GOODBYE FEEDING TUBE!!!

It's offical, we're DONE! As of Friday, Mya had another swallow test at Children's Hospital, and she is set to be done with the feeding tube and to be back to normal fluids by the end of this week!!! We are so amazingly thankful to have our little girl back to 100%. Such an awesome thing to have a relatively short recovery, when we could be dealing with some major damage from her arrests. God is so good! We also lucked out and were able to finally get the H1N1 vaccination on Friday without standing in line for 4 hours. Thank you all for your prayers for Mya's recovery. We are so blessed to be beyond recovery at this time! HOORAY for a normal girl! What a perfect time for THANKSGIVING! Miss Mya is as sweet as ever. We are constantly impressed by our little one bopping around on her own. She's so grown up these days! Her latest favorites are saying "uh oh!" reading books, eating everything- bananas are a favorite, and is now doing about 8 different sign language signs to communicate her needs. Goodbye nasty feeding pump! This is the "helper" we've had for the past 4 months. Although it's been useful, I'm not sorry to return it to the home health company...

Mya is a little jabber girl, she's got lots of little sounds, she often seems to be trying so hard to tell us sentances, it just makes no sense to us yet! So sweet, here's a little snip of her evening play.

Giggles

We were cleaning up from Auntie Angela's visit, but Mya couldn't resist the blow up mattress fun! Such sweet little giggles!

Mya is back in daycare, another step to normalicy for our family. She's learned so much already in a week, being around other kids and a great teacher! I've been trying for months to get her to say "please" and "thank you" in sign language, it took less than a week for the daycare team to get her to do it! Super impressive. She's also verbally saying "yes" when she didn't before. It seems she's transformed overnight from baby to little girl, doing much better at communicating. We have another swallow test this Friday to see if she can start to drink thinner liquids and if we are closer to being done with the tube. We're still in need of the H1N1 vaccination for her... let me know if you know where we can get it!

Happy Halloween!

We have a busy little bee this year, she's crusin like a champ! We decided to take some pictures between changing her tube, so nice to have a break from the tape on her face!

WONDERFUL NEWS!!!

Today we went back to have a check up on Mya's heart. This was a pivotal visit, as last time (over a month ago) our Cardiologist was concerned that the left side of her heart was still a bit enlarged and hadn't changed as much as is should have post surgery. At the time, Mya was still on pain medications, so we decided to wait another visit to see if any progress would be made. We were a little nervous going in today, as it could have meant more medication and more to deal with in a negative light. However, after an echocardiogram and xray, Mya's heart seems to be slightly improving. We are so thankful! Her xray also showed less fluid on her lungs, so we're able to take her off the current diaherretic medication she's been on. This means that we are finally off all meds, except the asprin she'll be taking for the rest of her life. They are also trying to help get her off the feeding tube, we're going to start decrease the water through the tube to see if she'll drink more thickened milk on her own. That would be so wonderful! We will all look forward to eliminating that nasty tube. Here is a picture of Mya and our Cardiologist. The whole team has become so important to our family, we're so thankful for their help! Our friend Jen has been watching Mya for the past few weeks. She's been great to take care of her, feeding tube and all. Mya really has a good time playing there, she really likes Morgan who is four, a sweet little friend!

Big News!

Mya is walking! She's pretty tenative, but she can do it! At age 14.5months, we are now in trouble with a fully mobile little miracle girl. We are so blessed that she's motoring around like nothing ever happened to her little body!

Visiting the Pumpkin Patch

We enjoyed time with Uncle Steve & Aunt Michelle this weekend, and took a trip to the pumpkin patch. Nothing like pumpkins, corn on the cob and fresh apple cider! Yum! Thursday Rob took Mya in for another swallow test. She is much better, but we've yet to hear the diagnosis from our doctor. We're hoping to get the tube out, but are guessing that we'll have it in for another month. Kind of a bummer, but our Pediatrician has also recommended that we don't put her back into daycare until she is vaccinated for the H1N1 flu, which is TBD on the release. So, we have 2 reasons now not to be around a lot of kids with germs, so our friend Jen will be watching her, she's such a saving grace!

Our grown up girl!

We're not done yet...

