The Nitty-Gritty of Our Hard Summer

*warning, long post ahead*

So.... if you're on Facebook or read the last few posts, you can probably gather that we've had a lot going on this summer. I mentioned in this post that Em would be facing a rather hard summer.... and the reason for that was after a follow-up from her latest sleep study (her daddy went with her for the first time and they had fun, as you can see)

But the follow-up was rather grim, the results were terrible and some of the worst apnea he'd seen, and this was after a floppy voice box repair done last October. This was after a sleep endoscopy that was performed last August and they were sure the floppy voice box repair would fix her problems and prolong their need to do a facial reconstruction (you can read more about that here). 

So a sedated MRI was scheduled, and re-scheduled..... and then rescheduled two more times! This was after a cold and then croup, and forgetfulness. So it didn't happen until August, when initially it was supposed to happen in June.

Around this same time we also were dreading another procedure. Remember how it was mentioned that since Ryker came, Em had been pulling her tube out a lot??..... well, we decided to do something about that, and talked with Dr. O'Gorman about some non balloon port tubes (the mickey button that Em has uses a balloon to keep it in place.... so once it is inserted into her belly, you use a syringe of water and place it in the port to fill the balloon up). There is benefits and downsides to both kinds of buttons, so we researched a lot, and decided that a non balloon was worth a shot. The biggest thing with the non balloons, is they are really hard to pull out accidentally, but if they do come out, it is a lot more painful, and they can only be replaced at the hospital (the balloon ones we can replace ourselves, and they are not without pain to come out or put in, but from the sounds of it, the non balloons are a lot more painful, but again, harder to come out). So Em had a non balloon placed back in April, and for the first day or so, it worked great! But not so much after that, and it began leaking like crazy. And I'm talking really leaking, like she wasn't getting any food at all, and was going through around 10 outfit changes a day! She had never had a problem with leaking, so I called them of course, by this point it was the weekend, so I had to call the hospital and get the on-call gastro. He said since they had to go up in size, she was probably just a bit stretched out and it would take awhile for her to close-off again and not to worry. But when I told him her skin looked terrible, he said maybe we should get in to see the wound team at Primary. So that is what we did, and luckily they squeezed us in that week. Their thought was that the button was too long. They had used the same length as her Mickey had been, but since there is not a balloon to pull it tight up against the stomach (it had a flat disc to keep it in), it was too long. Unfortunately we were already having issues with the insurance covering more buttons because Em had gone through so many mickeys when they were getting pulled out so often (insurance only covers 4 a year, and by April we had already gone well over that), so they didn't think the insurance would cover a change so quickly.... even though, the blame should be on the Dr for putting the wrong size in in the first place! So they gave us some thicker pads to try and get it more taught, and of course many, many creams! But this is when it was first noticed..... a dark spot right near her stoma that they were unsure as to what it was. They wanted us to see her dermatologist about that, and they worked their magic to get her in the next week (Dr. Vanderhooft usually has a 4-6 month waiting list!).... so of course that worried me a little. Things really went south though before we even made it to the next week! So Sunday we headed for the ER..... our reason for this, is that we believe Em had had very little food or drink for 2 weeks at this point, and this is what her stomach looked like

Yeah, I was worried she was getting cellulitis. At the Primary ER, they could all agree on one thing, that button needed to come out.... we had not been able to keep from leaking at all. They couldn't do it then and there though, because they knew it would need to be done under anesthesia, and they neither had a surgeon that could do it, nor an anesthesiologist that felt comfortable with Em's airway. So they made room for her on Monday's schedule at 6 am, and she finally got that sucker out! 

It was easy to see right away what the problem had been, the thing was broken!!! INSIDE her stomach! So not only did they have to take out what they could from the outside.... they also had to go in and remove the fragments from the inside! That dang thing was probably broken from the moment they put it in.... because how it works is, they put it in and then use a tool to crank open the disc, and it probably got broken as they were cranking it.... I felt so bad for my little girl :( 

But things got much better after she went back to a balloon port, and we decided that we would just do our best to keep it in from now on. So we got to the dermatologist later that week and found out that Em had a staph infection in her skin, so they put her on antibiotics for that.... but still the best dermatologist at primary didn't know what to make of that dark spot either, so she thought it would be best for us to see a surgeon and get it surgically removed and biopsied..... yup, panicking at this point! I made no hesitation in making an immediate appointment with Dr. Downey (this is the surgeon that first put Emarie's g-tube in when she was 3 months old). They were able to fit us right in because apparently they had already received a fax from Dr. Vanderhooft.... great :/ And at that appointment, the C word was used..... I could hardly believe my ears..... Cancer? Really? Could this girl possibly have that when she deals with so much else?? I was downright angry! This was most certainly not fair!! He said he wanted to remove and biopsy it as soon as he possibly could..... he could do it the next day at Utah Valley..... too bad that was no go! There is not an anesthesiologist that will touch her outside of Primary. So he asked his nurse when the next time he would be at Primary would be, and it was the following week, but she said they were full.... he looked at the schedule and said, "bump him, this is more important to get done."...... WTH??! You can imagine how this is all making me feel like everything is collapsing around me and I can't breath or focus on anything..... the world stopped spinning, everything disappeared.... all I could see.... hear.... feel.... was my baby might have cancer. 

