Hospital Life - April 7

So for a little bit of a reference point read this from April 8, 2015
And this from April 7, 2014

We've been waiting a long time to get the good news we got yesterday - your sleep study results were about the same as the last sleep study; still technically classifies as having mild apnea but not anything they can do but monitor for now. There was still no granulation tissue inside your trach tract; there was a small cyst but nothing that they were concerned about. Your airway has grown enough that "anyone with pediatric experience can intubate her". The stars aligned. The rings of Saturn were visible from Pluto. Everything was signed off on and we were admitted to the PICU for overnight observation with a small size trach. As long as your oxygen level stayed up and you didn't have any extra labor of breathing, the trach would come out.

Well.....What.A.Night.

You apparently don't remember being in the NICU, which is good; but we found out you DO NOT like hospitals. You didn't take a nap yesterday which made you super cranky all day, so I hoped you would sleep really well like at home - we would put you down early and you'd sleep soundly. But at home, it's quiet and dark... It's neither of those things here. So we would sleep for about 45 minutes, your blood pressure cuff would activate and wake you up every hour, you would start fussing which set off your heart rate alarm (which was set ridiculously low) which would make you even more mad. Vicious cycle. I would get you calmed down after about 15 minutes and you would fall asleep until... 

This went on from about 9:00 pm until 3:00 am when I finally convinced your nurse to shut the stupid machine up and take off the blood pressure cuff. Then we got about 90 minutes of sleep before you just decided you were done trying to sleep at all. Around 6:00 I finally caved in and just turned on the iPad with your videos and then laid back down until they came in at about 6:45 and said the ENT was on her way! I had barely finished sending morning update texts and posting when she got here, laid you back, pulled the trach and put a bandage over the stoma. DONE.

You weren't sure what to think about all that.

Your stoma is larger than the ENT expected, so she's a little bit concerned about you sucking part of the bandage in so we have to watch that closely. She doesn't want to sew it up for a couple of months though just in case we need quick access or have to reinsert it. The tract will heal from the inside out so it will start closing up on its own and whatever is still open by the end of summer she will sew up so that you will have time in the fall to learn how to cough stuff out before winter gets here. It seems really odd to already be planning for the winter!

So we get to hang out in the hospital for the rest of the day, one more night of observation (which hopefully will include sleep), and then head home tomorrow. In the meantime, they don't want you taking anything by mouth yet, which makes it super fun when all you have been asking for is your drink. And hopefully they will let us start feeds soon because your tummy is making some loud noises!

Just Waiting...and Walking! - April 2

So we're just waiting. Patiently. Not so patiently but trying to pretend it's patiently.

You slept well during your sleep study; they only had to adjust the sensors twice. You were a little smarty pants when we got there - you started pointing to all the spots on your head where the sensors are supposed to go. Two years old and seven sleep studies later...you know. We won't get the official results until we go in on April 6 for your airway evaluation...which is where the waiting patiently comes in.

This isn't as much an update as a chance to post something while we wait for Wednesday and to let everyone else know that we don't know anything yet.

Here's some showing off instead -

You can count to 10:

And say your ABCs:

And you finally figured out how to get yourself down on the ground, and then back up again:

Lastly, we got this new toy from your PT yesterday and the first thing you wanted to do this morning was get back in it and GO!

Two years ago... - March 17

Happy St. Patrick's Day! Happy Wear Green Day! Happy Overload of Irish Blessings on Facebook Day!

Two years ago, I had no clue that today was St. Patrick's Day. Wearing green was the last thing on my mind. If someone had pinched me, I would have thought they were helping me realize I wasn't dreaming - YOU WERE COMING HOME!!! After 86 of the longest days of my life, I was bringing my Baby Girl home. You didn't have a lick of green on either.

I was reading back over blog posts from around that time yesterday and have to laugh at myself back then. You have changed SO much (as all kids do in their first two years) and have much such leaps and bounds. You have grown - not by everyone else's growth chart, but you've got your own chart and you're sticking to it.

Top: first set of soft casts to straighten out your thumb; purple helped
with wrists and last helping your fingers curve more naturally.