Last week we went back to the cardiologist to have another echo-cardiogram of Mya's heart. The bummer is that the left side of her heart is the same size as it was when we were discharged from the hospital 2.5 weeks ago, still a little enlarged. That means that either it hasn't had enough time to heal or that the 2nd surgery didn't completely do the trick, and her heart still isn't functioning at 100% (although much better than when we started with). The left side is not working as efficiently as the right side, and blood is "backed up," thus becoming larger. At this time, we'll continue to have her monitored and pray that it's just time that is needed for healing. There is a medication that she can take to help heal the situation, but they didn't give it to us yet since she still isn't off her narcotics that we're still weaning from (we have a few more weeks of them). Our cardiologist is still hopeful that it can heal on it's own. The good news is that we know what to look for; the bad news is that there is the possibility of more "fixing" down the road, worst case scenario is that she'd need another surgery. If her body can hold out for a few years, it would be behoove her to be bigger, as more options are available. So we're a little disappointed, but are glad to know the reality of her status.

On a lighter note, Mya is doing great from our perspective. Her little voice is almost completely back, and we're thinking she's going to be walking in the next week. She's taken a few steps on her own already and stands alone for long periods of time. She isn't needing any physical/occupational therapy (she didn't qualify), as she's progressing very normally. THANK GOD!!! Unfortunately we have to wait 3 more weeks to possibly get her tube out, they couldn't schedule a test sooner.

Thanks to many friends and Rob's co-workers, tonight we went to Dinner's Ready where we were able to make a bunch of meals for our freezer- so great! We had a really good time putting them together (Mya liked it too!), the owner of the shop even knew Mya's story before we got there. This situation has affected so many different people, it's amazing how our little sweetie has touched so many people. Thank you so much to the many contributors, this is such a blessing for us! One of the hardest things is getting back to "normal" life, and having food ready to cook is perfect!

Our little stinker is growing up so fast! She has figured out a few signs that helps us understand her, it's great. We enjoy every second with her, she's so amazing!

Fun with Aunt Suz & Trent

Many thanks to Suz for coming to watch Mya for the week. They had a good time playing together, although she had her hands full! Mya & Trent are 8 months apart, Mya alone is a full time job right now, and adding the baby made it quite the challenge! Mya is super busy now, motoring all around and chatting as much as her little throat allows. She's doing really well. I had a good week back to work, although exhausting getting back into the swing of things. Rob will be with her this week, it'll be good Mya/Daddy time!

Trent Cousin Play Time

Not quite 6 months, and already sitting up and having fun on the car! Here is her current voice level... it seems to improve daily. We're still hopeful for only a couple more weeks of the tube!

Go Hawks!

We had a nice family day at home yesterday. Mya enjoyed playing with Daddy, he returned from a business trip to Salt Lake City. My sister Suzanne and her little guy flew in to help watch Mya this week. I gave her a crash course in her care last night and I'm headed back to work today. It's pretty tough to leave our little one, but I'm thankful to be at more of a normal life status!

Today has been a sleepy day for Miss Mya, she took a nap for 5 hours! We've weaned down the

major drugs from 4 to 3 times a day, and yesterday was a tough day for her, really feeling the reaction from the change. It's nice that she was able to rest today, and she's seeming a lot less agitated. I'm loving the change since it means that I don't have to get up at 12:00am & 2:00am anymore!!! I think it's the first time I've slept 6 hours straight in 3 weeks! So great. Mya also seems to be doing better with less formula in her little tummy. I cut down the quantity so she'd be hungry for real food, and it's worked great, plus she's not throwing up 3x a day anymore either. We meet with a Occupation/Physical Therapist tomorrow and our Pediatrician on Saturday, hopefully we can get another swallow test scheduled and she'll be healed enough to be off of this tube.

We had a nice day together, it's certainly feeling like fall. Mya got to wear an outfit made specifically for her by our friend Krisite Young, it's so cute! Check out her modeling pictures above! We also "harvested" our tomatoes today. Most of them are green, so I decided to chop all of the plants down and to lay them on the patio to get more ripening sun, we'll see how successful that is. Otherwise, we'll bring them in before it gets too cold at night... I just don't want the fruit flies in the house!

Last night we finally bought our long debated vacuum cleaner. Hello Dyson, goodbye Hoover!!! I love this thing! I've vacuumed the whole house today, and I think I cleaned up 2 years of junk and dirt from our carpet. It is amazing. I had to dump the canister twice! So gross! It is defiantly a good purchase. We've been talking about a new one for at least a year, the old one is 11-12 years old, time to be traded in! Super lame to blog about this, but it's making cleaning much less of a chore!

