It was full of lots of love! You had so many people that loved you cared about you. You helped your Daddy and I become parents even at the hardest times. You taught us what unconditional love was and were adored by so many.
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| All these people came to see you in the hospital |
You attended your first wedding about a week after you got home. Daddy was in the wedding. You made your presences known! I was holding you and passed you over to Kristy. As I passed you, one of the leads came off you and your machine went off. The thing about the machine was that it could not be turned off. The problem had to be fixed. Luckily we got it fixed pretty quickly and no one seemed to notice. Nickie did tell us later that she could hear it in her wedding video.
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| At the Bateman reception |
You had a lot of complications due to the brain damage. I said earlier that you didn't cry or swallow. You also didn't process what you saw and heard. We were pretty sure you could hear and see, but your brain just didn't know what to do with the information. There were a few times you would turn your head to the area of the room Daddy was in when you heard him talking. Body temperature control was another thing you couldn't do. We took your temperature regularly and helped your regulate it. A couple times it dropped down to the low 90s (98.6 is normal) and it got as high as 107. The super highs were scary. The lows we were able to get back up by putting lots of clothes on you, wrapping you in blankets and hats and sometimes a heating pad. You reacted pretty well to Tylenol/Motrin and cool baths. I have two stories where it went really high. In July we couldn't get it to come down and we ended up taking your to the ER. We ended up staying several days but the doctor couldn't figure out why the spike in temperature. Looking back, I feel like it was just the lack of your body being able to regulate. The 2nd story was a much scarier time. We were on the way to Birmingham for a check up. Your hands and feet were extremely cold but you began projectile vomiting (you generally didn't spit up because you were fed through your g-tube). We pulled over and you were burning up! We turned around and went to the closet hospital we knew where was. It happen to be Baptist South where you spent the first days of your life in the NICU. They got your temp down and arranged for you to be transported to Children's Hospital in Birmingham. Again, the doctors couldn't really find a reason for the temperature spike. You stayed a few days for them to try to figure things out. This time you were in the PICU. It was scarier because we didn't really know what was going on. I am almost certain the fever caused some additional brain damage because you regressed.
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| Burrito Maddy |
Prior to the spike, you were pushing yourself up on your arms and supporting your head. After, you didn't. Your seizure activity also increased. You were on anti-seizure medication from birth. I don't really remember seizures being that prominent until after the September fever spike. We got you in with a pediatric neurologist and had a video EEG. They put all kinds of leads on your head and we hung out in a room forever with a camera on us. When I saw what I thought was seizure activity I hit a trigger. This was sometime in January. One of the last pictures I took of you was with crazy hair after we washed all the glue out of your hair.
You only cried 2 times in your life. When you got your 6 month shots you gave a little cry and when we got your ears pierced when you were about 8 months old you let us know you didn't like it. Don't worry, your sister cries enough for you ;) She was really a good baby too. More on her later, she'll be 7 in 7 days!
One more post to go to finish your story. Next is the last few days of your life.
Click here to read part 3
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