From your first soft casts to your latest AFOs...you've grown :)

You still aren't a fan of tummy time, but have finally figured out how to roll! And even though you never crawled, you are wearing out your pants and your socks scooting everywhere - either on your backside or on your scooter.

You are no longer confined to the kitchen as you found out that
carpet is not that difficult to get across. You are everywhere now!

Pretty soon though, we'll be walking!

You continue to love books - and have started reading them out loud on occasion.

Reading with Nurse V.

You are such a joy to everyone around you - and I'm pretty sure you've convinced yourself that you are the most funny person on the planet. Your latest fun thing to do is watch yourself on our phones, or watch videos of yourself. This video is hilarious - but watching you watch this video is even better!

There aren't a ton of updates for this post, just a lot of reminiscing. The next three weeks will hopefully go by very quickly, and will be a bit of a flash back as well.

Two weeks after coming home that year, on March 31, you were readmitted to the NICU. One week later, on April 7, we were back in the surgical waiting room as they placed your trach. Three short weeks, but three of the longest weeks. We were just getting adjusted to you being home and then got thrown another curve ball.

Here's the curve ball for this year. Next week, you have a sleep study. Two weeks later, on April 6, you will go in for your airway evaluation. If all goes well, the sleep study results are good and your airway is clear they will admit you to remove the trach the next day. On April 7.

Three short weeks. Three of the longest weeks.

Missing Updates - Feb 17

I know a lot of people have been waiting for this update (sorry) but I wanted to wait until you got through a few appointments to update everything all at once!

Feb 4 you had a check in with the Nutritionist / Dietician. For the first time in who knows how long you had weight GAIN! Not loss, not stalled - significant weight gain. The official change was 9.3kg to 9.7kg (about 0.88lb) which might not seem like a lot, but you've been stuck for the last six months so it really is monumental! We have been weighing at home every morning since the transition to blender diet (BD) started and on our scale you've gone from 20.5 lbs to 22. The best part of the appointment was seeing everyone's faces when you walked into the office in your gait trainer. We also went and visited your friends in the NICU and theywere pretty   thrilled to see that too :)

You have taken the feeding changes like a champ - most of the time there was not even a reaction! When we transitioned to BD you were to receive 135mL every three hours, six times a day. After we made the transition we increased your volume to 170 per feed (which was enough to drop one feed!) by increasing about 5mL every three days. After your weight check we've worked on increasing it even more with the goal of getting you to tolerate up to 200mL so we could drop to three feeds of 200mL and two "snacks" of 100mL. We've been able to increase 5mL each day with no issues! So as of Sunday, you are in a little bit more of a normal schedule - three meals and two snacks. Now we just need to work on the times! 

Over the next few weeks, I plan on substituting out some of the ingredients and start blending by meal instead of one blend for the entire day. The idea is to start using more breakfast-y foods for breakfast (fruit, milk, oats, etc) and then chicken and veggies, or some mix of protein and veggies for lunch and dinner. We'll get there - eventually!

You got your last dose of Synagis (RSV preventative medicine) on Feb 11 and they were pretty impressed to see you walk into their office in the gait trainer as well!

The last update is from the ENT appointment yesterday. We went back and forth with a lot of different options and scenarios and here's where we ended up:

You have a sleep study March 24.

We go in April 6 for a MLB (looks at the inside of your trach and airway)

IF the sleep study results look good enough at that point;

AND IF there is no granulation tissue that needs to be removed;

AND IF the ENT determines that your airway has grown enough that she's comfortable with the anesthesiologist at Shriner intubating you for your foot surgery ---

You will be admitted to the PICU and your trach removed. You will have to stay at least one, possibly two days and nights in the hospital for observation.

Alternatives:

1) If the sleep study still shows to much apnea, she'll still do the MLB because that has to be done once a year and that will be the end of this round.

2) If there is granuloma she'll have to remove it and then give Lexi a bit to recover.

3) If the airway hasn't grown enough for her to be comfortable with the anesthesiologist trying to intubate she will write a letter for us to take with us to Shriner at the end of April encouraging them to schedule the foot surgery soon because that's the only thing standing in the way of taking the trach out.