And of course this happened smack dab at the same time that she got croup and whatever else! So that awful procedure had to be rescheduled again and again as well.... but we finally faced it in July, and then let the facebook community know what was going on with this post:

Sorry for the picture overload, but we had a hard time choosing (and you can probably see why!). Our cute little "Super Girl" would truly appreciate your thoughts and prayers this week as she has some big deciding procedures (one on Wednesday and the other on Friday). I have hesitated to say what these are before now because it increases my stress over it.... but on Wednesday this sweet girl will undergo her 20th surgery for suspicions of cancer, please I am asking to not be bombarded with questions on this now, since I am already freaking out. The procedure on Friday will be a sedated MRI to see if she is going to need that dreaded facial reconstruction much sooner in her future than was previously anticipated. We really would like a good outcome from both of these procedures as you can imagine, thanks in advance my wonderful friends and family

So the sedated MRI didn't end up happening that week because we forgot to turn off her feeding at midnight.... out of well over 21 anesthetic procedures, that is the first time we've ever done that.... so although I was really frustrated, mostly because of the previous procedure though.... I had to hand it to myself, that that is not bad! So she had the MRI in August.... and sorry I know this is getting really long, but bear with me! 

Here are some pictures from the biopsy, and yes she wore her super hero cape into the OR! 

And well it took over two weeks, but we finally got the results that amazingly (even with 95% assurity that the results would be malignant) the mass was benign!!!!! So that was one hurdle! 

This was the very spot and moment where we received the news! And doesn't Ry just look too cool for school in this picture! 

After her MRI. She usually has a hard time waking after these types of procedures because they use an anesthesia that induces a more natural sleep. 

But fast-forward to August when she had her MRI, then a couple weeks later, her follow-up, where come to find out, they would like to try another tongue reduction and they think this could offset the need for a facial reconstruction for a few years *big sigh of relief*...... until I get a very detailed (with pictures) description of what a real tongue reduction is, and it sounds horrible. It is a very tricky and potentially dangerous procedure, with a significant chance it might not even help. She will have to be intubated, spend a few days in the PICU, and have a possibility of up to 2 weeks total in the hospital, but knowing my little girl, it could even be longer. All this coupled with the fact it might not even do what they are hoping it will..... well you could imagine my hesitancy, but I went ahead and set a (tentative in my mind) date for October, cried the whole way home and then got my big girl pants on and set straight to work when we got home. I researched and couldn't find much, so then I did the next best thing (actually probably the best thing and what I should've done first) and consulted the true experts.... the parents..... the special needs parents to be more specific. So I posted on the Ch18 FB page and two other general special needs parenting pages. No one had ever heard of this procedure, but all agreed it sounded scary, and there seemed to be a consensus that I should seek another opinion (which I was already planning), but thankfully the Utah Kids page was able to give me a few options of doctors that we could get a second opinion from. I also asked Em's (and Ry's) wonderful pediatrician at Ry's 9 month appointment and he too recommended a doctor that a lot of other parents had recommended. So I made an appointment and luckily they were able to squeeze us in October 5th, a mere 3 days before the suspected surgery date.

Sadly, the world collapsed again a few days later when I got a call from Dr. Muntz's surgery scheduler saying that they could not get the pre-authorization from the insurance because she was told our insurance had terminated. *Panic* "That has to be a mistake" I tell her..... though I'm sure she can hear in my voice that I'm not so sure, but I told her I would check on it and give her a call back. But my worry was completely confirmed when I went to the pharmacy later that day to try and pick up Em's vital Singulair and was told the same thing by the pharmacist.... we no longer had insurance. And this is the point that I had a very public panic attack/meltdown and had to leave without getting that precious medication. And the next day is when the letter finally came saying that our coverage actually ended at the end of July, which means all those procedures that happened in August were not actually covered :/ You can probably gather why this may be a big deal, but one little thing is Em can certainly wrack up nearly $10,000 in medical expenses monthly between her medical formula, her feeding tube supplies, her medications and therapy and clinical visits that happen on a monthly basis. And this is a good month, that doesn't include sickness, or surgeries, or hospital stays that come with both of those often. So we cannot be without insurance, but what do we do? There's Medicaid, which we have been denied for at least 3 other times, but it's pretty much the only hope we've got. So I have been working like crazy to get that process going yet again, but still have a lot more to do, and it can take awhile to get approval, even though it will retroact to when our insurance ended at the end of July. Thankfully because the amazing friends (really family) and network we have, we will be taken care of as far as formula and supplies go for a bit.... did I mention how much I love the Utah Kids group?? As well as certain Ch18 family that have come to our aid as well. Aside from the Singulair, thankfully I had refilled a lot of 3 month supplies of Em's medications before this all happened, so we should be ok there for a bit too.

