Play song, "Believe" with this post
I will admit that even though this surgery had been over 3 years of waiting, and had to be rescheduled around 5 times!! No kidding, Em would get sick within just a few days EVERY time, and most of the time end up in the hospital as well! It was always a little ironic when the surgery line would show up on my cell phone and I'd have to tell them we were already at the hospital (sometimes the PICU) with a very sick little girl :/ frustrating!
I will admit that even though this surgery had been over 3 years of waiting, and had to be rescheduled around 5 times!! No kidding, Em would get sick within just a few days EVERY time, and most of the time end up in the hospital as well! It was always a little ironic when the surgery line would show up on my cell phone and I'd have to tell them we were already at the hospital (sometimes the PICU) with a very sick little girl :/ frustrating!
But, I was scared out of my mind for this (quietly though). And no, it wasn't because it was the number 13. In fact, that thought hadn't even occurred to me until a few days before.... no, I was terrified because of what happened last time (number 12). And this no less was an operation in the same area, and actually more elaborate than a TNA (adenoid and tonsillectomy). I did not sleep at all the night before, which really wasn't good considering we had to leave our house around 5 am to ensure we'd be on time for our 6:45 check-in time. I think Emarie must have somehow sensed that I was scared, because she was the last thing from it! She was so happy and acting so excited, it was really so funny that I completely forgot how scared I was! So, thanks honey!
Early check-in times usually mean for a busy waiting room! Nowhere to even sit, which is why Em and I are on the floor :S
Hugs for baby (this is the doll I got her during #12)
Long wait, so we did a lot to keep busy! Em liked driving the car (hint, hint for Santa ;)
Like I said, she was so happy and excited! Silly girl!
Hugs
I'm ready!
Even was happy and laughing while getting her Sats taken.... bubbles probably helped though ;)
Picture with daddy before we head out
And can't forget the anesthesiologist picture (she was great too, and one we haven't had before)
What was done this time:
First procedure was a little bit of dental work- I had taken Em to the dental clinic at Primary a couple months ago, and was relieved to find out that her teeth are actually in good shape, they just needed a deep cleaning to get rid of the calcium build up, and possibly polish up a few spots. This would need to be done under anesthesia, and I was asked if she had anything coming up that they could crash-in on? I always laugh when they ask that ;) So it didn't work out to bump with number 12 (the TNA), probably a good thing though. So we settled on the hard palate (number 13), which was a bit tricky since we were already squeezing in an EGD (esophagus and upper digestive tract scope), (her GI doc had been wanting to do this, well and us too really, after so many incidences of vomiting blood). But it was all managed in. Dental work was a success and took about 45 minutes. Em's teeth look sparkly and brand new :)
Second procedure was the EGD- As already mentioned, we had to get this done from all the vomiting of blood occurences (you can read about those here, and here). Actually we had seen Dr. Ogorman (Em's gastroenterologist) during the February stay and we had decided on it together. Most of what she saw looked good and normal, other than a few spots of irritation (note pictures below), but still nothing that she could see that would have explained all her problems before. Her theories though, include that she may have had some ulcers or fissures that have resolved themselves by now, and I hope that's the case! But we haven't had any more unexplained vomiting of blood since the February hospital stay, so we're confidant that that may be right *knock on wood. But, she did decide to up Emarie's dose of Zantac and then keep her on the Prevacid and add Pepsid to the mix (CrAzY, I know!). But all in all, we were relieved with this as well.
Picture of the irratated areas they found in her stomach and upper intestine (click on to see full-size if you so dare ;)
Third and final procedure was the hard palate repair- Most of you know that Emarie was born with a cleft. One of the worst they'd seen at our cranio-facial clinic here. We had no knowledge of it though until the day she was born and that's probably because it didn't extend to her lip. We consider our family very lucky, that with as significant as it was (actual words from her plastic surgeon were, "it's the widest cleft I've ever seen!" Which is saying something since he travels all over the world for The Smile Project), that she didn't have more problems from it other than just not being able to eat well (which is easily fixed by a feeding tube;). What I mean, is we were told there was a possibility she would be missing teeth or have none at all on the top. She has all of her teeth and even her speech is considered very mild all things considered. But still it was a LOOONG process to fix (note pictures below). To give you an idea, this was her 13th surgery, and more than half of those have been directly for her cleft (I believe it's 7 to be exact). She still may have to have more in the future, but this is it, for at least awhile, and you have no idea how happy we are about that! This procedure as well went very well :) We had been told that there may have been a possibility to need a graft, but it wasn't necessary. The only hitch was that he did have to leave a little bit of tissue exposed, but really the only problem this caused was a bit more oozing of blood for a few days.
Here's a few time-lined pictures of Emarie's cleft:
Before she had any work on it
The above is when she was 2 months old and probably the best picture of it. She then had an NG tube (roughly translated is a nasal to gastro tube), so you can see it in her nasal passage, which gives you an idea of the sheer size of her cleft
This picture is when she was 3 months and I know it's a little "off", but it was pretty tricky to get her to smile with the camera on her, so usually you'd have to hold it a ways away so she could see your face, and it didn't always work out ;) But I liked how this one was a little more straight on.