SO - lot's of variable, lots of could best, lots of hopes and lots of prayers needed...mostly for Mama's patience.

To leave you with a bit of cuteness, watch these videos - we've almost got everyone's names down!

25 Months and Blender Diet Update - Jan 22

I fully intended to do an update after the first week...and last week...and now we're almost through the third week of transition and things have been....AMAZING!

The first week our goal was to test your volume tolerance. We moved all of your feedings (about 800mL in a 24 hour period) to the day. Six feedings per day. Every three hours. 135 mL per feed of formula. Best thing: we got to get rid of the pump and do gravity feeds. No tears were shed over not using the pump. Worst thing: our new feeding schedule started with a lemon water flush at 6:30 am, followed by weigh in and feeding at 7:00, and it ended with your last feeding at 10:00 and a water flush at 10:30. You did amazingly well; your mama was exhausted though. 

Highlights of the week: 

- We quickly discovered you needed to be occupied with playing or watching videos in your stander or you would try to "help" us a little too much;

- You had some allergies issues and spent a few days coughing quite a bit. It didn't take us long to learn to keep our fingers on the clamp...you only coughed your formula back out of the tube and all over me once.

Week two we started switching one formula feed per day for a blended feed. I was ready to go with the first blended feed, got it all mixed up and ready to go...and we clogged your button. Twice. Clogged so much we had to take it out to clear it and re-insert it.

We finally figured out that the blender we have was not going to do well enough at grinding up the bits of chicken or rice so we had to bite the bullet and purchase a Blendtec. We had hoped to put it off a bit while we saved some money and make the Ninja work until we knew for certain the BD was going to be a go for us, but you can't do a job properly without the right tools. Thankfully, I was able to find a good deal on Amazon with next day Prime delivery!

So day 1 felt like a failure, but we were able to get one blend without chicken and rice into your system. The Blendtec came in the next day after we had done your two feeds (sans chicken and rice again), but with enough time for me to mix for day 3. WOW - what a difference!

We celebrated Saturday when you got your LAST FORMULA FEED!!!! You weren't too sure why we were wanting to take a picture of you, and didn't seem nearly as excited about it as we were :)

We launched straight into week three trying to get the calorie count up in your feed without making the volume increase too much and finally got that figured out. We also worked on slowly increasing the volume that you could tolerate until we could drop the 10:00 pm feed. So for the next two weeks we'll stay where we're at with 170mL per feeding, 5 times a day. We go back on Feb 4 for a weight check and to visit with the nutritionist so things will be fairly stable until then.

Getting into a new system requires a lot of trial and error, but hopefully we're out of that phase for now. It also means that Mama goes insane until she gets the system down. Our system right now includes about an hour of prep work every Saturday (in addition to the usual snack prep for sisters' lunches and meal prep for family dinners) to get all of your chicken, tofu, veggies and fruits cooked, blended down, portioned out in the correct amounts and into the freezer. I make your blend once a day, then pull out the frozen stuff for the next day so that it has time to thaw before making tomorrow's blend. I also have to blend a double batch on Saturday's since we're gotten back into the schedule of staying at Grammie's house all day on Sunday between morning and evening worship services. I think we've got it all figured out and will just spend the next couple of weeks polishing the system.

Jars labeled and ready for eating

It's not the most appetizing color, but it works!

Tofu, Chicken, and Blueberries/Peas/Spinach in the freezer

In other news this month:

You are working on pulling up on EVERYTHING! We installed a grab bar in the living room / kitchen so you can eventually learn how to get on and off of your scooter by yourself - so far you just like pulling up on it. We've had to be really careful about watching when you're on your scooter because you try to pull up on the chairs, which aren't too stable, and almost pulled it over on top of yourself the other day!

Grab bar in entry way

You got yourself stuck in the pantry because you pulled up on the shelf but didn't know how to sit back down!

We also let a few things go this month - one being cloth diapers, the other being your high chair! You love sitting in the big chairs like sisters so I figured it was time to bring back out the booster seat and you LOVE it! You scoot up to it a lot and say "Lexi's" - I guess just making sure that we all know who gets to sit there :)

I asked you to smile and you started making monkey noises...