A Wonderful Labor Day Weekend

We had such a nice "normal" weekend! Mya is progressing like a champ. She's seemingly almost back to her previous status... crawling, pulling herself up on stuff and wiggling so much it's hard to hang onto her at times. She's even eating "normally." She hasn't been too keen on the baby foods (she doesn't like Mommy to feed her anymore, she can do it herself), so I decided to lower some of her formula amounts (thru the tube) so that she'd be hungry and we went for it! She's back to eating her peas, cheese, meatloaf and strawberries. It was just like getting back on a bike! Maybe it's a bit soon, but I figured her little tummy would let us know, what's one more puke session? However, she's been doing just fine, plus she's been a lot more aware of what we're eating and certainly wants to have some too! Thus the first taste of corn on the cob! I've been giving her whole milk in a sippy cup with some thickening stuff, it's not exactly quick for her to drink, but she's seemingly really thirsty, as she accepts her cup with excitement every time we give it to her. Now we're giving her both formula and water feedings thru her tube. Her meds continue to decline in volume, and she's seemingly unfazed by it. Hooray!!! Her voice is also slowly coming back, we really noticed it more yesterday, she's starting to try to babble again. SO REFRESHING!

We had a nice weekend, Aunt Michelle & Uncle Steve came for a visit on Saturday, had a family day together on Sunday and Monday the Cox family came to see Mya. She was so excited to see other kids! It's been such a long time for her to be around other kids, she couldn't stop watching and playing with the boys (neither could Rob...).

Swallow Test

Yesterday we went to Children's for Mya's swallow test & went back today for the information to be translated for us. While she didn't "ace" it, she is able to do solids and liquid to a "honey" consistency. That means we have the tube for probably 1-2 more months, since she probably won't get enough fluids drinking honey out of a sippy cup. Disappointing to have the tube, but I'm determined to do as much for her as we can to get her off of it by the end of the month. I am encouraged that she can eat solid foods, I couldn't imagine another 2 months of baby food alone, she's definitely over that! I'm planning to do my own formula weaning schedule- they essentially gave me the green light to do what I want to do. I've learned pretty quickly that the Children's hospital staff is really good at dealing with inpatient care, but isn't suited for the follow up information. All of our appointments are with very smart people, but their job scope is so narrow, they can't cover all of the decisions, and often refer me to others, sending me in circles. It's been a bit frustrating, but after our appointment today, I'm feeling more empowered to make choices for Mya myself. So, we're going to try to get her off as much formula as we can and transition her to normal meals. This will be slow, but I think we can get her back to a normal schedule by the end of the month. The healing of her throat is obviously up to God... we'll see if it happens by October 4th when we're hoping for her to go back to daycare. Our leave time is drying up, and we need to be back to normal as soon as possible.

A "Normal" Day

Today we enjoyed our first day out, since we've been home. It's already been 1 week, and Mya is making huge progress. She actually brushed her teeth for the first time, previously she'd throw a fit if we even got close with the toothbrush. She's motoring around backwards on a little push car, and starting to mimics us more. It's very exciting to see our little girl back to somewhat of a normal status. Today we met Andrea, Carter and Elliott at the zoo. I was starting to get tired of being home for a week straight, plus the weather was far to beautiful to be inside today. Mya was great, she really likes the giraffes and the elephants. We all enjoyed a wonderful day out together.

Tomorrow we have Mya's swallow test & meeting with the pain team. I'm praying that we can be done with this tube. It's actually not been too bad, except for when the stupid thing pops open on it's own or when it needs to be changed. We've had accidents in almost every room of nasty smelling formula that has dripped onto furniture or the carpet, unintentionally. I don't think I've done this much laundry in a long time & we're planning to have our living room carpet professionally cleaned as a tube removal celebration. The topper was today, Mya was playing on our bed as I was folding laundry. I picked her up to move her and she was sitting in a puddle of the formula. That straw definitely broke the camel's back. I don't think it would be nearly as annoying if it didn't stink so much! Now we have to sleep with the stench! So gross.

I digress... The swallow test will decide with type of fluidity level Mya is "safe" for, and I think she's going to do great, just a gut feeling. I just hope they see the improvement that I do! The meeting with the pain team should be pretty uneventful, as we feel the medication wean has been a good plan, we haven't really noticed any withdrawal signs this far. Such a blessing! It would be nice to shake a few of the other meds, hopefully we come home with a shorter list in addition to losing the 2:00am med time.

We really appreciate your continued thoughts and prayers, we're not totally done... but each day brings us more normalcy. We definitely attribute it to all of the amazing prayer you've contributed!

