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 ;) 

Mommy Swap?

I follow a page on Facebook that is an online special needs magazine called "Parenting Special Needs". Em and I were actually featured in it last year with our Easter story and picture from 2011. But they posted a question that raised quite a thread of controversial opinions. 

Here is what it said:

"You know that show "Wife Swap"? Could you imagine if they did "Special Needs Mother Swap"?... it would be pretty interesting... (not very practical, I know) but, could you imagine? It would make interesting TV and raise a lot of awareness.

Just pretend... how would it work? Would you switch just "Special Needs Moms" or a Special Needs Mom with a Mom that has a certain number of children? Could it be done?"

Of course my first response was that I would be ALL for that, because I encounter so many people on a daily basis that just "don't get it".... Like the nurse for one of Em's specialists that couldn't understand how I could go 8 months+ over the time I was supposed to make her next appointment, I had to explain to her that Em sees no less than 20 specialists, and it is nearly impossible to keep up with who and when we need to see them.... some are every 3 or 4 months.... some every 6, others yearly, some every other year... it's enough to make anyone cRaZy!! I remembered after a bit that as I left the last appointment and tried to make another for 4 months later, they wouldn't let me, they told me I would need to call. I didn't understand this because I was standing right in front of the people I would get on the phone... but it was close to quitting time or whatever! So yeah, if I can't make an appointment that I then can put directly into my phone and later into a planner when I leave, or I don't get a reminder card in the mail that it's time to make an appointment, chances are it's not gonna happen! She still was not very nice, so again I had to sigh to myself after I hung up the phone that she just "didn't get it". Oh and she told me we wouldn't be able to get in to see the doctor until August because of my mistake, which meant that Em would go without one of her vital medications (her growth hormone) for that long. She told me I could try to call the scheduler and get on a cancellation list, or try and see another doctor. So immediately I called the scheduler and she informed me that I didn't need to see the doctor, I could see the nurse practitioner (whom we like better anyway), and she had an opening the following week... Awesome.... so glad I got that nasty guilt trip for nothing! 

So my point is, there needs to be more compassion and understanding for what we as special needs parents go through on a daily basis. But then there are times where I think, "could anyone else really handle this?" Please don't think of me as cocky because I am NOT... for heaven's sake, I barely handle it most of the time! But I have grown accustom to it, I have done it for so long, and it has adapted to us and us to it. There are things I have to do and face that I really wouldn't wish on anyone. Sometimes there are surprises.... sometimes there is devastation. 

Both of these were experienced at an appointment we went to last Friday. And I still don't know why I'm taking this so hard, but I am. We had a routine, yearly appointment with Em's cardiologist. For those that don't know, Em was born with a minor heart defect, called pulmonary valve stinosis, which means the valve that goes from her heart to her lungs is constricted a little bit. So far it is not constricted enough to be problematic and as long as it grew along with her, no intervention would be needed. So they check her, at first it was every 4 months, then every 6... and last year, her doctor decided yearly would be enough because everything was looking good. So this year when we went in a year from the last time we went in, I expected everything to be the same. You see Em faces a lot, but everything she has going on, we have pretty much known about since her first year of life, so anything new that would come up would seem as a shock I suppose. And a shock it certainly was when they told me they found a new problem with Em's heart... her main aortic valve is now constricted, as well as leaking, but it's nothing to be too alarmed about..... uh.... WHAT?! Pretty sure any leaking linked with the heart could be considered bad.... am I right? But no, she assured me that they grade it on a scale of 0-4, and right now she is at a 1+, borderline of a 2.... 3 is when they'd consider medication and 4+ is when they'd consider a laproscopic procedure. All very minor, nothing like open heart surgery. And probably something I wouldn't need to worry about anyway. So why then did I cry the entire way home? Was it just the shock? Was it the unfamiliar? Or was it the possibility that this could be a gateway to whole onslaught of surprises to come... that we may never know all that that missing DNA caused in the big picture of our little girl. Who's to say what could be next?..... and maybe, just maybe, it was all of the above. 

Now I may be worrying over nothing, but it is very likely that this will not be the only surprise we will get in our daughter's health. The truth is, she is at greater risk for a lot of unpleasant things, and that is something we will always have to keep in the back of our minds. I don't like to think about that, especially considering how close we've come to some really unpleasant diagnoses, like hemophilia, bone marrow disease and cancer to name a few. Thankfully none of them panned out though. 

So coming back, could anyone really do what we do? Even the things we consider pretty routine- replacing her g-tube button when it gets yanked out of her stomach, dealing with doctors and medical aspects, which includes an endless amount of paperwork, fighting with the insurance constantly, remembering dosing of all her dozen+ medications she takes daily, carrying her everywhere, as well as lifting her wheelchair in and out of the car.... and having to deal with the fact that you won't always get an adequate parking space to do so. Dealing with the stares, the looks of pity, the comments and questions of those who don't understand how much their words can hurt.... yeah, all that... this is all on a daily basis.

