This week didn't bring many changes for Ayden other than in his personality. I am not sure if it is the fact that he hates the taste of his formula, that his throat is sore from enzymes, that is little bottom is so raw that the open sores bleed all the time, or the fact that he is just getting older, but Ayden sure has been fussy this week. He has began to stay awake in between feeds more often and is beginning to make more sounds other than crying and grunting. He has not progressed into happy sounds but more whimpers and higher pitched squeals and grunts have been coming out. We are hoping that the "coo"s will be coming around shortly as he seems to be responding with whimpers when we talk to him when hes mad.
This week his feedings have gradually gotten worse. He has taken anywhere from 5-40ccs at most when his minimum is 80 for his weight. He acts hungry before and after he takes his bottle but has been gagging, screaming, and throwing his body around when the bottle is placed in his mouth. I just cant figure out why he is being so temperamental about eating. I feel like the g-tube is a good option for him but I don't feel like it is an answer to his problems. He used to eat 60-80ccs when he was only required to eat 40-50ccs and now he is not even eating half of what he is supposed to now. I want explanations as to possible reasons why he is acting this way and not just a crutch to send him out the door. Don't get me wrong, I am ecstatic about bringing him home but I feel like we don't have a direction of which to take to help improve his feedings even with the g-tube once he is at home.
Meanwhile, It seems as though his enzymes are doing their job. He seems to be getting a bit burnt out on his applesauce but still does well with it overall. His weight has been stable and has been gaining and losing each day for the past week....The highest he has been this week was 7lb 4oz but has lost and gained numerous times. He now weights 7lb 3oz and is 19.5 inches long. The enzymes are helping with nutrition and weight gain but have taken a major tole on his bottom. His little booty has so many open bleeding sores and no cream they have tried has made any improvements. Now, 1-2 times a day we change his bottom and leave it open to air or give him a sitz bath. Not many improvements so far but any day that we don't see blood in his diaper we are a little bit relieved. I have a feeling that this has a lot to do with his recent temperament though.
Within the past week he has also had numerous eye and hearing exams. They have not said anything bout changes in his retinopothy but they have become very concerned with his pressures. In terms of pressures, high pressures in the eye usually is connected with glaucoma, we are still waiting to hear more about this as that have checked him every day for the past 5 days. In addition to the high pressures they say his cataract is still progressing but we still have a while before a surgery for that is in the works. We are still crossing our fingers in hopes of him having some vision in his right eye but for now it seems as though he doesn't see much as he rarely ever looks at anything other than lights. This week they tried numerous hearing exams but said there was too much interference. I am unsure what that means but they are supposed to try again within the next week or so. Even though it seems as though he hears we want to be certain before he goes home. One of the reasons we are so concerned with the hearing factor is because Ayden's daddy is deaf (he has about 85%-90% hearing loss) and his family did not find this out until he was almost 3. To me that is a long time to go without noticing a disability as prominent as that. I want to know anything and everything that even seems the slightest bit odd about Ayden as to prepare ways to help him overcome anything that may come his way.
So, Ayden's big g-tube surgery is supposed to be next week but we are still unsure as to which day it will be. The surgeon told us that it would be a 3-4 hour surgery as he will have 3 hernias repaired, a circumcision, and his g-tube placement. The neonatologist told us that he would be coming home within 2 weeks after the surgery. We have waited for this for so long and now that the time is coming I am beginning to get nervous. My biggest fear is getting his medicines mixed up or not keeping on schedule with them and I know Ayden's daddy will not be much help in that aspect. He refuses to read directions and can not be on time for anything. With as many medicines as he will be getting and the equipment he will be coming home on we will have lots of training to go through within the next 2 weeks as well. Nervousness has definitely set in!
Wish us luck & please pray for Ayden in hope that his surgery will go smoothly...
On a more solemn note:...Last week was quite hard in a different way...One of Ayden's neighbors passed away. She was a 25 weeker who was about a month and a half old. She had been doin significantly better than most of the other micro preemies I have seen that early on(was already on a high flow cannula) but things turned for the worse after her pda-ligation surgery and she passed away. My heart goes out to her family during this time. RIP Jazmyne...you were very loved & will be missed!