Home Sweet Home

While it's had some challenges, being home has been wonderful for all of us. Mya is making small improvements daily; she's sitting like a champ now, working on getting her crawling strength back and has tried to pull herself up to the couch a few times (assisted, of course). Her voice is even coming back very, very slightly. She's even doing a few things that she didn't previously; identifying her eyes, stacking her tower of rings when previously she'd only take them apart, and putting balls into a toy rather than just watching us play with them. We are enjoying every minute she's awake. She's only sleeping 4-6 hours during the day now, when a week ago she was only awake 4 hours. Such a wonderful change. Her sweet little personality is clearly back to "normal."

A few of the stressful times we've encountered:

Last night I was cooking dinner and it was time for Mya's feeding and medicine. Rob noticed that her feeding tube was dislodged. We decided we had to put in a new one. This is nothing short of a very stressful process. Rob tried to keep her pinned down (not easy I might add) while I threaded the tube down her nose to her throat. We were worried that it wasn't in the right spot; we had to do the "tests" several times to make sure it was in her little stomach. Needless to say, I got more and more stressed out about it as we kept getting negative results to verify its location. Time was ticking and she was freaking out. Another deep breath needed. Finally we were able to relax enough to get everything done appropriately. In the mean time, dinner was on the stove burning. Soon after that we decided that she hadn't had a BM in a few days, so it was time. Enter suppository. Yes, Rob allowed me to do the dirty work on this one. This stuff wasn't in the pregnancy manual I read... no one told me I'd have to do this as a parent! However, we are so thrilled to be where we are, I'll do whatever it takes to get this little one to the place she needs to be. Just don't call me when your kid needs a suppository. I hang up the nursing hat when she's better.

Look! A curl! Her hair grew a lot during the past month!

We're Home!

After a long day of learning how to take care of our child, and waiting 3 extra hours for her prescriptions, we finally made it home last night. I have to say it was pretty overwhelming to get home, unpack the necessary things and to get all of her food pump stuff and medications organized. Once we made a list of what meds & food need to be given when, it's made it much easier to deal with! Otherwise, everything else has gone really well. Mya threw up twice last night, she's been doing it almost every time she wakes up from a deep sleep. She has so much mucus in her throat, she starts coughing really deep, causing her to throw up. Needless to say, that's the only negative right now (plus the formula she's on REALLY stinks). I'm really looking forward to her first bath tonight, we have to wait to have Rob's hands too, since I don't trust her strength of sitting alone right now. She has had a really good day, we've also weaned another step down on her meds, and no visible signs of withdrawal. Thank God. She's been awake a lot today, playing with birthday toys, books and gifts people have sent our direction. They've been awesome! It's so fun to see a normal little Mya. She even scowled at Rob today! It was great! She's been able to sit for a much longer time today on her own, and she tried a couple of times to crawl, but has learned her body doesn't want to work very well yet. We were also able to bring home a foam wedge that she can have in her crib and on the living room floor for nap time. It's working out really well. I'm not sure how easy this feeding tube will be to keep in her nose once she realizes how to take it out. I'm pretty sure the day is coming soon! We have an appointment next Thursday for a swallow test for Mya, back at Children's. This is the next thing we're praying for. They're going to give her a drink of her normal formula, but will put some dye in it and will track how it's being taken in. This is a benchmark time, because if she's not able to swallow thin liquids (which will be the most difficult for her, viscous liquids will be easier), then she'll have to stay on the feeding tube possibly a month or two longer. That would be a big bummer, as I'm pretty sure the daycare wouldn't be willing to manage such a difficult schedule. So, it could require a shift in lifestyle for a while longer. However, I'm praying that we don't have to make any different choices!

Here is Mya's personal pharmacy...

Surprisingly, my flowers are looking great! We've had cool enough weather that we came home to somewhat of a nice looking yard! My first harvest of my DELICIOUS cherry tomatoes! I sure wish Mya could enjoy them with me! Hopefully she'll be able to next week!

Chillin on the living room floor, listening to her CD from Aunt Michelle

I posted some incorrect information on 8/20 that I wanted to clarify. Mya's temporary vocal cord paralysis isn't affecting her ability to swallow. I misunderstood the information originally. I guess your vocal cords are lower than where you swallow, so the two things are not connected. She just needs healing time on her throat to be able to swallow.

Note to self: Surgeons aren't the most gentile with care.