I won't think about what will happen if we don't get approved for Medicaid, hopefully CHIP will be the backup, and the only backup we'll need. We cannot get on private insurance because all of us (save for Ryker) have pre-existing conditions. Our only options before were group plans. Sadly Steve's work had to stop offering insurance in 2010 (thanks mostly to us most likely, because after Em was born, United Healthcare raised the companies premiums 25% each period, and there came a point where the company could no longer afford it for everyone), but they pay into his salary what they would've put toward insurance. So when our coverage ended through Steve's work, we had to go with my work's group plan, and since I wasn't a contracted employee, we had to pay the full premium, which wasn't cheap (but $1,500 is better than $10,000!), so that is what we've been doing since then, and one of the major reasons we were forced to sell our home and be renters/squatters since then ;) But of course I quit my job with the school back in November when our sweet little Ryker was born, so we knew our coverage would eventually have to end, we just thought we still had time.... stupid, I know!

But we have had so many people offer to help us in this crisis mode! I have learned some good connections thanks to more advice from the wonderful parents in the Utah Kids group (very lucky to have found that group!). I am also in contact with someone to get Em on the DSPD wait-list.... sadly all of these programs that are offered are so hard for the people that really need them to get them. I had a caseworker help me with the paperwork for Medicaid, which I remember was a nightmare the last few times I've done it, and I don't know how people are able to get it so easy when they make it nearly impossible to apply! If it weren't for this caseworker's help, I am sure it would have not gotten done as quickly, nor as efficiently. She has also taken sympathy on our situation and thinks we have a real shot, so keeps us in your thoughts and prayers if you so wish.

After all that, I'm sure you'll be surprised to know that the summer hasn't been all bad! We've been swimming, and jumping on the tramp, and playing, and vacationing in Park City (still hoping to get a post done about that, but again, don't hold your breath!).

Playing in the backyard with the cheapo pirate pool I got for $6

And then we decided to get a "real" pool when we saw pictures of our friends The Wolfs in a pool like this, I knew Em had to have one! We got it from Amazon BTW.

And this is when we went to Cowabunga Bay for their "Autism Night". They rented out the whole park and all special needs families were invited to come, it was only $5 a person, and that included admission to the park and dinner, as well as other goodies they were giving out to everyone. Too bad it started to storm right at the time we were going, and it was a bit cold! But thankfully the water was warm and the kids didn't seem to mind too much! Both of them went down some big slides with mommy and daddy's help :) 

And then there was this amazing thing, where we got to share our miracle girl with the world! Thanks to the help of Joanna Rudnick, Kartemquin films, Rick Guidotti and NBC's Rock Center. This was amazing! Click the picture below to be taken to the article and clip of the profile they did on the amazing Rick, that features a very cute, 18 month old Em! 

So that was our summer in a nut shell, and also I have started a new job that I can work from home :) I am working on the customer assistance team for the car dealership Ken Garff as a call grader. I listen in to the recorded calls and grade the ones that are sales related, and determine other things for the ones that are not sales related. Basically my job is to make sure the customers that call in are well taken care of. I have to send a lot of emails out to others in the dealership, and listen to a lot of funny things! Just a fair warning, when you hear that familiar saying that, "This call may be monitored for quality control purposes.".... just know that the entire call is recorded.... when you're talking with the person, when you're holding and even before the call is even answered! And someone IS listening and just might have grounds to laugh at you ;) 

Emarie's Preschool Graduation

After 3 years of preschool, my sweet girl finally graduated. It was a bittersweet day and I was flooded with emotions, not just because my little girl is growing up, but also I was thinking a lot about all the things she would be facing this summer.... I couldn't help but feel a twinge of jealousy as I heard other parents talk of plans of vacations, trips to the water and amusement parks, camping and other fun summer activities. And thanks to this missing DNA of Em's we are facing a lot of horrors this summer. I will probably finally get into all that in a coming post. 

So Em and her cute little class performed a couple of songs, and then they were each presented with a graduation cap and certificate. Mommy bought her a special graduation balloon and lei that I surprised her with when I came. Daddy was able to come too and Em was over the moon about that!

Here's some pictures of the day

 Singing songs

 Walking back after songs and then walking back after getting her "diploma" and cap

 All her family that was there that day

Her teachers, top L, Miss Molly, Top R, Miss Kelly and Bottom, Miss Brenda

She had a great year and accomplished more in her last year of preschool than the entire 2 years before that! 

Here's just a fun little picture I put together to show her first year of preschool at 3 years old, to her last year of preschool at 5 years.

Sadly this is the day Em started to head south with her health and got sicker than I believe she has ever been in her life (which is really saying something!), which caused her to miss the very last day of school, and put her in the ER later that week where we would find out she had croup, which also made it so we had to reschedule her two vital procedures (part of the horror of the summer we are looking at).  It took her quite awhile, but she is finally getting back to herself and we now have the procedures rescheduled for the middle of July. 

#16 and WOW, Some Good News for Once!

So little miss Emarie had her 16th surgery yesterday. Pretty minor one in our books- just a little ear opening (have to widen her tiny canals each time they put new tubes in), new tubes and a sleep endoscopy. This was all after the dreaded news in this post and the sleep study in this post. 

My brave girl showing no fear as usual in the waiting room

After vitals, dressed and ready to go... still no fear! 

Then came a long wait.... she was supposed to go back by 10:30 and she didn't until close to 12! Which wouldn't have been so bad if I didn't need to get home and clean! We had people coming to look at our apartment that evening and since I'd been having contractions and feeling crumby pretty much since we got back from the trip, I hadn't gotten much done to say the least!  But finally the anesthesiologist came to get my girl.... 