After the first procedure, which was the placement of a prosthesis
3 and 1/2 months here still in the hospital (this was one of her longest hospital stays following a surgery, about 13 days, she'd also had her g-tube placement at this time), and I know it doesn't show it the best... but you get the idea (she had multiple exchanges of the prostheses)
At a year old, she had her soft palate repair (right before Christmas), and then a smaller prosthesis put in to cover the rest of the hard palate
She was very swollen after this one, much more so than the hard palate, which is really hard to believe!
And here's a few shots of the smaller prosthesis (these are great by the way!)
These were taken in a Vegas hotel while we were there for the '09 annual Chromosome 18 Conference (these were during the "Mom's Night Out", so it was just daddy and Em and as you can see, they had a blast!)
And the best I could do after she had her prosthesis removed in preparation (BTW, this happened all the way back in December, and standard is to do the hard palate 3 weeks after so the tissue can harden up.... so yeah, like I said, it got rescheduled a lot!)
Having this quarter sized hole exposed for so long is not the best idea.... probably why she got sick way more than usual!
And here's how she looks after the hard palate surgery (at least the best picture we could get!) We plan on doing a recovery one when everything is healed up nicely, probably when we go to follow-up in about 2 weeks
P.S. You can click on both of these to see them full-size, so you can see her mouth better
And this one was after she was a little more cleaned up as we were right about to go home!
And here's the rest of the post-op and stay
She went straight to the PICU after everything was done and Dr. Saddiqi told us we could wait in the PICU waiting room, but we'd learned our lesson from the last time (where we were forgotten about), so we stayed put in the surgery waiting area, and were able to see her about 40 minutes after we talked to Dr. Saddiqi (her plastic surgeon).
She wasn't too happy when we first got there, but after 2 doses of Morhpine and being in daddy's arms, she was almost as good as new....
(I love this picture, you are such a perfect daddy Steve, Em and I love you!)
Toy Story made it even better!
We really could have our own wing at the hospital. Emarie has averaged around 4 or 5 surgeries a year since she was born... which as you know is a grand total of 13 now. And that's not even counting the unplanned hospital stays (which is at least 10+). So, it's really no surprise that we are known and recognized by the staff. But, still this time was a little sad that we're now known in the PICU..... nurses, residents, and head's of departments/units. Well, and let's not even mention the cute little ladies in the surgery waiting area that always have a comment like, "hey, it's been awhile since we've seen you! At least a couple of months!" But, hopefully soon, no one will remember us anymore ;)
A few more pictures of the stay
Here's another close-up of her mouth on the first day... this was really to show the stitch they used to hold her tongue down (it came out the next morning)
First smiles on the first day, listening to music (using that speaker to the right which was one of Steve's Father's Day gifts)
This was during the transfer to the floor from the PICU. She just had to hold all of her movies. As if she thought we'd forget them or something!
Yelling at the mean bear "Lotso" in Toy Story 3 (and yeah, there's some of that oozing that was mentioned earlier)
Happy to go home! Dr. Saddiqi had come in to evaluate her the next day and was utterly amazed with how well she was doing! So much so, that he told us we could choose to go home that night or stay one more day.... we're not stupid, we'd rather be home! So we left that night (which was the night after the surgery) at 7 pm. This was quite miraculous considering even typical kids need at least 2-3 days!
So I can safely say that after this, Emarie will have one more surgery that we know of (yes, that other hip surgery I was told was necessary). But, after that, well.... I'm still afraid to say it out loud.... but we should be done.... or at least done for awhile. Now, can I get an amen here?
Saying goodbye to Primary once again!
And Steve is holding the gift that Em made him in the hospital (I guess that's one of the perks of being there on Father's Day weekend)
And as for Father's Day, we celebrated early since we thought we'd be in the hospital.... so that will come on the next post and I promise it will be short since this one was SOo long!
But just one more thing! I mentioned on Facebook that Em is so loud now and talking SOo much because she just loves the sound of her "new" voice! Seriously, she was saying things we'd never heard her say before! Actual phrases, and easy to understand! Amazing right?!
So here's a short video, not the best since once she saw me she didn't do very much, but we're still trying to get a better one!
