Thursday, June 19, 2014
Happy 3rd birthday! (a few weeks late)
Little Miss Zadie turned 3 years old a few weeks ago. Her birthday fell on a Saturday, so we had a great day. We went to Jonathan's soccer game, out for breakfast, Build a Bear workshop, ice cream, and then home for cake and presents. It's amazing to look back over the last three years and to see how far she's come. More good stuff ahead, I'm sure!
Thursday, May 29, 2014
Finally recovered! (I think)
Last Thursday, two weeks and two days after Zadie's tonsillectomy and two days after her last ER trip for bleeding, she woke up early in the morning and was coughing up blood. This time, it was coming out of her trach as well. It was a pretty large amount of bright red blood that she coughed into a paper towel. I called the ENT's office when they opened at 8 am (the ENT resident on call didn't return either of my calls...hmmmph) and they asked if we could come down there to their ER (at CHOP, in Philly.) I had already assumed that would be their suggestion/request and I didn't really want to go back to St. Barnabas since they didn't know what to do with us anyway. So we headed down there. Since it's a two hour drive, the nurse told me to call en route if there was more bleeding and they would possibly reroute us to another, closer hospital. Luckily, we didn't need to do that.
CHOP's ER monitored her and the doctors told us they were deciding whether to take her into the OR to try to figure out exactly where the bleeding was coming from and cauterize the area or just admit her for observation. Either way, she was not going home that night. One of the doctors told us that bleeding is normal after a tonsillectomy, although it's rare, occurring in about 1% of cases. When bleeding does occur, it's usually earlier in the recovery period, around 7-10 days post op. And even though bleeding is normal, it's always taken seriously because of where the tonsils are located. Because of the OR possibility, they wouldn't let Zadie eat or drink anything but clear liquids. The worst part was her getting an IV. They were good enough that they got it in on the first try, but it was pretty awful. She was hysterical, and kept crying "Mommy, Mommy!" I felt terrible.
She finally got into her room around 7 pm. We decided BJ would go home with Jonathan and Beatrix and I stayed with Zadie. It's really hard to be so far away from everyone! On Friday morning, they allowed Zadie to have regular food again and she ate a bit and drank and was cleared to go home, although we had to wait awhile for BJ and the kids to make it back. Traffic was terrible thanks to the start of Memorial Day weekend.
Since Thursday morning, there has been no more bleeding and (knock on wood) I think we're in the clear!
CHOP's ER monitored her and the doctors told us they were deciding whether to take her into the OR to try to figure out exactly where the bleeding was coming from and cauterize the area or just admit her for observation. Either way, she was not going home that night. One of the doctors told us that bleeding is normal after a tonsillectomy, although it's rare, occurring in about 1% of cases. When bleeding does occur, it's usually earlier in the recovery period, around 7-10 days post op. And even though bleeding is normal, it's always taken seriously because of where the tonsils are located. Because of the OR possibility, they wouldn't let Zadie eat or drink anything but clear liquids. The worst part was her getting an IV. They were good enough that they got it in on the first try, but it was pretty awful. She was hysterical, and kept crying "Mommy, Mommy!" I felt terrible.
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| Sleeping in the ER |
She finally got into her room around 7 pm. We decided BJ would go home with Jonathan and Beatrix and I stayed with Zadie. It's really hard to be so far away from everyone! On Friday morning, they allowed Zadie to have regular food again and she ate a bit and drank and was cleared to go home, although we had to wait awhile for BJ and the kids to make it back. Traffic was terrible thanks to the start of Memorial Day weekend.
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| Feeling pretty good |
Since Thursday morning, there has been no more bleeding and (knock on wood) I think we're in the clear!
Tuesday, May 20, 2014
14 days post op
Zadie had her tonsillectomy two weeks ago today. She is eating and drinking pretty much like normal, she hasn't had any pain medication for over two days, and her breath smells much better. So I figured we were past the whole recovery period. Then this morning, I walked into her room to check on her one more time before work and I see this:
It was pretty shocking to see the big blood stain on her pillow. She didn't have a night nurse last night, but I do check on her periodically through the night, and she's hooked up to a pulse ox that alarms if her heart rate goes too low or too high or if her oxygen levels go too low. She had a quiet night, and she must have had her head on this stain the first time I checked on her this morning, because I definitely didn't see it. BJ checked on her in the morning as well and didn't see it. I noticed dried blood on her lips, so I could only assume that the blood came from her mouth.