Usually after surgery they wait 2 weeks to take stitches out. Mya's incision has healed so nicely, we've been a little concerned that they haven't taken them out yet, since it seems to have healed over. It's been only 10 days so they haven't wanted to take them out. Originally she had dissolving stitches in her incision and they use a glue to close the skin. Unfortunately, since they had to open her 3x, a slight infection was forming so they had to use external stitches with her third closure. A new surgeon "fellow" (surgeon in training) did the stitches, and the pattern was not the "norm," so our nurse had her come help take them out today. Keep in mind, patients are knocked out when in surgery, and I'm pretty sure gentile isn't a word used in the operating room. Mya about went through the roof when she started to take them out, it obviously caused her a LOT of pain. Even though she doesn't have all of her sounds, it was very clear that it hurt. Poor kid is bleeding from 4 different areas because they were so buried, not to mention it got blood all over her little shirt and blanket. LAME! She didn't have much sympathy for little Mya as she yanked them out (I was cringing all over) However, she did say, "remind me not to do this type of stitch again!"

Deep breath...

Thank God that they usually work on kids under anesthesia!

The nurse just came in and said we are no longer in isolation, her tests came back negative. Rock on! At least we got a single room out of the deal & now we have a much higher chance of going home tomorrow. Hooray! Isolation was more work for the nursing staff than for us, they had to put masks & gowns on prior to coming into the room so they wouldn't spread her possible infection to other patients if she had one. Crazy. Going home seems a fairy tale right now, a dream that may just come true, we'll see!

A Much better day!

Finally I got a few advocates for our opinion on Mya's pain meds... we now have a plan to wean her off of the high dosages that Rob & I agree with. The original plan was going to take a really long time (literally 3+ months) and had some adjustment times that gave her really high dosages mid way through that we thought would only make her crash. It took several conversations and a lot of different people, but we are finally all in agreement with the plan going forward. In the mean time, the reduction to 10 from 12 of her dosages have been a really positive step. She's been more "with it" when she has been awake, and she's been up longer. I wrote my blog posting yesterday at a very frustrated state, but she woke up that evening and was a very normal little Mya. She's sitting on her own finally and was trying to pull her self up in her crib yesterday. So great to see. Another reason we've been kept here longer is because of her junky sounding breathing. She has a lot of mucus stuck in her throat, and it's an area that could contract an infection. Usually she could cough it up, but since she's been on these meds, they seem to be acting as a cough suppressant, keeping it all in her chest. The bad part is that she may have an infection- she coughed up a lot of junk yesterday and was a color that they were concerned with. While I don't think it's anything to worry about, they put us in isolation. HOORAY!!! We now have our own room! I haven't slept better (while in the hospital) in over a week!

My brother Mark joined us for dinner last night, we went to our new favorite calzone place here in the U-district. Delicious food... and outside of the hospital! He's flying back to Saipan this morning to teach another year of school. It was nice to see him prior to being gone for so long! We're going to miss him (and his wife, Brittany who is already there), but Brittany he got to the airport on time today! He should be on his way! Thank you for your comments on my bummer day yesterday- we are so thrilled to be this far in her recovery. The original pain plan made the road seem much longer than the new plan so I've got a lot more hope to be back to normal soon! Today marks week 3 in our journey, 3rd week's a charm???

Will we ever get out of here???

So they've changed our discharge date to probably Wednesday at this point. The one thing holding us back is the level of her pain medication. Funny part is that she doesn't need if for pain anymore, just needs it to wean. If it would have been a "normal" surgery, she'd only be taking Tylenol right now. However, she's currently sleeping 20 hours a day, due to her really high dosage of Morphine and Ativan. I worked a good portion of the weekend to persuade the "pain team" to lower her dosage so she'd have more awake time. Unfortunately for us, it sort of backfired as they decreased one and somehow ended up staggering the timing of the other- which has elongated her sleeping time today. They took her down from 12mg/6hours to 10mg/6 hours yesterday, which for anyone who understands is a super high quantity for a little peanut. While lowering the volume is a move in the right direction, it's currently 2:00pm, she's sleeping, and it's time for another dose of Morphine. Ugh. It's going to be a long road, possibly 2-3 months to be done with these nasty drugs. I just can't wait for the normal Mya to return.

Play Time

Rob was so great to spell me off last night, I went home and got to enjoy 11 straight hours of sleep without any disruptions... wonderful. I ran a few errands and picked up a puzzle for Mya, it seems to be a hit! She also got a birthday gift in the mail that we've been waiting to let her open, Thanks to Benjy & Erin, it was a fun little thing to do today, she likes her funny little shaking pig!

Today we have to change her tube, just to get practice. Big yuck. The only good part is that we can put her medicine down the tube, so we don't have to fight her to get it in her mouth. However, if it means getting out of here, we'll do it!