I haven't posted recently on how Abby is doing medically. I'll start with the easy stuff and then talk about her upcoming surgery!
* She is completely off of the vent while awake and only has it on during her two naps and bedtime. She is loving the freedom and so are we! We'll head back to the pulminologist in November after Abby has healed from her surgery. Hopefully, we will begin weaning off of the vent completely!!
* We're nearing the end of her time wearing a helmet. The growth seems to be slowing, so she may only have it a few more weeks. Her head definitely looks a lot better, and I'd be fine if it didn't get any more round than it is now.
* Abby is still...ahem...a bit chunky. She gained another pound this month, despite cutting back her calories. I convinced her GI doctor to cut it back a little more drastically this time because her weight is really getting in the way of her development. She's now just taking a few more calories than a typical baby her age would. Her last weight was 21 lbs 12 oz. She didn't grow (lengthwise) any last month, so she's only in the 4th percentile for height...and the 70th for weight. Based on proportion, she's off the chart. Hey, we all have to excel at something!! :)
* My girl is making some awesome gains in both physical therapy and speech. Her arms and legs are getting stronger and she's able to stand for longer periods. Her therapist and I both think Abby might just skip crawling altogether and go straight to walking. Abby is also signing "more" very well now and is able to tolerate her speaking valve better than she has since she's been off of the vent.
* Abby's cleft palate surgery is on Thursday, the 29th. We will be heading to RMH on Wednesday evening so that we can be at the hospital bright and early at 6:45 a.m.!! During the surgery, they will repair her cleft soft palate (the one way in the back that you can feel if you try to swallow your tongue) create a uvula (the hangy-ball thing), do an ABR hearing test, a bronchoscopy (remember, B is for bronchoscopy?), check out her ears a little more closely (no one has ever been able to see her left ear drum), and attempt to put in tubes (our ENT said hers were the smallest ear canals he has ever seen...). That's a lot and will make for a much longer time in the OR, but all of these things need to be done under anesthesia, so we're glad to do it all at once. Our ENT, an audiologist, and our maxillofacial surgeon will tag-team this surgery to get everything done.
If all goes according to plan, the procedures should take a total of between 3 1/2 - 4 hours. Abby will most likely be on her vent all day and all night while she sleeps off the anesthesia, but they won't send her home until she's back at her baseline of being off while awake. If she does that quickly, we'll be able to go home about 24 hours after surgery. I will stay at the hospital overnight with Abby, and will hopefully get to catch a quick shower and nap at RMH when Matt comes over. I don't want Abby to be alone, as she is very used to having someone there all of the time and gets upset when she wakes up and no one is with her. It's going to be a strange new place, she is going to feel terrible, and she'll have those awful arm braces (called "No-nos") on to keep her from putting her fingers in her mouth. I want her to have the comfort of knowing I'm there.
This is a picture of what the No-No's look like. I have no idea who this kid is. I just googled No-No's images and this came up. :)
I'm starting to feel a bit anxious about all of this, as Abby's last surgery (g-tube) was in the NICU and the last time she had a bronchoscopy was when she got her trach. I trust our doctors and know that this is relatively minor compared to some of the surgeries they've thrown out at us (read: take out her entire rib cage and put in new titanium vertical ribs!!) I just know how hard a "stick" Abby is and dread the whole IV process. As vain (Ha! No pun intended!) as it is, I really don't want them to have to go to her head. I also worry about the germs in the hospital and pray she doesn't catch anything while she is there. Most of all, I'm just worried that she'll lose some of the progress she's made. I've heard of kids having to go back on the vent after surgery who can't get back off again...that would be horrible.
I think I'll probably feel anxious every time Abby has to go back in the hospital, just because she's already been through so much at less than a year old. It's inevitable.
But, we have had a lot of people praying us through the last year, and I know that you guys will continue to pray for the next chapter of the book God is writing for Abby. :)
* She is completely off of the vent while awake and only has it on during her two naps and bedtime. She is loving the freedom and so are we! We'll head back to the pulminologist in November after Abby has healed from her surgery. Hopefully, we will begin weaning off of the vent completely!!
* We're nearing the end of her time wearing a helmet. The growth seems to be slowing, so she may only have it a few more weeks. Her head definitely looks a lot better, and I'd be fine if it didn't get any more round than it is now.
* Abby is still...ahem...a bit chunky. She gained another pound this month, despite cutting back her calories. I convinced her GI doctor to cut it back a little more drastically this time because her weight is really getting in the way of her development. She's now just taking a few more calories than a typical baby her age would. Her last weight was 21 lbs 12 oz. She didn't grow (lengthwise) any last month, so she's only in the 4th percentile for height...and the 70th for weight. Based on proportion, she's off the chart. Hey, we all have to excel at something!! :)
* My girl is making some awesome gains in both physical therapy and speech. Her arms and legs are getting stronger and she's able to stand for longer periods. Her therapist and I both think Abby might just skip crawling altogether and go straight to walking. Abby is also signing "more" very well now and is able to tolerate her speaking valve better than she has since she's been off of the vent.
* Abby's cleft palate surgery is on Thursday, the 29th. We will be heading to RMH on Wednesday evening so that we can be at the hospital bright and early at 6:45 a.m.!! During the surgery, they will repair her cleft soft palate (the one way in the back that you can feel if you try to swallow your tongue) create a uvula (the hangy-ball thing), do an ABR hearing test, a bronchoscopy (remember, B is for bronchoscopy?), check out her ears a little more closely (no one has ever been able to see her left ear drum), and attempt to put in tubes (our ENT said hers were the smallest ear canals he has ever seen...). That's a lot and will make for a much longer time in the OR, but all of these things need to be done under anesthesia, so we're glad to do it all at once. Our ENT, an audiologist, and our maxillofacial surgeon will tag-team this surgery to get everything done.
If all goes according to plan, the procedures should take a total of between 3 1/2 - 4 hours. Abby will most likely be on her vent all day and all night while she sleeps off the anesthesia, but they won't send her home until she's back at her baseline of being off while awake. If she does that quickly, we'll be able to go home about 24 hours after surgery. I will stay at the hospital overnight with Abby, and will hopefully get to catch a quick shower and nap at RMH when Matt comes over. I don't want Abby to be alone, as she is very used to having someone there all of the time and gets upset when she wakes up and no one is with her. It's going to be a strange new place, she is going to feel terrible, and she'll have those awful arm braces (called "No-nos") on to keep her from putting her fingers in her mouth. I want her to have the comfort of knowing I'm there.
This is a picture of what the No-No's look like. I have no idea who this kid is. I just googled No-No's images and this came up. :)
I'm starting to feel a bit anxious about all of this, as Abby's last surgery (g-tube) was in the NICU and the last time she had a bronchoscopy was when she got her trach. I trust our doctors and know that this is relatively minor compared to some of the surgeries they've thrown out at us (read: take out her entire rib cage and put in new titanium vertical ribs!!) I just know how hard a "stick" Abby is and dread the whole IV process. As vain (Ha! No pun intended!) as it is, I really don't want them to have to go to her head. I also worry about the germs in the hospital and pray she doesn't catch anything while she is there. Most of all, I'm just worried that she'll lose some of the progress she's made. I've heard of kids having to go back on the vent after surgery who can't get back off again...that would be horrible.
I think I'll probably feel anxious every time Abby has to go back in the hospital, just because she's already been through so much at less than a year old. It's inevitable.
But, we have had a lot of people praying us through the last year, and I know that you guys will continue to pray for the next chapter of the book God is writing for Abby. :)
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Jamie Trickle