I called the ENT's office when they opened and the nurse there asked how big the blood stain was, and when I described it, she said that Zadie should be looked at in the ER right away. She said while it wasn't usual to have bleeds that long after the operation, it wasn't unheard of. So once again, we go off to the ER!
Zadie really hates the hospital now, and cries even when they're putting the hospital band on her ankle and when they're weighing her. She was really upset after getting weighed, and that's when the tech took her temperature with the forehead thermometer, and it came up as 101. Zadie's nurse and I were both surprised at that, since she hadn't had a temp earlier.
When the doctor came in, he didn't really know what to do. He looked at the tonsil area as well as she would let him and said he didn't see any blood. He listened to her lungs and asked about the congestion (she has a bit of cold/allergies right now). He suggested a chest xray to rule out pneumonia because of the "fever" and her congestion! I suggested that we try the temp again when she's calm before we go running to get a chest xray, because I was pretty sure she did not have pneumonia.
After that, he really didn't know what to do, and even asked me who he should call. When I hesitated, he said, "well, since CHOP is so far away, maybe I'll call the pediatrician." I told him the ped is not going to know at all what to do, so CHOP is probably the best bet. Then he asked me for CHOP's phone number.
Later on, the tech came in to take Zadie's temp again, and it was 98.2. I was glad that I knew enough not to just immediately agree to a totally unnecessary chest xray! Meanwhile, he had consulted with CHOP, and their suggestions were the same as a week and a half ago, transfer her to CHOP (no thanks...just for the distance) or admit her for observation. This time I asked what we could do to avoid the admission. We agreed that we would hang out in the ER for a couple of hours and see how it goes. And Zadie entertained herself!
It was pretty shocking to see the big blood stain on her pillow. She didn't have a night nurse last night, but I do check on her periodically through the night, and she's hooked up to a pulse ox that alarms if her heart rate goes too low or too high or if her oxygen levels go too low. She had a quiet night, and she must have had her head on this stain the first time I checked on her this morning, because I definitely didn't see it. BJ checked on her in the morning as well and didn't see it. I noticed dried blood on her lips, so I could only assume that the blood came from her mouth.
I called the ENT's office when they opened and the nurse there asked how big the blood stain was, and when I described it, she said that Zadie should be looked at in the ER right away. She said while it wasn't usual to have bleeds that long after the operation, it wasn't unheard of. So once again, we go off to the ER!
Zadie really hates the hospital now, and cries even when they're putting the hospital band on her ankle and when they're weighing her. She was really upset after getting weighed, and that's when the tech took her temperature with the forehead thermometer, and it came up as 101. Zadie's nurse and I were both surprised at that, since she hadn't had a temp earlier.
When the doctor came in, he didn't really know what to do. He looked at the tonsil area as well as she would let him and said he didn't see any blood. He listened to her lungs and asked about the congestion (she has a bit of cold/allergies right now). He suggested a chest xray to rule out pneumonia because of the "fever" and her congestion! I suggested that we try the temp again when she's calm before we go running to get a chest xray, because I was pretty sure she did not have pneumonia.
After that, he really didn't know what to do, and even asked me who he should call. When I hesitated, he said, "well, since CHOP is so far away, maybe I'll call the pediatrician." I told him the ped is not going to know at all what to do, so CHOP is probably the best bet. Then he asked me for CHOP's phone number.
Later on, the tech came in to take Zadie's temp again, and it was 98.2. I was glad that I knew enough not to just immediately agree to a totally unnecessary chest xray! Meanwhile, he had consulted with CHOP, and their suggestions were the same as a week and a half ago, transfer her to CHOP (no thanks...just for the distance) or admit her for observation. This time I asked what we could do to avoid the admission. We agreed that we would hang out in the ER for a couple of hours and see how it goes. And Zadie entertained herself!
It was clear that Zadie was quite well, so she was discharged with a "You know where to find us, we're always here!"
We don't really know why she had more bleeding. But hopefully that was it!
Sunday, May 18, 2014
Tonsillectomy
It's been a rough week! Zadie had her tonsillectomy at CHOP on Tuesday. She was scheduled to stay over one night. The whole family went down to Philadelphia for the surgery. She was scheduled later in the day, which was nice for getting a later start, but since she had to fast for the surgery, we all had to fast! The surgery went fine. Her adenoids had grown back a bit, so Dr. Javia shaved them down again. I know that adenoids can grow back, but it's only been seven months since her adenoidectomy! I hope they'll stay small.