Then there's the other stuff that haunts my nightmares. The fact that a bad cold from a typical kid could be a deadly, nasty RSV for her, that puts her in the intensive care unit on a breathing machine fighting for her life.... and a miracle. The unexplained vomiting of blood that we still never know when is going to hit, and we still don't know why it does. The breathing treatments.... and the one that is the worst for my anxiety- the anaphylactic reactions..... having to carry an epi-pen everywhere we go, giving her countless doses of benadryl in the hopes that we won't have to give her that epi-pen... the outcry and scrambling when a child who has milk all over them is getting too close to her.... the constant worry when she is under someone else's watch, although I trust her teachers and those who help care for her, there is still constant worry. 

This is when I have to take a step back and realize I do a lot. And I do more than I ever realized I was capable of, not because it was my choice, but because I love my daughter and I would do anything for her. I think anyone that is a parent can relate to that though. Special needs parents are really nothing more than parents. All loving parents love their kids, and all loving parents would do anything for their kids..... we just happen to do more for our kids than most. So would you switch places? After thinking on it, I don't think I could. I would worry constantly that she was getting the care that she needs, and really I don't want anyone else to do it. She is mine, and even though I don't always feel like I deserve her, I was meant to be her mother.

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. 

The Unspoken Struggle

*Play song, "Your Love Means Everything" with this post

This post will take you into some of the depths of struggle that we face as special need's parents. If you have a newborn, you can relate on a small level, but at night, I feel like we've had a newborn for four years. However, if you have a child that is either nonverbal or limitedly verbal, then you really have an idea of what this post is about.

Although Em has quite the vocabulary range, she is classified in the medical world as "nonverbal". Mostly because she is so selective with when and how she uses language (even though when she does, she mostly uses it correctly). But she goes in lulls sometimes, long lulls.... and right now she's been in the longest lull she's ever been in. However, we learned very early to never use what the medical world says about our daughter as the stone clad. Doesn't mean I still don't get down.... that I still don't have hard times.... hard nights. 

Last night like so many nights, Em woke up several times in distress. But last night was actually worse, much worse. There was something wrong. Seriously wrong. And I had no clue what it was. And as I did what I could to console her, I felt defeated. Utterly defeated. A complete failure as a mother. This was more than just my daughter not being able to tell me what's wrong, but the fact that I'm her mother and all society tells me that I should know what's wrong without her telling me. Steve is different in these situations, and I sometimes wish desperately that I could be more like him. He always has the right touch, the right soothe in his voice, he is always able to comfort her when I am not. We are lucky he is here. I gave her motrin and benadryl, and her daddy rubbed her back until she fell asleep again.

Still just wish I could be more for her. But, I'll just keep doing what I know, because that's all that I can.... and just hope that it will be enough.

#12 and some of the worst

Play song, "Cosmic Love" with this post

What can I say? I am really tired of having my worst fears/nightmares made into reality over and over again. I think every parent would agree that seeing their child covered in blood is one of the worst nightmares, and I've had that nightmare come to reality twice this year. Which is just plain not fair... well shit really, and I don't care what anyone thinks of me for using that word. This moment deserves a lot worse, so I'm being more than fair.

I will get to the bad in a minute... first I'm going to depict the whole day of surgery, because the beginning will make the post a bit brighter.

So, to start off, Em had a pretty late check-in time... latest ever, by a long shot. 2:15 to be exact. I am on Spring Break this week, and Steve had already taken the day off for Em's surgery, but we debated whether or not he should just go ahead and work half the day. But, we decided we wanted to do something fun before, and that's what we did. We decided on the Tracy Aviary and Liberty Park, since they're both within minutes of Primary. This took a lot of coaxing for mommy since she doesn't like birds (note this post). But, it was a lot of fun, and I'm really glad we did it!

 These were actually taken Monday after Em got her brand new prescription sunglasses (a bit of a splurge, but this girl is SOo worth it!), and we got some sunshine to go with it *nice*

Here's some from the Aviary

 Peacocks

 Emarie amazed at the birds flying all around

 Em and mommy

 Em and Daddy

 Flamingos *strange birds*

 Swans, with their new baby *cute*

 Em and I in front of the swans

 Em as a Toucan

 Tried to catch a picture of them both in the holes, but this is all I caught

 In front of the eagle

 In front of the penguin

Waving

And Liberty Park

 This is a series of special needs swings they have. Em looks like she's drowning in it ;) But she loved it!

At the top of the slide that Em went down all by herself!

