AMC Awareness Day - Sept 14

AMC Awareness day is June 30 of each year. This year I had the unique opportunity to tell your story and share about AMC while we were at EYL Camp. In addition, the group took up a collection that we were able to take to the AMCSI Conference the very next week - what great timing!

You're probably asking, what does all of that stuff that happened in June / July have to do with a post in September? I've had several people ask me about the presentation I gave at camp and I FINALLY got it made into a video to be able to share with everyone! Building the presentation took quite a bit of mental (and emotional) effort - it was both amazing to look back at how far you've come and heart-breaking to look at how close we came to losing you a couple of times!

So here is that video:

Now for the fun part: you have made SO MUCH progress since June!!! Going back to the presentation just two short months later, it amazes me how out of date it already is!

We got your trach stoma closed in early August so we are completely through with that. Just yesterday we had a follow up with the ENT and she cleared you for aqua therapy - which is great because you LOVE the water!

She was pretty sad though because she is out of reasons to keep seeing you! She went ahead and scheduled one more check up in 6 months "just to make sure", but after that we are down one specialist! It's a bitter sweet thought because Dr. B has seen us through so much and has always been open and honest and direct with me about what's going on!

The clips in the video presentation show you slowly moving in your walker, but in the last two weeks it has finally clicked that you can go on your own and now YOU ARE GONE! You started chasing puppies at our family reunion over Labor Day and every day since then (with the exception of one or two) you have spent at least 25-30 minutes walking. We've gone from spending 30-45 minutes in your HKFOs to almost 3-4 hours straight - which the doctors at Shriners should be thrilled about. At the last visit they said they wanted us to work up to 7-8 hours a day and we almost laughed because we thought we were doing good to get the 45 minutes!!

My favorite walking experience in the last couple of weeks would have to be you walking into the NICU yesterday and getting to see your doctor, a few nurses, AND your PT, OT and ST all happened to be right there when you walked in. There might have been a few tears.

It is so hard to believe that we have only been home for two years now; but at the same time, every time we go back to visit it feels like a lifetime ago!

Most of our walking has been done outside - you've now mastered walking in grass, on sidewalks, going uphill and downhill, on asphalt and on dirt paths. Our neighbors have been pretty patient with us as we take up the entire sidewalk...and walk down the middle of the street sometimes.

Having family close by has given us a walking goal as well - the first week we were walking outside and you got it in your head to walk to Mimi and Papa's house (at the other end of the block). We made it across the cul-de-sac and past one more driveway before you gave up - but have asked a couple of times since then to walk there again! You've also really enjoyed taking your walker to Bible class and walking around the church building.

Slowly but surely making it to Mimi and Papa's house!

Took about 20 minutes, but she was determined!

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.

"Monday" Update - Sept 10

This is the every Monday update that I promised...and didn't do last week. I knew we had an appointment yesterday at the feeding clinic so I told myself on Monday that I would write it on Tuesday. And then we had Big Big's open house and it never happened. SO...

You've done a lot of new things in the last week - the biggest one being bench sitting! You were sitting up nice and straight on my lap one day without any support when the PT came in and she got REALLY excited... and so this is what we worked on that day:

You looked SO grown up sitting there all by yourself!!! You sat there for almost 30 minutes and didn't come close to falling! You were shifting your weight and keeping control of your balance the whole time! We put one of the portable DVD players in front of you to encourage you to reach and stretch up and it looked like you were sitting at a little computer:

The PT suggested getting you some shoes that had traction on the bottom because you were trying to pull yourself up with your hands, but the bottom of your boots are too slippery, so I found these beauties (just for you Uncle J!)

SLOW DOWN!!!

So you've had a lot of fun with your bench sitting the last few days and then yesterday the PT brought you a desk (aka: cardboard box from Costco with a cut out that your legs fit under)! Our next steps will be to work on reaching for things in front of you and COLORING!!! Time to start working on your grasp with smaller objects! Little Big is especially excited to help out with that one!

Yesterday, we went to the Therapeutic Feeding Clinic for a follow up and they were THRILLED with your progress! They went over each of the concerns from the swallow study we had at the end of June and then fed you some food (which you showed off nicely with!) and checked off all of the concerns! Your swallow is now strong and intentional; you're able to get all of the food off of the spoon by closing your lips completely; little to none of the food is coming back out of your mouth. The only concern they still had for us to work on is your tongue movement. Your tongue usually hangs out of your mouth, but you've gotten much better about keeping it in your mouth, and you're also much better and moving it up and down (which is the motion most needed for swallowing) but still need some work on the side to side movement which will help transfer food from one side to the other, control larger portions, etc. Other than that, you were a doll - you did your happy food dance, ate beautifully and behaved wonderfully as usual! After the appointment we went and visited all of your friends in the NICU. They could not believe how big you've gotten! The last time we were able to stop by was in early June so no one had seen you in about three months - now you have teeth, a mess of hair and your new chair. But you were still the same smiling baby girl they know you to be. All of the nurses that came to say hi just talked and smiled and laughed with you, but your PT and OT were there and I'm pretty sure you got an informal evaluation as they started stretching your arms, looking at your boots, playing with your hands - but they were also extremely impressed with the progress you've made at home. I had texted Dr. G to make sure she was going to be there when we came by so we got to see her and Dr. H as well :)

You have settled in to eating downstairs with us and love getting to spend time with your sisters and Daddy. You still like to help feed yourself (another thing they were impressed with) which is usually ok, but always messy! Mostly, you just like playing with the spoon or bowl, getting the food on your hands, and then trying to figure out how to get it off.