The plan was for BJ to stay in the hospital with Zadie overnight. Jonathan, Beatrix and I were lucky enough to get a room at the Philadelphia Ronald McDonald House. I will write more about the RMH in another post, because it was such an amazing place. It was my first time at a RMH, and while I've heard nothing but good things about them, I just couldn't believe it. For a "suggested donation" of $15 (meaning they will take less if you can't swing the $15), you get a room that's just as nice as any hotel, plus a fully stocked community kitchen that's open 24/7 and several play areas for the kids.
Zadie required a little bit of oxygen overnight while sleeping, which is not unusual for her after a surgery or when she's sick. We're fully equipped with oxygen at home, so this didn't concern us. Of course, the hospital wanted her completely off oxygen before she was discharged. I understand their position, but for a kid like Zadie, to keep her in the hospital just for something like that (when we can perfectly handle it at home) is silly. She was drinking fine, which was the big requirement. They had also put her IV in her foot, which really bugs me. She's almost 3 years old, potty trained, and she can't get up and walk around! She's always been very hard to find a vein, but I think they could have tried harder to find a vein in one of her arms/hands. They do it once the kids are under anesthesia, so it's not like they're fighting a wiggling child. I kept asking them about taking it out, but they wouldn't take it out until they knew that she was being discharged. But, I wasn't going to let them keep her another day if that meant she was confined to the bed/chair that much longer!
They finally released her and we were on our way. I was kind of (no, really) missing her Gtube, just because she was really fighting us to take her pain medication.
Thursday and Friday (two and three days after surgery), she fought the pain medications really hard. We had to force her to take it just about every time, so she definitely wasn't getting full doses. Probably because of that, she wasn't drinking as much as she should have been. So it was a bit stressful. She was drooling horribly a couple of times, which indicated her pain was out of control, since she wouldn't even swallow her spit. I felt bad that we weren't helping her more.
Friday evening, she took a late nap and woke up about 7 pm, very miserable. She was drooling and I went to wipe her mouth when I noticed bright red blood in her mouth. Everything we were told and all the paperwork we were sent home with said any amount of blood is cause for concern and to call the ENT immediately. She coughed up a big load of mucus and it was streaked heavily with blood. I called the ENT resident on call (since it was 8 pm on a Friday night) and as soon as I told her what was going on, she said, "you have to take her to the nearest ER right now."
So off Zadie and I went. There was no more blood by the time we were at the ER, and the ER doc looked at her tonsils and saw no blood back there. He said he'd call CHOP to consult with them. I figured that they'd send us home. I was wrong! They wanted to admit her to keep an eye on her in case she started bleeding again. Apparently, sometimes there's a small bleed and then later on, a larger bleed. I would normally fight against her being admitted, but I had done enough googling while waiting that I was scared enough to agree. I read about kids who had died from bleeding to death after a tonsillectomy. The tonsils are very close to major arteries, and sometimes, when the scabs start coming off, a kid can bleed out. A friend of mine messaged me on Facebook to tell me about a scary experience her daughter had after her tonsillectomy. Very scary.
The hospital kept Zadie until about 3 pm on Saturday. There was no more blood, and she was drinking pretty well. We had finally gotten to a point where she would take her meds willingly if she could give them to herself (push the syringe), so from then on out, things just improved. She would take her meds when she was supposed to, she was eating a little here and there and drinking better. We started gradually spacing her meds out longer and she did well. Yesterday, Saturday, about 11 days after surgery, was the first day she didn't have any pain meds and did great all day. She's definitely lost weight but I'm hoping she'll re-gain what she lost.
Next up, another sleep study, which is scheduled for July 10.
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| Immediately after surgery, before she woke up |
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| Cracking a little smile! A couple of hours after surgery |
The plan was for BJ to stay in the hospital with Zadie overnight. Jonathan, Beatrix and I were lucky enough to get a room at the Philadelphia Ronald McDonald House. I will write more about the RMH in another post, because it was such an amazing place. It was my first time at a RMH, and while I've heard nothing but good things about them, I just couldn't believe it. For a "suggested donation" of $15 (meaning they will take less if you can't swing the $15), you get a room that's just as nice as any hotel, plus a fully stocked community kitchen that's open 24/7 and several play areas for the kids.
