OK after all of that? He couldn’t have just smiled at me.
Finally the day came when he started to get better. His body began to heal. We learned that he had a genetic disorder which would give him many struggles in his life, but we knew that our little boy was special. We still believed that we did not deserve this, but in a different way. We did not deserve this blessing. He was much stronger than anybody had given him credit for, and now he might be smiling at me.
We had named him Carter which means “one who carries or carts”. Yes, he has a lot to carry in his life, but we will be there to ease the burden. We will be there to support him, and love him, and watch him change the world. He will carry us on this journey. We are part of his team. We are Team Carter.
He had been home for three months. I’m talking to him and waiting for his Occupational Therapist to come for a visit. I think that he just smiled at me. The therapist comes into our home, talks to Carter, and asks “When did he start smiling?”