I think maybe she's getting a bit big for them to carry.... 

After that, I quickly got checked in in the waiting area, I ran downstairs to grab something for me and baby boy since it was already lunch time (thought we'd be home in time for lunch!). Then hurried back up since they expected her surgery to take between 45 minutes to an hour. I still wasn't even finished eating when Dr. Muntz came in to say that he'd finished. Everything went well and he was actually surprised by the endoscopy results..... He had my full attention here! Turns out that where he originally thought her obstructions were, mainly her underdeveloped upper jaw and nasal area..... Not it though! And he told me he was a little worried when it all looked good there, that maybe he'd been wrong and that her apnea is in fact central.... I got a little worried here!... But he kept going and then he found her problem, a "floppy voice box" coupled with an "enlarged tongue"..... bottom line is a MUCH, MUCH easier and less invasive fix than a facial reconstruction, but yes she'll still need surgery. But not nearly as bad! Still will need to be admitted afterward, possibly even to the PICU for a bit because it's treated much like a tonsil and adenoid removal.... and well, that didn't go so well for her :/

But all in all a much better outcome that what we were expecting! My first thought when I was told about a facial reconstruction was that I did not want my beautiful girl's face to change..... the face that I've known for well over four years, the face that I kiss endlessly and look at and wonder how she got to be so beautiful. Maybe this is silly, but the fact remained that her tiny nose and small jaw are very much a part of that face that I love, and I was really sad that they were going to change. Now I don't have to worry about that. She will always be my Em of course... but I love her just the way she is! It truly is a miracle that they did not find the obstruction in her palate! Prayers work, hope and faith are real! Especially with our kid who always seems to find her way into the smallest percentages and the most unlikely scenarios.... needing 2 varus osteotomies is proof of that! 

Now after Dr. Muntz left it had been kind of awhile and no one had called me back still to go see her in PACU. And just when I was about to get worried, there was a phone call..... a phone call? It was the nurse in PACU, who said Em was doing just fine SAT-wise, she just was not waking up, so it would still be a bit before they called me. So I decided to get her something for when she woke up, and no I wasn't worried. The anesthesiologist had warned that they were going to use a different method to get her to sleep because of the endoscopy, a method that induced more of a natural sleep and therefor was a little harder to wake from. 

Cute little doll and butterfly balloon from the gift shop

Finally they called me to go back and turns out she was already in recovery when I got back there! Still not quite alert, so she wasn't quite as excited about her presents as I thought she'd be...

And this was pretty much how she was the rest of the time we spent in recovery..... and the hour ride home! But once we were home, she was back to her usual Em self! During said car ride, Dr. Muntz's scheduler called me to set up the next surgery, so we're set for October 3rd. And while we had people looking at our apartment, we went to dinner at Cafe Rio with daddy

And she laughed the whole time we were there! We were celebrating the good news from the surgery and the fact that she had lost one marble at this point.... she lost the other later that night as already mentioned in the last post. 

Who Needs a Gallbladder Anyway?! *Squeamish BEWARE!

As most of you know, I recently had my gallbladder removed, 3 days ago to be exact. I have had ongoing problems with my gallbladder for 3+ years. The doctor I dealt with before though did not think it necessary to remove since I didn't have the presence of stones..... however the doctor that took it out said it showed years of disease and should have been taken out a long time ago. I also did have stones this time, thanks to baby boy probably. 

My first attack during the pregnancy was probably around 13 or 14 weeks, though I wasn't sure that's what it was then, I am now. I went to the ER for one that lasted a good 2 days when I was 16 weeks, and there is where they referred me again to a surgeon. The surgeon was pretty sure it would need to come out one way or another.... either now in my second trimester, or right after the baby is born.... like we're talking a week after *doesn't give me much time to recover from birth, would it?!* I was fine to wait since I really didn't want to do anything to jeopardize this rare pregnancy of mine. However, after talking to my OB, she was pretty sure she wanted me to get it out now. She thought it would only get worse, and that the attacks would come more frequently and be worse than they already were (and they were already pretty bad), they cannot remove it in the third trimester. She made me promise that I would reconsider getting it taken out if I had another attack. That didn't take long... the very next Friday I had an attack that lasted well through the weekend. Even though I had been very careful with what I was eating (low fat diet). When I called the surgeons office, they were fine to take it out right away.... the very next day actually. 

Originally they gave me a check-in time of 12:30, which I thought would be hard with fasting from midnight. But that morning they called a little before 7 am and said they'd had some cancellations and asked if I could be there at 8.... and we took it! 

They did some bloodwork and such first, and it was probably about 10 before they wheeled me back to the OR. I was grateful that Steve was able to be off work and be with me. The time it said on the clock when I finally opened my eyes was about 11:45. 