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| Jonathan and Ronald |
Zadie required a little bit of oxygen overnight while sleeping, which is not unusual for her after a surgery or when she's sick. We're fully equipped with oxygen at home, so this didn't concern us. Of course, the hospital wanted her completely off oxygen before she was discharged. I understand their position, but for a kid like Zadie, to keep her in the hospital just for something like that (when we can perfectly handle it at home) is silly. She was drinking fine, which was the big requirement. They had also put her IV in her foot, which really bugs me. She's almost 3 years old, potty trained, and she can't get up and walk around! She's always been very hard to find a vein, but I think they could have tried harder to find a vein in one of her arms/hands. They do it once the kids are under anesthesia, so it's not like they're fighting a wiggling child. I kept asking them about taking it out, but they wouldn't take it out until they knew that she was being discharged. But, I wasn't going to let them keep her another day if that meant she was confined to the bed/chair that much longer!
They finally released her and we were on our way. I was kind of (no, really) missing her Gtube, just because she was really fighting us to take her pain medication.
Thursday and Friday (two and three days after surgery), she fought the pain medications really hard. We had to force her to take it just about every time, so she definitely wasn't getting full doses. Probably because of that, she wasn't drinking as much as she should have been. So it was a bit stressful. She was drooling horribly a couple of times, which indicated her pain was out of control, since she wouldn't even swallow her spit. I felt bad that we weren't helping her more.
Friday evening, she took a late nap and woke up about 7 pm, very miserable. She was drooling and I went to wipe her mouth when I noticed bright red blood in her mouth. Everything we were told and all the paperwork we were sent home with said any amount of blood is cause for concern and to call the ENT immediately. She coughed up a big load of mucus and it was streaked heavily with blood. I called the ENT resident on call (since it was 8 pm on a Friday night) and as soon as I told her what was going on, she said, "you have to take her to the nearest ER right now."
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| Waiting in the ER |
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| Like she owns the place! Waiting for discharge, roaming the halls. |
The hospital kept Zadie until about 3 pm on Saturday. There was no more blood, and she was drinking pretty well. We had finally gotten to a point where she would take her meds willingly if she could give them to herself (push the syringe), so from then on out, things just improved. She would take her meds when she was supposed to, she was eating a little here and there and drinking better. We started gradually spacing her meds out longer and she did well. Yesterday, Saturday, about 11 days after surgery, was the first day she didn't have any pain meds and did great all day. She's definitely lost weight but I'm hoping she'll re-gain what she lost.
Next up, another sleep study, which is scheduled for July 10.
Monday, April 14, 2014
ENT visit
We took Zadie to CHOP in Philly today for a visit with her ENT, Dr. Javia. After her bronchoscopy and sleep endoscopy in March, he said there was a possibility that the tonsils need to come out, since they were pretty large. This was pretty disappointing since she was just in the OR in September to have her adenoids removed. Apparently, at that time, the tonsils were so small that he didn't feel they needed to come out. Recovery from a tonsillectomy is much worse than from just an adenoidectomy, and I do appreciate that he only does what he feels is absolutely necessary.
However, now that Dr. Javia has confirmed that he feels she needs a tonsillectomy, I do wish he had just taken them out in September. Two birds, one stone? She's scheduled for the tonsillectomy for May 6, which is just over three weeks away. After that, we'll be able to schedule her for another sleep study to see if there is any improvement to the obstructive sleep apnea. Since her airway looked beautiful in the March scope, if the tonsils don't prove to be the problem, then hypotonia of the upper airway will be the likely culprit. There is no surgical repair for hypotonia, it is just something that Zadie will have to outgrow. Since there's no other reason for the trach right now besides the OSA, Dr. Javia said that decannulating (removing the trach) and putting her on a CPAP mask is a possibility. She would have to get used to the CPAP mask before decann, though. I'm not sure how she'll do with a mask on her face!
I hate to put Zadie through another surgery! I know it's for the best and she won't remember much (the older she gets, the less we can say "she won't remember any of this!") but it's just no fun. The older she gets, the worse things like surgery and hospitalizations and blood draws get. But she's a trouper and soon enough, this will be in her rearview mirror.
However, now that Dr. Javia has confirmed that he feels she needs a tonsillectomy, I do wish he had just taken them out in September. Two birds, one stone? She's scheduled for the tonsillectomy for May 6, which is just over three weeks away. After that, we'll be able to schedule her for another sleep study to see if there is any improvement to the obstructive sleep apnea. Since her airway looked beautiful in the March scope, if the tonsils don't prove to be the problem, then hypotonia of the upper airway will be the likely culprit. There is no surgical repair for hypotonia, it is just something that Zadie will have to outgrow. Since there's no other reason for the trach right now besides the OSA, Dr. Javia said that decannulating (removing the trach) and putting her on a CPAP mask is a possibility. She would have to get used to the CPAP mask before decann, though. I'm not sure how she'll do with a mask on her face!