You've also taken a LOT more interest in standing up and walking - which means we've got to get that foot surgery on the books as soon as they'll let us because you are NOT going to wait for them!

One of our PT goals is to start working on going up the stairs. Generally you can make it about two stairs before you give up and want to turn around and go back. To be fair though, there are a lot of them, and it takes way longer to go up than down!

The last big update is that we've started working on potty training! After showing off some of your new tricks to the PT, she asked if we were potty training yet because your smart and would probably pick it up pretty quickly! We said we had a potty chair but hadn't really pushed it yet because we don't want to frustrate you if you can't get to the chair by yourself or we can't get you unhooked, unbuckled, and onto the chair in time. So we've started putting you on it right after you get up from your nap and first thing in the morning, and you've gone every time! The next step is learning the sign for potty and how to say potty so you can hopefully let us know when you have to go! You've woken up from your nap and sleeping dry the last couple of days so hopefully you're learning how to hold it until you're on the chair.

I'll leave you with this little ray of sunshine - you've found your favorite song on this toy and know exactly which button to push to make it come on!

Big Changes Happening Here! - Jan 6

On Monday we got the most exciting, forward motion news we've had in a LONG time...

I've spent the last month or so looking into, researching, preparing and planning to ask your GI doctor if we could switch to a blender diet (BD) and get you off of the formula. Most of the things that I've read or looked into (found some GREAT support groups on Facebook and TONS of recipes!) lead me to believe I might have to do some convincing so I went in to the appointment with a transition plan, recipes broken down by nutrients, all sorts of information - I was ready to make my case. I never had to pull out the folder! Your GI doctor just said: "Ok. I'll have the nutritionist come visit with you. Anything else?" "Um - nope!"

So they came in gave us a transition plan that is MUCH quicker than the one I had out together, gave me a simple blend that has everything you need for the day to get us started (so I only have to make one blend and then divide it out) and said "come back in a month for a weight check and we'll evaluate and make any changes we need to." YES!!!!

I wanted to make this switch for several reasons:

1) By two, very few (if any) kids are still on a diet that is primarily formula. Yes, you are eating orally, but not enough to gain weight. You've maintained a steady 20.5 lbs for the last 8 Mondays, but no gain. I knew they would want to increase your calories since you are SO much more active now, and didn't want it to be more powder. You need food.

2) All of the things that I have read about being on a BD point us in a very positive direction: weight gain, less constipation (meaning dropping a daily medication!), better nutrients always lead to overall better health, and even the possibility that you will actually start eating more orally as your body begins craving real foods with all the nutrients you need.

3) We need to get you off of the night time feeds. One of the main reasons you aren't hungry during the day is because you get formula pumped into your stomach all. night. long.

So here's where we're at:

Tuesday we started a new feeding schedule. The dietician wanted to move all of your feeds to the day time to see how you tolerated getting that volume in a shorter amount of time. So this is now our daily feeding schedule:

Starting next week we'll replace one formula feed a day with a blended feed. By next Saturday you should be completely off of formula! They gave us a blend that I can make once a day, so I spent all day yesterday cooking, cutting, blending, chopping, freezing, measuring, weighing, portioning and getting everything ready. Adding weekly tasks and grocery items to various lists. I *think* I will be able to spend about 2 hours every Saturday getting everything ready so each morning all I have to do it dump in x number of cubes of this, of that, a bowl of this and a scoop of that.

Peas, Blueberries and Spinach

Side result - lots of good chicken broth saved up!

Coffee cans work great for storing in the freezer!

You've done fantastic the last two days on the new feeding schedule, although you are NOT thrilled about waking up an hour earlier than usual! You've tolerated the volume change without any issues and have actually already started eating more by mouth, more often during the day! We're not sure if it's because your stomach is being stretched a little bit more or what, but yay!

Side bonus: we're now using a feeding method called "gravity feed" where we let your stomach accept the liquid accept the liquid as quickly as it chooses which means we're no longer fighting the pump AND your feeding times dropped from 30 minutes to about 5!