Before the surgery, it had been decided that when I was out of recovery they wanted me to be monitored in Labor & Delivery for a few hours afterward. So at about 12:30, we met Steve in the hallway and headed up the elevator to L&D. I wasn't really aware of any pain at first, probably because I was still groggy and numb from the anesthesia, so I declined anything for pain, especially through an IV at that point. They wanted to make sure that I could eat something and keep it down... liquids only though, so the nurse brought in a menu. I decided on some chicken broth and an orange italian ice, which was really good. She had brought in some crackers and Sprite before then, which were hard to eat with how dried out my mouth was. So I guzzled two sprites and then two waters. And by then my food was there. Halfway through eating I vomited, so I waited a little while before trying again. They also wanted me to be able to go to the bathroom on my own, otherwise they'd have to place a catheter and I would have to stay the night. First 3 attempts were unsuccessful, but I still had time before they wanted me to go home anyway (they wanted me there for at least 4 hours). It was at this point that I finally accepted Steve's offer to see "the pictures".

Now here's the squeamish part.... sorry! 

First off, here's what a healthy gallbladder should look like

And this was mine....

Anyone still want to debate whether I should have had this organ out?!..... No?? Didn't think so! 

So after I was finally able to relieve my bladder and keep some liquids down, they said I was good to go home, exactly at 4 pm. Steve and I stopped at Article Circle on the way home to get me a chocolate malt, and right before we pulled in, I had to use the sick back I had in my lap.... but I still wanted the shake ;) At home, went to sleep for awhile and Steve went to get Emarie from his parent's house and get my prescriptions filled. I admit I broke down and have taken a few of the Loritab that they prescribed, but they told me I could take 2 every four hours, and I've only been doing about 1 every six... and that's only if the pain is really bad. I'd say I've only had one in the last 48 hours, and it was yesterday morning. 

So I have a total of 4 incisions. The only one that really bothers me is the one on my belly button... the one where my uterus and baby boy are. At least I've been able to ice it for 20 minutes at a time. And found out today that I will finally be able to soak in these amazing jacuzzis  that are all around on Tuesday at the resort we've been staying at since Friday night (yes I came up the very day after my surgery, recover at home, or recover in luxury.... what would you choose?). And yeah, the reason I didn't know when I'd be able to get my incisions wet is because I never got any discharge instructions from the surgery, only L&D.... odd I know! So I have called the hospital a few times, but today I actually needed to go in to the Park City instacare since I was pretty sure I had a UTI.... lovely! And I was right. So I started on antibiotic and took advantage of being able to ask the dr there about certain things. Common sense told me that I shouldn't be getting them wet... just didn't know for how long. And I'd already been told I can't be lifting anything over 20 lbs for about a month.... yup, sorry Em! So far we've had enough help that I have been fine... only thing I worry about is when we get home from San Antonio and Steve goes back to work... but I'm sure we'll manage. 

So there you have it. Finally the swelling has begun to go down. Seriously looked like I was more like 8 months pregnant on Friday (which was the day after)

Yikes!! 

And here's the picture I took today. I am currently 21 weeks (hit that on Saturday), and now 3 days post-op and feeling pretty good other than the infection! 

Even walked all around downtown Park City today... but did have to ice my belly when we got back. And both of these pictures were taken in our amazing suite at the Westgate Lodge, courtesy of Steve's parents! We are here with most of Steve's family, minus his sister Amber and her husband Kevin in West Virginia... she feels too pregnant to travel! Anyway, more on the trip in another post... hopefully :/ I'm still really behind thanks to my obsessive photographer of a husband ;) 

The Cry That Shook OUR World

*Play song, "It's Us Against the World" with this post

It's hard to shake us, or get us down these days. We've developed skins of tough hide through our experiences. But this did it.... it did it good.

I have been very surprised and pleased with myself at how I take news each and every time I hear those words.... "I think she'll need surgery to correct this". I have only (that I can remember) broken down twice over it... of course the first time ever I'd heard those words, and then of course that lonely feeling day in March of 2010.... only twice, not too bad when there's been numerous times it's been said. Until today. 

I have learned now to never again utter the words, "we're done"... because then it just simply will never happen. I was told a few weeks ago that Em would be needing some more work on her feet... this I could take though, even though it was the first one to shatter those words of, "we're done". Perhaps because I knew in the back of my mind that there would always be work to be done on those poor crooked feet... and perhaps it was Dr. Stotts, who always seems to make me feel at ease when he delivers the news of impending surgery. 

Today was different. Maybe it's because these doctors are more clinical with the way they deliver news, and not really with much compassion...  not that there's really anything wrong with that... well sometimes there is I suppose. But, they are all great doctors that we respect, and in fact most doctors are this way. I have come to learn that Dr. Stotts is a rare treasure, a one of a kind for sure and we are grateful for him and the way he cares about our daughter. 

It is not a "for sure" thing yet, but the fact that not one, not even two, but three doctors all without consulting one another came to the same conclusion- Em will need some reconstruction in her upper jaw and face. Not quite sure how anyone could take this news, but after the third time I heard it today, I felt a lump rising in my throat. I gave it my all to swallow it away, as well as keep back the tears that were threatening to spill over and blow my cover completely.... you know, that "tough hide" cover? The mom who smiles and nods and is accepting of all things.... I like to pretend.

This is exactly as unpleasant as it sounds. Not only will she be having jaw widening done, but most likely some work behind her nose, and other facial bones.... this will not be an easy procedure, and most likely very, very painful. Well, why don't you just rip my heart out and stomp on it? Because that I'm sure would be less painful than processing this information.