I hate to put Zadie through another surgery! I know it's for the best and she won't remember much (the older she gets, the less we can say "she won't remember any of this!") but it's just no fun. The older she gets, the worse things like surgery and hospitalizations and blood draws get. But she's a trouper and soon enough, this will be in her rearview mirror.
Saturday, April 12, 2014
Lots of updates!
Zadie had her bronchoscopy/sleep endoscopy in March at CHOP. Dr. Javia said her airway looks great, with no obvious issues! This is good news, but also bad news in a way. At least if there was an obvious issue, there might be an explanation for her obstructive sleep apnea (OSA). But, as it is, there are no clear reasons. Dr. Javia did say that her tonsils were bigger than the last time he saw them (which was when he removed her adenoids.) That's the last possibility for a cause for her OSA, other than just a hypotonia of her airway, which is something that can't be surgically corrected, she'd just have to grow out of it. We are taking her to see him this coming week so he can look at her tonsils again and think about having them removed. We'll be pretty upset if she has to go under for another surgery, when he could have taken her tonsils out when he was in taking out her adenoids in September, but at the time, he didn't think it was necessary. Dr. Javia also said that there is the possibility of decannulating (removing the trach) and putting Zadie on CPAP. We are very interested in this possibility. I can't imagine it will be easy to get her to wear a mask on her face to bed, but I know other kids do it.
A couple of weeks after the CHOP visit, Zadie developed what looked like a pimple on her belly, right under her Gtube site. It got bigger and redder and I ended up taking her to the doctor. He took a swab of the pus inside and put her on antibiotics. It turned out to be a staph infection.
She ended up having a reaction to the antibiotic, Bactrim, so we stopped that, but her pediatrician felt that she'd been on it long enough and it was ok to stop.
Meanwhile, she was weighed when she went to the doctor for the staph infection, and she had gained weight since January, when she went to see the GI! Between the weight gain and the fact that the Gtube site was getting yucky (and, I imagine, contributed to the infection), we decided to pull out the tube. We waited until morning so that her stomach was empty, and just pulled it out. It was a very exciting day. I wasn't sure what we'd have to do to keep it from leaking, but it closed up very quickly, within a few hours, and we never had any leakage from her stomach. Since she had some granuloma (scar tissue) built up around the site, it's not looking the prettiest, but I'm hoping as she grows that the scar tissue will lessen and be less noticeable.
In other news, Zadie has had two evaluations with the child study team from the school district so far. One was with the speech pathologist and the other was with the learning consultant. From what I understand, she did very well in the evaluations, which is great, but it also means she most likely won't qualify for the district pre-school. It is pretty impressive that a kid who has had so many factors against her barely even has a speech delay. Both Pierre Robin Sequence and having a trach are major causes of speech delays and issues. But she is doing really well! I'm back to work at the daycare now and when her nurse went on vacation last week, I took her to work with me. Even though the class I have is a little younger than her, she wanted to stay with me and she did very well with the whole preschool/daycare thing. She loved wearing her backpack and having a lunch box and she loved playing on the playground with the other kids. One way or another, by the fall, I would like her in a preschool so that she gets out in the world! She'll be turning 3 next month, so her speech therapy with Early Intervention will end at that point.
She's currently obsessed with Frozen, just like every other little girl in the world. She's going to have breakfast with Elsa tomorrow morning, which should be a lot of fun!
I'll leave you with a picture of Zadie and her big brother and baby sister from a photo shoot we did about a month ago. Super cute!
A couple of weeks after the CHOP visit, Zadie developed what looked like a pimple on her belly, right under her Gtube site. It got bigger and redder and I ended up taking her to the doctor. He took a swab of the pus inside and put her on antibiotics. It turned out to be a staph infection.
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| Staph infection by Gtube |
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| Red cheeks - reaction to Bactrim |
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| Rash on chest that spread everywhere - reaction to Bactrim |
Meanwhile, she was weighed when she went to the doctor for the staph infection, and she had gained weight since January, when she went to see the GI! Between the weight gain and the fact that the Gtube site was getting yucky (and, I imagine, contributed to the infection), we decided to pull out the tube. We waited until morning so that her stomach was empty, and just pulled it out. It was a very exciting day. I wasn't sure what we'd have to do to keep it from leaking, but it closed up very quickly, within a few hours, and we never had any leakage from her stomach. Since she had some granuloma (scar tissue) built up around the site, it's not looking the prettiest, but I'm hoping as she grows that the scar tissue will lessen and be less noticeable.