And now for the surgery pictures (and these are not with the good camera, so they're going to look significantly different)

Registration waiting area

 Getting a nebulizer treatment beforehand

 Playing with some toys (we had the whole waiting room to ourselves since Em was the last surgery of the day)

Getting checked-in 

Giving mommy a hug (really wish this was taken with the better camera, because it's a good picture)

Pre-OP waiting area

And of course, our classic anesthesiologist picture

probably one of the nicest anesthesiologists we've ever had too :)

The actual procedure probably only took an hour, but they took her straight to the PICU, and we had to wait in the waiting room for over an hour after that. I finally went and asked what was taking so long and that's when we were permitted to go back.

This was Em for about an hour tops....

But, it didn't take long for her to be back to her busy self ;)

 Toys galore!

But sadly this was the calm before the storm. That night is when it got bad. Pain was terrible, nothing was helping (this was depicted in the last post)... but finally we she got some solace at 3:30 am and sleep ensued... that is until the vomiting began at 5 am, but then we were happy and wanted to play. But then, she slept again from 6 until 9 when she threw up again... so she didn't have food from 3 am on (which was a blessing for the horror that later came). 

Things were going really well today, until about 2 pm

But, here's some before shots

 We're glad our best friend Minnie is here ;)

 Have an absolute "no no" on a toothbrush in her mouth, which is fine by Em since she gets to have her oral cleansing sponges she loves so much (what's in her mouth in these pictures)

So, now I'm going to write out what is already the hardest thing in my life to write out (I still haven't been able to write about my sister though). I have to do this, because I think it will help me get passed it (sounds familiar because I said these exact words just about 2 months ago). 

I had been waiting for Em to nod off so I could sneak downstairs and maybe find something that I could stomach... well she finally did fall asleep, and a very willing student nurse was sitting with her, so I felt comfortable to leave for 20 minutes or so. I ate what I could, then proceeded to the gift shop to get my sweetheart a balloon, and couldn't resist the sweet little doll either :) I made the whole trip in less than 15 minutes and was feeling pretty proud of myself until I stepped through the glass and faced my worst nightmare. 

There is a less than 1% chance of post-operative bleeding from a TNA... less than 1%

I am still shaking, shocked, sick..... horribly sick thinking about this. I do not wish this sight on any parent. My dear Emarie, had already a puddle of blood in her lap and it just kept gushing out of her mouth. I should have lost it, but I for the most part held it together as I immediately rushed to aid the panicked nurses. The physicians had been notified and were on their way. When did this start? Why was this happening? Is she ok? All these questions rushed out of my mouth, and I'm sure were jumbled together, and repeated. I remember them telling me it had just started, and being shocked at that because there was already so much blood... so much blood.

It only took one look from the ENT's to know that Em needed to go to the OR immediately. At this point, this is where I lost it. I don't remember how many of them asked if I was ok, or needed to sit down. I know I had texted Steve already: "Can you come back now? Em is bleeding bad and I am really scared." But I had to call now to give him the new information, because my fingers were shaking too badly to do anything else, he was already on his way, but it still seemed like it was an eternity before he got here. But he did make it before she got out.. barely. Never had a harder goodbye into surgery than that one. First time I've seen the inside of the actual OR at Primary too (I hope the last). I couldn't contain my sobs when Emarie started to cry as I walked out of her sight. But I just kept telling myself that Steve would be there soon.

They only took a half an hour to cauterize the few sites she was expelling blood from, they told us that one was very near an artery *I don't have to tell you that that scared the hell out of me*. They even had to pump her stomach, because it too, was full of blood. All in all, probably over 2 cups, but it wasn't measured, so that's not determined. Luckily she didn't need a transfusion, but they were prepared for that, and told me it was likely.

She was in a lot of pain when they wheeled her back in our PICU room 10,  and very hard to console. She kept saying, "OOOww" over and over, and pointed to her head when I asked what hurt. Can't even tell you what this does to my heart... I just have to wonder how many times it can break.... be tormented.... shattered, before it stops altogether. I really don't know how much more I can take. I don't feel strong, resilient, or anything else I've been called this year. 

She has been stabilized now, and has been sleeping comfortably for the last 3 and a half hours. And it's staying that way as long as we keep on top of her pain meds. But, I am still afraid to leave her side... terrified actually. 

They said this would be her worst surgery, I brushed it off as nah, this is nothing.... but they were right.... boy were they right.

I just really can't take anymore of this, so all I want to hear is that it's over.... please tell me that it's over.

Can't let this one go

Play song, "Gravity" with this post

Just to warn first off, this post is probably better fit for my private blog, but strangely, I have this strange need for as many people who are willing to read, to know this. And I know I've gained a few more followers after the nightmare of this past week. But I think it's important to write out what this week did to me, even if it's for everyone to see, because I don't think I'll be able to get passed it, or let it go if I don't.