I did finally let that lump and those tears take over when we finally reached the car. I have not cried like that in I don't even know how long. The kind of sobs that become you... shaking, catching breath, just letting go. And I had to keep reminding myself that it was ok, because by letting go I could then begin the process of accepting. I'm not there yet though, and I don't know how long it will be. 

We will have another sleep study to determine how bad this tiny nose and jaw are affecting Emarie's breathing.... sleeping.... quality of life. After that, it is likely more tests will be done under anesthesia to pin point all the "problem" areas that will need to be "fixed". After that is when they will decide whether this surgery is absolutely necessary this soon.... but let's face it, it's Em and us... it's going to happen. We did know this was going to happen, just didn't think it was coming for several years. That was actually another big concern- if we do this now, is there a chance she's going to need it again say in those several years? And the answer to that was, more than likely...... *sigh* When will this girl just get to be a kid?? I hate this, I really do.... and I'm tired of acting like I don't anymore. Sadly, if it shows this needs to be done, then there's no way around it. Her oxygen levels look ok most of the time, but that means her heart and other organs are overworking, and that's not good. So we will do it..... but that doesn't mean we have to like it.

And that's ok. 

Number 15- The Aftermath

*Play song, "Keep Breathing" with this post- not the song I wanted, but the song that I deemed worthy to this week they did not have. If you're wondering what song that is, it's "Battle Cry" by Kyler England

I have come to realize that life just isn't right for the Peters unless there's drama.... itty-gritty, dirty drama. I just wish it didn't affect the littlest of us so often. 

My daughter is amazing. 

Again and again and again I watch her come on top of these things that would literally cause me to crawl in a hole and never come back. How did I get so blessed to be her mother, let alone just witness these miracles time and time again? 

Nothing is ever routine for her, nothing is ever ordinary.... yet, she is extraordinary. I just wish sometimes that I could do it for her, yet I know she takes it on much better than I could ever dream to if it were me. I just wish I could try.... even if it killed me, I would do it.

This wasn't the surgery... no that went perfectly and she is healing nicely. She went off narcotics while we were still in the hospital, around 5 days after her surgery. Don't think I could do that after a hip surgery! The drama of this week comes in something we've had to deal with on and on... and on again and still with no answers as to why. 

But I'll start off where I left on the last post, and like I said that first night went pretty well. The only thing was that Emarie woke frequently, not necessarily due to pain, but really I don't know.... if the girl ever felt pain from the surgery, she didn't show it. No, mostly she woke because she couldn't get comfortable. You see, when there's a very large foam block strapped between your legs, I can only imagine it makes it hard to move around. 

This was taken at 4:25 am, thank goodness for that iPhone! 

That morning (Thursday), daddy had to go to work, so Em and I both got what little more sleep we could and later that afternoon the physical therapist came in with a wheelchair and instructions for how often Emarie needed to sit up a day.

This is pretty much how it went that day.... don't get me wrong, she didn't complain and no, she's not asleep here. What she did was make a tent with her blanket and sort of put her head underneath to watch a movie on my iPod. I just think it was rather tiring for her, and unfortunately when we put her back in the bed, we'd discovered that she'd been bleeding from one of her incisions :( This was only about 20 minutes.

Next day (Friday) went much better and she stayed in the chair for over an hour!

Later that day the therapist brought in the chair that we would be taking home for about a month.

This is a picture I captured of Em taking a nap that day

She is sleeping with her eyes open.... she does this every once and awhile and it really creeps me out.... even though I love her to pieces!! 

Steve and I both spend the night at the hospital when Emarie is here. Due to all the things that have gone "wrong" in times past, there just is no way we could sleep comfortably an hour away just in case. But, if I had a dollar for every time someone was  concerned (for lack of a better word) about the fact that we were both spending the night.... well, I'd have a lot of dollars ;) Just to give you a clue, here's a conversation I had with the tech the very first night:

Tech: As he's looking at me with the most confused look! "You... you're both sleeping.... h-here?"

Me: "Yes we are"

Tech: "You know.... you know....y-you can only have one.... uh, bed... uh I mean sleeper, r-right?"

Me: "Yes we know that.... it's not our first time" ;)

Tech: "They.... they only fit one person-n"

Me: "Wanna bet??.... No, just kidding, settle down! We know how to do this, we take turns, one sleeps on the, uh, "bed" while the other takes the chair... until it's just too hard to bear it any longer... and then we switch! See everyone's happy!"

Tech: "Well.... I d-don't really know what to... to... do" and then after a very long and puzzled pause... "How many.... like how many blankets and uh... pillows should I bring?"

Me: "I promise this isn't that hard, there's only 2 of us. We'd both like 2 pillows and probably 3 blankets total will be enough"

Tech: "So 2 pillows?"

Me: "No, 4 pillows"using my fingers as well here

Tech: "Ok, I'll be back"

15 minutes later, he brings us 5 blankets, 2 sets of sheets and about 10 pillows.... I just smiled and said, "Thank you, that will be all for tonight"

See what we deal with?? Can't even tell you how many times people ask who's watching our other kids too! 

Anyway, so like I mentioned, Steve and I switched off in the pull-out bed, and he may be able to sleep somewhat in a chair... but for me it's absolute torture to even try! So I killed a lot of time facebooking, pinteresting and blogstalking ;).... and I guess making up words apparently! 