This week his feedings have gradually gotten worse. He has taken anywhere from 5-40ccs at most when his minimum is 80 for his weight. He acts hungry before and after he takes his bottle but has been gagging, screaming, and throwing his body around when the bottle is placed in his mouth. I just cant figure out why he is being so temperamental about eating. I feel like the g-tube is a good option for him but I don't feel like it is an answer to his problems. He used to eat 60-80ccs when he was only required to eat 40-50ccs and now he is not even eating half of what he is supposed to now. I want explanations as to possible reasons why he is acting this way and not just a crutch to send him out the door. Don't get me wrong, I am ecstatic about bringing him home but I feel like we don't have a direction of which to take to help improve his feedings even with the g-tube once he is at home.
Meanwhile, It seems as though his enzymes are doing their job. He seems to be getting a bit burnt out on his applesauce but still does well with it overall. His weight has been stable and has been gaining and losing each day for the past week....The highest he has been this week was 7lb 4oz but has lost and gained numerous times. He now weights 7lb 3oz and is 19.5 inches long. The enzymes are helping with nutrition and weight gain but have taken a major tole on his bottom. His little booty has so many open bleeding sores and no cream they have tried has made any improvements. Now, 1-2 times a day we change his bottom and leave it open to air or give him a sitz bath. Not many improvements so far but any day that we don't see blood in his diaper we are a little bit relieved. I have a feeling that this has a lot to do with his recent temperament though.
Within the past week he has also had numerous eye and hearing exams. They have not said anything bout changes in his retinopothy but they have become very concerned with his pressures. In terms of pressures, high pressures in the eye usually is connected with glaucoma, we are still waiting to hear more about this as that have checked him every day for the past 5 days. In addition to the high pressures they say his cataract is still progressing but we still have a while before a surgery for that is in the works. We are still crossing our fingers in hopes of him having some vision in his right eye but for now it seems as though he doesn't see much as he rarely ever looks at anything other than lights. This week they tried numerous hearing exams but said there was too much interference. I am unsure what that means but they are supposed to try again within the next week or so. Even though it seems as though he hears we want to be certain before he goes home. One of the reasons we are so concerned with the hearing factor is because Ayden's daddy is deaf (he has about 85%-90% hearing loss) and his family did not find this out until he was almost 3. To me that is a long time to go without noticing a disability as prominent as that. I want to know anything and everything that even seems the slightest bit odd about Ayden as to prepare ways to help him overcome anything that may come his way.
So, Ayden's big g-tube surgery is supposed to be next week but we are still unsure as to which day it will be. The surgeon told us that it would be a 3-4 hour surgery as he will have 3 hernias repaired, a circumcision, and his g-tube placement. The neonatologist told us that he would be coming home within 2 weeks after the surgery. We have waited for this for so long and now that the time is coming I am beginning to get nervous. My biggest fear is getting his medicines mixed up or not keeping on schedule with them and I know Ayden's daddy will not be much help in that aspect. He refuses to read directions and can not be on time for anything. With as many medicines as he will be getting and the equipment he will be coming home on we will have lots of training to go through within the next 2 weeks as well. Nervousness has definitely set in!
Wish us luck & please pray for Ayden in hope that his surgery will go smoothly...
On a more solemn note:...Last week was quite hard in a different way...One of Ayden's neighbors passed away. She was a 25 weeker who was about a month and a half old. She had been doin significantly better than most of the other micro preemies I have seen that early on(was already on a high flow cannula) but things turned for the worse after her pda-ligation surgery and she passed away. My heart goes out to her family during this time. RIP Jazmyne...you were very loved & will be missed!
Your little miracle has certainly had a big week and I'm not surprised he's fussy!! Just the sores alone would make me a raging tiger! You are all in our prayers and will continue to be so. I hope this week sees much improvement and gives you the answers you seek about his belly, eyes, and ears.
ReplyDeleteAw poor Ayden I hate to hear about his little bottom and eating issues as we have been down that same road. We will be praying for Ayden's surgeries to go well.
ReplyDeletePoor little guy! I am hoping after the g-tube surgery you won't have to worry about the nutrients and he can take his time to get back into oral feedings. Whatever gets him home! Thinking of you.
ReplyDelete