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| One tube down, one to go! |
In other news, Zadie has had two evaluations with the child study team from the school district so far. One was with the speech pathologist and the other was with the learning consultant. From what I understand, she did very well in the evaluations, which is great, but it also means she most likely won't qualify for the district pre-school. It is pretty impressive that a kid who has had so many factors against her barely even has a speech delay. Both Pierre Robin Sequence and having a trach are major causes of speech delays and issues. But she is doing really well! I'm back to work at the daycare now and when her nurse went on vacation last week, I took her to work with me. Even though the class I have is a little younger than her, she wanted to stay with me and she did very well with the whole preschool/daycare thing. She loved wearing her backpack and having a lunch box and she loved playing on the playground with the other kids. One way or another, by the fall, I would like her in a preschool so that she gets out in the world! She'll be turning 3 next month, so her speech therapy with Early Intervention will end at that point.
She's currently obsessed with Frozen, just like every other little girl in the world. She's going to have breakfast with Elsa tomorrow morning, which should be a lot of fun!
I'll leave you with a picture of Zadie and her big brother and baby sister from a photo shoot we did about a month ago. Super cute!
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| Jonathan, Beatrix and Zadie |
Thursday, February 6, 2014
Early Intervention transition
It's hard to believe, but Zadie will be 3 years old in less than four months! Since Early Intervention only covers children until they're 3, we had the option of getting her evaluated to transition to the school system for preschool. We decided to see if she qualified. We had the initial meeting with the child study team for the school system last week, and they agreed to do a psychological, social, educational and speech evaluation on her.
We're not sure whether she will qualify, since she really is doing quite well, with speech being her only issue at this point, but her medical issues may help her get qualified.
In nursing coverage news, the insurance company approved Zadie's nursing hours until April, when they will be reviewed again. They usually approve in six month increments, so I'm not sure why it's a shorter period before another review. I do wonder if it has to do with the bronchoscopy she'll be having in March; they might be waiting to hear the results of that.
I had posted this on Facebook and haven't mentioned it here yet, but Zadie's GI doctor has discontinued her overnight feeds! She weighs over 30 pounds now, which is around the 50th percentile. This is amazing progress considering just over a year ago, she was in the 5th percentile for weight. We have to make sure that she at least maintains and ideally gains some weight in the next month or two. If she does, we have the option of completely removing her feeding tube! This is such exciting news! We will most likely keep the feeding tube for at least some time, since she still has the trach and will be having procedures and possibly surgeries in the future. The feeding tube is a very good thing to have at times. I'm really proud of how far she has come. When she was born, she couldn't even suck from a bottle, and there were several months where she took nothing by mouth. Just 2 years later, the fact that she's thriving without the aid of the feeding tube is really remarkable.
Zadie's current favorite word is NO and her current obsessions are turning lights on and off and closing doors!
We're not sure whether she will qualify, since she really is doing quite well, with speech being her only issue at this point, but her medical issues may help her get qualified.
In nursing coverage news, the insurance company approved Zadie's nursing hours until April, when they will be reviewed again. They usually approve in six month increments, so I'm not sure why it's a shorter period before another review. I do wonder if it has to do with the bronchoscopy she'll be having in March; they might be waiting to hear the results of that.
I had posted this on Facebook and haven't mentioned it here yet, but Zadie's GI doctor has discontinued her overnight feeds! She weighs over 30 pounds now, which is around the 50th percentile. This is amazing progress considering just over a year ago, she was in the 5th percentile for weight. We have to make sure that she at least maintains and ideally gains some weight in the next month or two. If she does, we have the option of completely removing her feeding tube! This is such exciting news! We will most likely keep the feeding tube for at least some time, since she still has the trach and will be having procedures and possibly surgeries in the future. The feeding tube is a very good thing to have at times. I'm really proud of how far she has come. When she was born, she couldn't even suck from a bottle, and there were several months where she took nothing by mouth. Just 2 years later, the fact that she's thriving without the aid of the feeding tube is really remarkable.
Zadie's current favorite word is NO and her current obsessions are turning lights on and off and closing doors!
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