But Friday evening, I had to take a moment, a moment because I heard the unmistakable sounds of a life-flight helicopter landing, a helicopter that was unmistakably carrying a child because it was coming to Primary. I cannot tell you what it does to me to hear or see one of these. Same thing with an ambulance, or even someone wearing the "life-flight" insignia. I took that moment to pray for that child.... for their strength, for their courage and their comfort. I also prayed for this child's parents, because they need prayers just as much for all of these things. I cannot ignore how close I've come to sending my child in one of these. Cannot also ignore how close my sister came to riding in one of these over 17 years ago, but sadly they didn't get there in time. It's enough to make anyone's heart stop when they hear that sound. I also could not ignore taking time to be grateful in that moment. How lucky we are each time we take Emarie home from there. That hospital is filled with children fighting battles, the weight of which should not have to be carried on such young shoulders. My daughter I do include in this category, but I also know there are parents here that are constantly faced with terrible decisions. Decisions of ending life support... of hearing doctors tell them there's nothing else they can do for their child's cancer.... and then those tiny little babies that are born much, much too early. The staff at Primary are amazing, and we are constantly indebted to them. One of the best is making sure the time a child spends there is the best it can be.... even if that's all they have left to do.

Yes, I am blessed every time I take her home..... each and every time.

So, coming back. As you can imagine, switching off sleeping would have the tendency to make 2 poor parents very tired! So, sleeping during the day was pretty much a daily occurrence. On Saturday, at one such time of Steve being asleep, and Emarie was asleep as well... so, I got bored. This was also the day of pretty much the only snow storm Utah has seen. So what did I do? I took the camera and went all over Primary, U of U hospital and took some very random pictures... here's just a few

 Outside and it was still snowing!

 I can't believe I've never caught a picture of Em's favorite elevator here! This is on the outpatient side (she doesn't ride the one by the main entrance very often) and she gets so excited when this is the one who's doors open to her!

Yeah, this was just a nerdy attempt to capture her surgeons name plate.... yeah, don't ask!

After I got back from my photography excursion... the two sleeping beauties awoke and we got ready to put Em in her chair again to see if we could maybe get away with taking a walk... and without cords! She had no IV at this point (they had taken it out earlier that day since it was going bad), so the only thing left was her oxygen and well, this was getting on to be too long for her needing it after a surgery... but when we tried it off, it didn't go so well.... but we didn't let it stop us and we took Em out of her room for the first time that stay!

Fyi, she had to take her balloon with her everywhere she went!

This is also when we had our first and only (mostly due to the inclement weather) visitor! A friend that we subsequently met here almost a year ago. I talked about it in this post. Not sure why we didn't document her being here (meaning I don't have any pictures of her)... but she did take this picture for us!

 Unfortunately there were more people in the playroom than I'd ever seen! I'm sure this picture was very hard to take! But thanks for coming Kelly! And thanks for the picture! 

Little miss found her favorite thing at the moment! A piano!

 Really starting to think she might have some talent here too!

I took this picture after we got back to show how badly Emarie has been scratching herself! Just to paint an even bigger picture, she pulled out an IV, nearly pulled out her epidural and tore up and ripped off countless bandages on her incisions! 

Sadly enough, it actually got a lot worse than this... I really need to take another picture!

We had been told that day (Saturday) that we would likely go home the next day (Sunday).... though I'm never convinced until I see the discharge papers! But sadly that evening is when everything took a turn for the worst.

I had begun to notice Em's belly being swollen on Friday. Doctors assured me that it looked normal, but I still suggested maybe adding some meds that would help, Miralax (which she should have been getting everyday anyway) and eventually a suppository. But that evening (Saturday) I had a bad feeling I couldn't shake, and around 2 am, those worries were confirmed when Em threw up. I wish I had paid more attention to what was in the first round of vomit, but I do remember it didn't look "normal". But, we got her cleaned up and she was already falling asleep again, so we all went back to sleep after that. 4:26, she vomited again, and this time there was no mistaking, there was definitely blood in it. Also, this such instance with her swollen abdomen and the thrust of her heaving, it was enough to pop her g-tube out. Nurses informed the doctors and then after changing her diaper that only contained blood, they were notified again, and a KEB x-ray was ordered. Belly was measuring nearly 60 cm at this point, which is more than 3 inches bigger than her normal waist size... very alarming.

To really give you an idea of how much bigger this is, I'll share this picture again from right after her surgery

You can see how she clearly has a defined belly button here, above, not so much, and you can see her ribs. Also in this picture, you don't see her veins like the above picture.


Thus necessitating an x-ray

Labs as well had been ordered at this point, feeds were stopped, so IV's were reinserted (I say plural, because there were about 4 different ones put in to insure that they'd always have a working one with her tendency to loose them so easy). The blood draws were ridiculous, poor girl had 6 in 2 days.... like I said ridiculous! And most of them were really early in the morning ugh! 

I know that #4 was done at 4:30 am, and thankfully that was the earliest, but talk about yuck! I mean who orders blood work that early in the morning?? All of this is more than anyone should have to put up with.... but let alone someone that's recovering from a huge surgery and dealing with their intestines not functioning! I'm sure most would not be able to find the ability to even smile.... but not this girl.

