Taylor did very well for the first 7 days, considering he was now down to 1 lb 1.7 oz. Then at 8 days old he started having more problems breathing so they put him on the oscillator (new high tech ventilator that pumps 600 breaths a minute). At 11 days old he developed pneumothorax (aveoli's in lungs bursting), his body was filling with carbon dioxide, the doctors said it didn't look good. We had Taylor baptized. They put in 2 chest tubes. That seemed to work, Taylor pulled out one tube 24 hours later. But, that was ok.
You can see the tubes on his side under the gauze in the photo. See that gorgeous blonde hair? At 14 days old, Taylor, got his first feeding of .5 cc of my breast milk. He tolerated that very well so they slowly increased his feedings. At this point Taylor had a trach infection so he was given more antibiotics and he now weighed 1lb. 5.3 oz. Christmas day was a hard day for all of us, we had to celebrate it without Taylor at home with our 3 year old son, Austin. We then went to the hospital and celebrated with Taylor. He received 3 bears, a santa face and stocking from the volunteers at the hospital. His oxygen level was increased to 45% as he wasn't saturating his oxygen very well.
The next couple of days went by pretty uneventfully except for the minor things to deal with of sugar levels being up and down and oxygen levels up and down. He started having problems with his kidneys due to the antibiotics that he was on so they were stopped to improve his kidney function and given diuretics. He was tolerating 4cc per hour of my milk by Dec. 29, 1997. Taylor had another head ultrasound which showed the same grade one brain hemmorage but it wasn't affecting his so they weren't worried about it. It seemed that all was going well and that we were definately bringing Taylor home in due time. I was told that he would probably come home with oxygen because his lungs were really bad. He had emphysema and severe chronic lung disease, these developed from the ventilator that he was on. It kept him alive, but, did severe damage to keep him alive.
At 21 days old I noticed Taylor's leg was swelling up around a IV cutdown site and they said don't worry about it, it can stay in there for up to 3 weeks. On January 9, 1998 I received a phone call that my son had a severe chemical burn to his leg from that IV that I questioned and that they were calling in a plastic surgeon to look at it. I rushed to the hospital where they showed me my son's leg. I was horrified to see that his leg from the ankle to the knee was completely burned. The plastic surgeon told me that my son needed a skin graft when he was more stable they would do it. They would take skin from his groin area and put it on his leg. I was devastated. It was one more thing that my son would have to deal with that was unnecessary pain for my baby. That was a step back in his health.
I got to change my son's diaper for the first time when he was 36 days old. That was the strangest feeling in the world. Taylor's diapers were specially made for him out of a preemie diaper, cut down to size. I almost felt out of place but, it felt wonderful to know that I was doing something motherly to my son besides give him my milk through a tube. I was extremely proud! They weighed each diaper to make sure that he was putting out urine to compensate what they were putting in him through the iv.
I received a phone call on January 15, 1998 at 4:00 p.m. that my son wasn't doing well and they didn't think that he was going to make it and that I should get there asap. I reached Mark and we both arrived at the hospital at the same time and they said that Taylor was sedated because his oxygen level had fallen and was only at 30% saturation and his carbon dioxide level was at 150. They said that my baby was going to die and there was nothing that they could do to help him this time. His right lung collapsed and 1/2 of his left lung, they couldn't get them open. He was slowly deteriorating. I asked them to do another blood gas on him and that came back bad. They said that his acid level was 6.5 and that it was deteriorating his organs. His co2 level was topping out the machines at 260+ so they turned that machine off. I called my family to tell them to come up there as Taylor wasn't going to pull through this one and I wanted them to all get the chance to hold my son. I told the doctors that I wanted to hold Taylor for the first time.
I can't express to you how it felt to hold my son in my arms for the first time, and it wasn't for life, it was for his death. It was devastating. Mark and I held him for a long time and my family got there and I allowed them to all come in and take their turns holding him for a special memory in the minds and hearts. It was hard to believe that I was going to be telling my son good-bye and here you go lord, he is all yours. I wasn't ready for that. All I ever wanted was to have Taylor home with me. After 8 agonizing hours, Mark and I made the painful and hard decision to remove my life support as we couldn't bare to prolong his death. At 5:00 a.m. on January 16, 1998 my son was disconnected. I was holding my son before, during, and after he was disconnected. He gasped for air and I was crushed. His heart beat until 5:45 a.m. and then he died in my arms and my grieving for a lifetime began.
This is the first time I held my son without machines. And a picture of him without any tubes. I miss my son today just as I did the day he left me to join heavens arms. Some people say "you'll get over it." But, you never get over it, you just learn how to get by each day without crying all the time, it gets easier. How do you tell a 3 year old that their brother isn't ever going to be seen again? He's gone forever? You don't. They just learn with time. I give special thanks to the dr's and nurses of the NICU for giving my son every possible chance to come home with me. I thank god for giving me 38 beautiful days with Taylor.
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