But, in all fairness, I did warn you.

I have saved things from the hospital before. Stuff from the NICU, like her name tag, the tub she had her first real bath in, her baby bracelet, both the bracelets Steve and I wore to identify ourselves as her parents. I saved things from her first surgery, including her leads, her mask that one of the OR nurses decorated so cute with her name and little flowers, her cute little hospital socks and many other things (I don't recall all of them). I did not save as much as we began raising the tally in our surgery counts, but still saved some things. It started with one big box, then grew to two, and when it started spilling into three, I thought it was time to stop. What takes up the majority of the space by far is her casts. I did not save all of them because there were way too many. Just her first set of plaster to correct those cute crooked feet of hers. And then one of the first post-operative ones. And then a few of the cutely decorated ones (we did have fun with that, you can see on this post). I did not save her spica (3/4 body cast after her hip surgery), because for one- it was HUGE (15 lbs. no joke!), but it also smelled like death (sadly, also no joke), and I may regret that one day, but really, where would we put it?

But I could not bare to part with things from this hospital stay. Like I needed to hold on to every piece of it to remind me how close we came. It really pains me to even think this, but like I said, I have to. I don't think there's a lot that realize what a miracle it is that Emarie made it through this. Had she not been vomiting, I don't know that there would have been a concern to take her to the hospital; and 3:30 am is when her oxygen saturations dropped as low as the 30's. All of us sleeping at home, don't know that we would have known she was struggling that bad to get precious air into her lungs.

Don't think I'll ever throw this one away. A reminder of the 6 scariest days Emarie has ever spent in the hospital

Can't even bring myself to remove this from my wrist. And don't think I will be able to for awhile, every time I look down, it is a reminder of how lucky I was to bring my girl home


But I became a different person after that night. I don't think I've experienced trauma like that since the day my sister died; and I also link the two because of how my mind coped with both of them. I should have fallen apart the moment they told me my three year old would have to be taken to the PICU because she was not breathing well enough at all (her sats were in the 40's even on a mask with 5 liters of oxygen). I also should have fallen apart when they had to place a C-Pap on her to breathe for her. But I didn't, I held it together. I was numb.


It's just like after the accident and I forgot everything about it. Forgot it for years even. Until a dream one night almost 3 years later made me recall every detail. The worst being the sounds, I can't stand hearing those. I don't mind the way my mind copes, but maybe it's not a good thing. I do think I was too young to have witnessed that and comprehend everything of that day, and maybe that's why my mind allowed me to forget. But, then why do I have to remember everything now, over 16 years later? And back to today, why did I have to fall apart over everything from this past week today? At work? In front of those, who not all of whom understand or even seem to care? Most do though, I do have to say that, but even with the out poor of so many caring, why is it that one or two even matter? But they do.

This experience has made me question a lot of things. Biggest of them being: whether or not I will continue working after this school year. And whether it might be the best thing to pull Emarie out of school, and ultimately away from other children until after she has the surgery that will inevitably keep her alive. This one pains me to think about, because she loves school, I have even had a blog post in the works for sometime all about it. Just haven't wanted to share yet because it's hard to think about when she misses so much. But she has real friends, really something that I've wanted for my daughter since she was born. Not to mention she loves her babysitter, and we love her too, and the whole family loves Emarie (I'm sure you've gathered that much if you follow this blog). But I have to think about what's best for the health of my daughter. And sure it's going to be hard for us too- bouncing her around to whoever is available to watch her, the inconsistency, the stress of not knowing who will have her the night before... but we'll manage, because it's for her.

I would like to relay a comment I left on one of my Ch18 mom's shared link for my last blog post. I wanted to put it on here, because I have to admit that I'm not always like this. That most of the time I struggle with the faith end in my life. Not that I don't believe, it's not that. It's because sometimes it's easier to be mad, and question, and scream to the heavens to please don't let her suffer anymore. Hard to admit, but I did all of that in the past week. But, you should know that it's not always like that for me. And a lot of you helped with that, so here's what I said:

Oh, and you should know, that this particular fellow Ch18 mom had been asking for prayers on our daughter's behalf (like many were, really was amazing and humbling to see), and posting the links for people to send us messages through the hospital. So again, I thank all of you.

Ok, now here it is:

Thanks everyone!! You have been an amazing uplift through this whole ordeal!! I look back on it now and realize how lucky we were that our girl even made it through alive. Prayer is powerful, people who have faith are powerful, and unconditional love is powerful. You showed me all, thank you, thank you! ♥


I have always known what a true miracle my Emarie's life really is, but I think someone must think I need to be reminded of that a lot. So maybe now if I write it out, they'll know that I do know it. I know that every second I am with her, I am with a true angel. And now I am screaming that.