This is after one such blood draw (on Sunday) and IV (they coupled these together a lot because it was easier). I had climbed in bed to help hold her when I noticed how hot she was and temp showed 103... and all I was thinking was what else is this poor girl going to have to put up with? So of course that was a reason for more labs... even though she didn't vomit after the 4:30 time, every diaper that day was still only filled with blood.

First round of labs showed that her hemoglobin levels were dangerously low, thus requiring a blood transfusion.

This picture was made in good fun.... but I don't think everyone appreciated the joke. Emarie was making faces because she was starting to feel better after the transfusion started... so really she was happy and these were taken in good spirits to lighten the mood. 


They gave her two units of blood slowly and she was finished up just after 10 pm.

 And she was feeling much better! And see no more oxygen! 

 But as soon as the transfusions were finished we had to head downstairs to get a chest x-ray to rule out respiratory infections for the "mess".

 Poor girl looks so tired! Can't say I blame her though!

X-ray looked normal for a child with asthma, but this wasn't a surprise since she didn't have any of the other tell-tale signs of a respiratory infection.


I guess blood is what Em really needed because she became a completely different kid afterward! O2 levels began to improve, fever went down considerably and the kid had enough energy to last for days! Stayed up until about 2 or 3 am laughing like crazy! 


The next morning (Monday), was when the doctors continued pouring in... but still with no answers. But, I still don't appreciate things like bone marrow disease... hemophilia.... cancer.... being casually thrown around. My heart dropped to the floor at the mere mention of these things, causing me to almost miss when one said that most of these things had been ruled out.... They were at least all in agreement that they didn't think the huge blood loss was from the surgery, or the blood discharge in her bodily fluids... they all believed that it's been happening over time.... yet not something that they necessarily want to explore. The labs that morning had showed that her hemoglobin levels had more than doubled and the GI doctors thought that if there was even the slightest decline in the labs the next day (Tuesday), that they would scope her then immediately. And of course I felt like an awful mom for hoping they would go down, because I really felt there is something going on that needs to be looked at.... but of course no such luck, those crit levels were even higher, so no scope *sigh


But Monday did warrant some more walks and visits to the playroom :)

This girl is getting to be a pro at rolling her eyes.... must be mine ;) Mom is still needing a lot of practice with the new camera!



Tuesday was when the resident pediatric surgeon came in because he had come across Em's chart, and he too was concerned. After receiving her history from me and assessing her himself, he thought that she should be scoped as well.... but of course the GI doctors were not as convinced. And they suggested we maybe see a blood specialist to rule out any blood disorders. But after asking the Ch18 community about this and since there's no family history, I didn't think it was necessary.... unless maybe nothing is really found related to GI, then I may revisit this claim. The surgeon also believes that she has been slowing loosing blood over time... and really that's not ok. Anyway, my stance is to not let it go, and I've been on the phone with different doctors since we've been home. I know her pediatrician will help, so we'll be seeing him soon... and her regular gastroenterologist we've already scheduled with for the 1st of February.... and trust me, this time I'm not letting it go. 


Other than the news from GI, Tuesday was the best day we spent at the hospital thus far.

After so many pictures, Em kept hiding her face.... so this was my sneaky attempt at getting her through a hole in the side-rail of her bed ;)


The two of us got to explore the hospital that day, and she joined me for lunch, which I had to admit was a first ever for when she's been admitted! 

Us at lunch, photo courtesy of Em's iPhone


Em joined both her daddy and me again for dinner that evening

Sadly he only got pictures of the two of us though!

And our funny little girl laughing at Sesame Street.... got to love modern technology! 


Wednesday was discharge day, which means that she spent 8 days in the hospital. Since she made such a turnaround from her transfusions and was looking great, they didn't see any need to keep her, and we agreed. No reason to stay in a hospital bed when the doctors haven't even agreed to see what's going on anyway.... *sigh


But we were happy to be going home... and so was one sweet little girl!

 Getting her hair done... looks thrilled, right? ;)

 All ready!

 Couldn't resist this! That hat was from her grandma Peters for Christmas and doesn't it go so well with the pj's and  gingerbread toy my grandma gave her??

 "So.... why aren't we leaving yet guys??... Seriously, put the camera down and let's blow this joint!" Note how red her lips look! Seriously, scroll up and see pictures from before and tell us what you think! Looks like that extra blood made a difference in a lot of areas! 

The iPhone photo I caught that I absolutely love!  :)

 Yeah this picture is too funny! Really does look like she's getting ready to go sky diving! This wonderful thing strapped to her is her replacement for a car seat until she recovers. Actually she proved to be quite a challenge to the car seat team with her wedge and all. This is the best they could come up with... much to my dismay :(most know what a fanatic I am when it comes to car safety!)

 "Seriously, do you really need to take pictures of this??"

And here's how she looks when all hooked in the car... we thought she might not like it, but we were wrong, she quite enjoyed it! All I can hope is that she doesn't get too use to it and won't put up a stink once she's able to ride in her car seat again! Needless to say, she won't be taking any unnecessary car trips in this!


So that's it! Sorry it was so long!!!