We have one month to get things going, get adjusted and see how you handle this basic blend. We'll go back in February for a weight check and see where to go from there! Hopefully we'll get to branch out into other blend recipes, include more variety and play with the recipes some to fit our usual grocery list. The eventual goal is to get to the point where I just toss whatever we're eating into the blender and feed it to you.

BIG changes - hopefully we'll see some BIG results!

2 Years Old! - December 20

You might notice that the date in the title does NOT match the date that this is being posted... that's kind of the bad thing about having a December birthday: it gets swept up in the Christmas stuff. Sorry. Welcome to the club!

We had such a fun time at your birthday party! I think you realized a little more that the day was all about you (more than last year at least) and were super excited about that! Unfortunately, being the awesome mom that I am, I only took pictures of the decorations before the party. Sigh. Nanny and Grandpa got a few videos, and posted a few pictures that I swiped, so they helped out with those below but if anyone else took any - PLEASE SHARE!

You started getting really into watching Curious George around the beginning of Thanksgiving so I thought that would be a perfect party theme...but you dropped him just as quickly when we found another show you liked better. You still liked the monkey stuff, (which is good because you got three different monkeys for your birthday and one for Christmas...) but it was more of a joke for me since you hadn't watched George in about 3 weeks at this point. Oh well :)

You still weren't overly excited about the cake part of it all though...maybe the third time we'll get a little more smashing in. I'm still hopeful :)

In other "now you're two" news:

We have new goals for PT - pulling to stand, sitting down safely (not just plopping down), working on going up the stairs (since you've mastered coming down...) 

and cruising along the furniture more fluidly being the biggest ones. You decided to work on the pulling to stand part on your own. the same day your PT mentioned you needed to work on it. We were pretty excited. You've also decided that a great time to work on standing up is during worship - the pew backs are just the right height! (Sorry to anyone sitting behind us who might be a little distracted by the head popping up every few seconds...)

You continue to be obsessed with cars - in fact you got quite a few of them for your birthday and Christmas and insist on playing with every single one of them whenever we play cars. We can't just get out one or two of them. Your favorite new ones are the train from Grammie and the police car from Uncle D and Aunt C that makes all sorts of siren noises (thanks...) You've finally figured out how the ramp works that the PT brought for you to work on standing with so it gets used quite often!

You are vocalizing SO much more now! You've got a handful of words that you say consistently and clearly and are reaching the point of babbling all day long - most of it sounds REALLY important and if we don't understand you, you will find a way to make us figure it out! You also do really well with mixing your words / sounds and signs to help clarify what you want / need. Words you are saying: Mama, Dada (sometimes Daddy), bubu (bye-bye or bubbles), upa (up with heavy emphasis on the p), Lala (Lila), Sisa (Sister...Lainey is a little difficult), Apa (usually means Grandpa), nana (Nanny), Anana (banana), da (yes, this or that), and shishi (chicken). Most importantly: vi-ta which means FRITOS.

You are working on puppy (you can say it but usually don't with much confidence) and we are starting to work on animal sounds. You've got sheep down and I really need to work on getting it recorded when you're in a good mood because it is hilarious. You make a noise in the back of your throat when we ask what a cow makes that probably is more accurate than moo.

You continue to grow and learn more and more things each day - and pull things out of the past that we had completely forgotten about! You not only used your first three word/sign phrase (Sisa, eat, cracker), but you used a sign (cracker) that we haven't worked on in about 6 months - in fact, your nurse and I didn't even realize what you were saying at first because we had forgotten the sign! You have used it daily since then.

The most fun thing about this month was the two days that you carried this box around looking for Daddy. We have no idea how you knew that this box was Daddy's or why you thought he needed it back, but you were insistent!

Your favorite thing to watch right now is the Mother Goose Club and we often catch you making the signs or doing the motions to the songs throughout the day, whether the show is on or not. You've recently figured out Itsy Bitsy Spider and I caught you signing it the other day in the middle of announcements at worship. The best part was at the end when you clapped for yourself and smiled at me because you realized I was watching :)

Big things are happening starting tomorrow that require their own post, but I'll wrap this one up by saying that 2016 is going to be a great year of progress for you!!! Keep fighting and keep working!