What was done this time:
First procedure was a little bit of dental work- I had taken Em to the dental clinic at Primary a couple months ago, and was relieved to find out that her teeth are actually in good shape, they just needed a deep cleaning to get rid of the calcium build up, and possibly polish up a few spots. This would need to be done under anesthesia, and I was asked if she had anything coming up that they could crash-in on? I always laugh when they ask that ;) So it didn't work out to bump with number 12 (the TNA), probably a good thing though. So we settled on the hard palate (number 13), which was a bit tricky since we were already squeezing in an EGD (esophagus and upper digestive tract scope), (her GI doc had been wanting to do this, well and us too really, after so many incidences of vomiting blood). But it was all managed in. Dental work was a success and took about 45 minutes. Em's teeth look sparkly and brand new :)
Second procedure was the EGD- As already mentioned, we had to get this done from all the vomiting of blood occurences (you can read about those here, and here). Actually we had seen Dr. Ogorman (Em's gastroenterologist) during the February stay and we had decided on it together. Most of what she saw looked good and normal, other than a few spots of irritation (note pictures below), but still nothing that she could see that would have explained all her problems before. Her theories though, include that she may have had some ulcers or fissures that have resolved themselves by now, and I hope that's the case! But we haven't had any more unexplained vomiting of blood since the February hospital stay, so we're confidant that that may be right *knock on wood. But, she did decide to up Emarie's dose of Zantac and then keep her on the Prevacid and add Pepsid to the mix (CrAzY, I know!). But all in all, we were relieved with this as well.
Third and final procedure was the hard palate repair- Most of you know that Emarie was born with a cleft. One of the worst they'd seen at our cranio-facial clinic here. We had no knowledge of it though until the day she was born and that's probably because it didn't extend to her lip. We consider our family very lucky, that with as significant as it was (actual words from her plastic surgeon were, "it's the widest cleft I've ever seen!" Which is saying something since he travels all over the world for The Smile Project), that she didn't have more problems from it other than just not being able to eat well (which is easily fixed by a feeding tube;). What I mean, is we were told there was a possibility she would be missing teeth or have none at all on the top. She has all of her teeth and even her speech is considered very mild all things considered. But still it was a LOOONG process to fix (note pictures below). To give you an idea, this was her 13th surgery, and more than half of those have been directly for her cleft (I believe it's 7 to be exact). She still may have to have more in the future, but this is it, for at least awhile, and you have no idea how happy we are about that! This procedure as well went very well :) We had been told that there may have been a possibility to need a graft, but it wasn't necessary. The only hitch was that he did have to leave a little bit of tissue exposed, but really the only problem this caused was a bit more oozing of blood for a few days.
Here's a few time-lined pictures of Emarie's cleft:
Before she had any work on it
After the first procedure, which was the placement of a prosthesis
At a year old, she had her soft palate repair (right before Christmas), and then a smaller prosthesis put in to cover the rest of the hard palate
And here's a few shots of the smaller prosthesis (these are great by the way!)
And the best I could do after she had her prosthesis removed in preparation (BTW, this happened all the way back in December, and standard is to do the hard palate 3 weeks after so the tissue can harden up.... so yeah, like I said, it got rescheduled a lot!)
And here's how she looks after the hard palate surgery (at least the best picture we could get!) We plan on doing a recovery one when everything is healed up nicely, probably when we go to follow-up in about 2 weeks
And here's the rest of the post-op and stay
She went straight to the PICU after everything was done and Dr. Saddiqi told us we could wait in the PICU waiting room, but we'd learned our lesson from the last time (where we were forgotten about), so we stayed put in the surgery waiting area, and were able to see her about 40 minutes after we talked to Dr. Saddiqi (her plastic surgeon).
We really could have our own wing at the hospital. Emarie has averaged around 4 or 5 surgeries a year since she was born... which as you know is a grand total of 13 now. And that's not even counting the unplanned hospital stays (which is at least 10+). So, it's really no surprise that we are known and recognized by the staff. But, still this time was a little sad that we're now known in the PICU..... nurses, residents, and head's of departments/units. Well, and let's not even mention the cute little ladies in the surgery waiting area that always have a comment like, "hey, it's been awhile since we've seen you! At least a couple of months!" But, hopefully soon, no one will remember us anymore ;)
A few more pictures of the stay
So I can safely say that after this, Emarie will have one more surgery that we know of (yes, that other hip surgery I was told was necessary). But, after that, well.... I'm still afraid to say it out loud.... but we should be done.... or at least done for awhile. Now, can I get an amen here?
And as for Father's Day, we celebrated early since we thought we'd be in the hospital.... so that will come on the next post and I promise it will be short since this one was SOo long!
But just one more thing! I mentioned on Facebook that Em is so loud now and talking SOo much because she just loves the sound of her "new" voice! Seriously, she was saying things we'd never heard her say before! Actual phrases, and easy to understand! Amazing right?!
So here's a short video, not the best since once she saw me she didn't do very much, but we're still trying to get a better one!
*of course it's too big for dumb blogger rules! And because of settings, I can't just post it from Youtube here... and I'm too far along to embed from Youtube and start all over :P (some of you may understand this, but if you don't, just don't worry!)
Here's the link for it on Youtube, click here
(She's saying "I love it" about Toy Story and then "mamma". Also, I apologize for the state of her hair, she wouldn't let me do anything with it!)
3 comments:
I can't believe how big she is getting! I want to come down and see her! I also can't believe she has been through 13 surgeries... she is one tough girl, that's for sure.
She is a tough little girl and I love her video!
AMEN!! I am dreading Ethan's next surgery, I just have a pit in my stomach even thinking about it, and we don't even have an OK or a date yet.....
Love the video and her voice!!
Post a Comment