Sunday, September 9, 2007
| Okay...now that I've posted AJ's history, we're finally up to date. He finally got his Pacer gait trainer walker last Tuesday . I have been soooo excited and could hardly wait to get it. Now that we have, AJ doesn't like it. He cried and cried...and CRIED when we put him in it. it was so frustrating. I cried. Okay, this is finally his chance to move around on his own and he doesn't want any part of it. Finally, yesterday (Saturday) he stayed in for a little while without crying. He's very stubborn and only wants to do what he wants to do. I have found that transitioning from baby days to toddler very difficult. I think it mainly my fault, because I have been very protectective of him. He's spoiled rotten because we were just so glad to have him. However, he's not an infant anymore, but I don't think he realizes it. How do I get through this transitioning stage? Please help! |
Saturday, September 8, 2007
Anyway, needless to say, that night a miracle occurred. AJ's blood pressure stabilized (they took him off all blood pressure meds), he finally urniated (which confirmed that his kidneys had not failed), the hole in his heart closed (without surgery), and his lungs stop bleeding (his body began accepting blood and platelets). Whew, what an incredible night and it all happened before the midnight (while the pessimisistic doctor was still on duty). And of course, our answer to withdraw care was a definite "NO"!
Over the nexts few weeks we didn't have any major severities, however he still had hydrocephalus and would have to have surgery. He recovered very quickly from the surgery and three weeks later, he was 4 lbs, 12 oz (still very tiny, but he was strong and definitely a fighter).
I guess overall we've been extremely lucky because the first year home, we didn't even have an emergency room visit and to this day, we've not had any shunt malfunctions. This past year, was somewhat difficult. We've have numerous ER visits (all very scary) but they were all a result of gastric reflux which caused him to dehydrate and need fluids. He eats very well and had not had to have a feeding tube since we left the NICU.
I guess the most difficult part has been the cp diagnosis. We didn't know what to expect. Everybody kept telling us that he would "catch up" by the time he turned 2. Well, he'll turn 3 on the 24th of this month and he still doesn't have any trunk control. He can sit unassisted for all of 5 seconds before falling over. His vocabulary is very limited. He only says a few words right now, but we are definitely sure that his cognitive ability is growing.
There are many rough days, but for the most part I'm blessed and really can't complain. AJ is a tremendous blessing and his dad and I have both developed enormous love and growth since his birth.
Over the nexts few weeks we didn't have any major severities, however he still had hydrocephalus and would have to have surgery. He recovered very quickly from the surgery and three weeks later, he was 4 lbs, 12 oz (still very tiny, but he was strong and definitely a fighter).
I guess overall we've been extremely lucky because the first year home, we didn't even have an emergency room visit and to this day, we've not had any shunt malfunctions. This past year, was somewhat difficult. We've have numerous ER visits (all very scary) but they were all a result of gastric reflux which caused him to dehydrate and need fluids. He eats very well and had not had to have a feeding tube since we left the NICU.
I guess the most difficult part has been the cp diagnosis. We didn't know what to expect. Everybody kept telling us that he would "catch up" by the time he turned 2. Well, he'll turn 3 on the 24th of this month and he still doesn't have any trunk control. He can sit unassisted for all of 5 seconds before falling over. His vocabulary is very limited. He only says a few words right now, but we are definitely sure that his cognitive ability is growing.
There are many rough days, but for the most part I'm blessed and really can't complain. AJ is a tremendous blessing and his dad and I have both developed enormous love and growth since his birth.
Wednesday, September 5, 2007
Hello,
I'm mom to Aaron (AJ), born September 24, 2004. AJ was born at 26 weeks, weighd 1 lb and 8 oz. Like all preemie moms, I was also told about all the things that could go wrong with babies born this early. We prayed and hoped for the best.
Three days after he was born, he had his first CT scan. It revealed that AJ had a serious brain hemmorage (grade III on the right and IV on the left). He would most likely have to get a shunt implant. "A what???". We (my husband and I were so dumbfounded!) Anyway, fluid didn't progress really fast and he was growing stronger every day. He was breathing unassisted, but still very small and on an ng feeding tube (inserted through his nostril. AJ received his shunt when he was 2 months old on December 3, 2004. (We had a wonderful nuerosurgeon and the surgery was very successful). We brought him home Christmas Eve (3 weeks after the surgery and 90 days of the NICU, the best Christmas present we could ask for!
In the beginning things were really bad for our baby. The doctors (and nurses) were not optimistic at all of his chances for survival. At 7 days old, the NICU Pediatrician told of that AJ's "lungs were severely underdeveloped and were severely bleeding, he had a hole in his heart, he was maxed out on 5 blood pressure meds at it still was still severely low, he had a severe brain bleed which the neurologists felt like he would never recover from therefore he would always be severely mentally retarded, AND his kidneys had not functioned in the past 12 hours! You should just withdraw care IMMEDIATELY, you need more than a miracle for this baby to live through the next few hours! And anyway, do you want to take care of this kind of child all your life? Withdrawing care is your only option" She also said told his nurse on duty, "let her hold him now because this will probably be the only time she'll get to." OH MY GOD! What did she just say???
It was about 4:30 that afternoon when I was given that speech. The doctor said she would be on duty until midnight so I could let her know (if he lived 'til then). I was at the hospital alone. I was in complete shock and horror. I just cried softly at his bedside. How could this be happening to my prcious baby boy? I just could not wrap my mind around the uncaring words that were still ringing in my ears... my mind...my heart. "You should withdraw care immediately, he won't live, he'll be mentally retarded, do you want to take care of this kind of child the rest of your life..."
I'm mom to Aaron (AJ), born September 24, 2004. AJ was born at 26 weeks, weighd 1 lb and 8 oz. Like all preemie moms, I was also told about all the things that could go wrong with babies born this early. We prayed and hoped for the best.
Three days after he was born, he had his first CT scan. It revealed that AJ had a serious brain hemmorage (grade III on the right and IV on the left). He would most likely have to get a shunt implant. "A what???". We (my husband and I were so dumbfounded!) Anyway, fluid didn't progress really fast and he was growing stronger every day. He was breathing unassisted, but still very small and on an ng feeding tube (inserted through his nostril. AJ received his shunt when he was 2 months old on December 3, 2004. (We had a wonderful nuerosurgeon and the surgery was very successful). We brought him home Christmas Eve (3 weeks after the surgery and 90 days of the NICU, the best Christmas present we could ask for!
In the beginning things were really bad for our baby. The doctors (and nurses) were not optimistic at all of his chances for survival. At 7 days old, the NICU Pediatrician told of that AJ's "lungs were severely underdeveloped and were severely bleeding, he had a hole in his heart, he was maxed out on 5 blood pressure meds at it still was still severely low, he had a severe brain bleed which the neurologists felt like he would never recover from therefore he would always be severely mentally retarded, AND his kidneys had not functioned in the past 12 hours! You should just withdraw care IMMEDIATELY, you need more than a miracle for this baby to live through the next few hours! And anyway, do you want to take care of this kind of child all your life? Withdrawing care is your only option" She also said told his nurse on duty, "let her hold him now because this will probably be the only time she'll get to." OH MY GOD! What did she just say???
It was about 4:30 that afternoon when I was given that speech. The doctor said she would be on duty until midnight so I could let her know (if he lived 'til then). I was at the hospital alone. I was in complete shock and horror. I just cried softly at his bedside. How could this be happening to my prcious baby boy? I just could not wrap my mind around the uncaring words that were still ringing in my ears... my mind...my heart. "You should withdraw care immediately, he won't live, he'll be mentally retarded, do you want to take care of this kind of child the rest of your life..."
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