You are doing so wonderfully well! We turned your piano around today so that you could play it with your hands and have pulled out some of the other toys that you were given that you weren't quite ready for - all of that is coming in handy now! PT wants to start working on problem solving skills (finding hidden objects, stacking blocks, etc) so that will be our next fun task!

You're still not a huge fan of pictures or videos, but I did catch you going to town with the piano a few days ago with your feet. You love pulling at the toys and making them move around and make noise and got really excited about something and just got to kicking! You've also got another cute trick: for the last three days instead of shaking your head no at everything you blow raspberries at us instead (which, of course, you didn't want to do for the camera!):

Love you so much Baby Girl! Keep working hard and we'll try to keep up!

Flashbacks - May 28

Today was kind of a surreal day for me. When you came home in March, two weeks later we had an appointment at 12:30 with the pulminologist. You didn't get to come home with me that day. You were really sick and, from what I've gathered listening and talking to everyone who treated you that day, we were really close to losing you that day. Your lungs just couldn't keep up anymore and you were re-admitted to the NICU.

Yesterday marked two weeks that you have been home. And we had an appointment with the pulminologist. At 12:30. They even put us in the same exam room as last time. The entire time all I could think was: You're coming back home with me. Things are night and day from what they were that day. You are healthy. You are thriving. You are growing. You are chunky. Everyone at the office who saw you that day commented on what a different baby you are today.

We got to see a few familiar faces - the trach training nurse who was so patient in helping me and Daddy learn everything we needed to know has had your appointment marked on her calendar since we were released because she couldn't wait to see you again. And she was instructed to take a full report back to the NICU when she returned...so many of the nurses there wanted to know how you're doing. When we were in the room waiting I said "I hear Dr. M. Are you ready to see her?" and you started shaking your head no...your latest trick :) A couple of the Respiratory Therapists who have worked with you over the last two months were there also and you smiled and played and talked to them all.

The dietician checked in with us and said you had lost a little weight, but not enough to be concerned about...it could be an difference in scale, you could have had on heavier clothes last week - that's how small of a difference it was - so they're going to keep you on milk only and keep an eye on things over the next few appointments we have at the clinic before anything gets changed again.

You didn't take a very long morning nap, didn't sleep long in the car, and were so tired by the time we got home that you actually cried. It kind of scared the nurse because you never get fussy like that and she said you were just laying in your rocker and just started crying, tears and everything, and just looked so sad! I came up and rocked you for a little bit and you crashed pretty quickly and got a two hour nap in before it was time for bath and bed. You've been sound asleep ever since then!

It was so good to see familiar faces today, but mostly it was so good to see that they were all in agreement with how amazingly well you're doing since you've been home. You still have such a fan club cheering for you and checking in on you - you've touched so many people in such a short amount of time!

Love you Baby Girl!

Settling In - May 16

Whew - what a roller coaster the last couple of days have been! It's been nice to not have to drive to and from San Antonio every day. We're definitely still adjusting to having an extra person in our house all the time, but it has been helpful - I got to go to the grocery store in the middle of the day (which felt really weird!) and I've been able to keep up with stuff around the house...but it's weird. We're working on getting a schedule of sorts worked out so our days can become a little more regular and routine.

You have absolutely loved being at home - there are so many new things to look at, lots of people to talk to, your sisters get to say good morning and good night to you every day and Daddy gets to hold you and love on you too! Our family is all together now and we are all loving it!!!

You got to come downstairs today for a little bit and hang out with Sisters and Nanny and Grandpa. I'm not sure if you knew what to think of all the noise and excitement but you were intent on not missing any of it - you had your head going back and forth to every new sound you heard! 

Keep being strong and keep smiling!

HOME! May 14

Yay!!!! YOU ARE HOME!!!!

When I got to the hospital this morning the nurse had everything packed up and ready to go so I just had to sign final papers and watch a parade of people come by the room to say goodbye to you. You have such a fan club at the hospital but they all agree - don't come back! You knew something was different about the way we were all acting today and just kept smiling and kicking.

We had a special outfit for you today:

I had to add the hair bow in so there would be no confusion... All the pink and purple superman outfits didn't have capes so we had to get the "boy" outfit. Either way, you are such a super baby and you are my hero. You have been through more in your short life than most people have to go through in an entire lifetime and you just keep smiling and making friends and being happy!

The transport nurse said you fell asleep about 15 minutes into the ambulance ride and then woke up as soon as they started slowing down to make exits and turns. I'm glad you're still ok with being in the car! We got you all settled in and the trach nurse helped get everything situated and rearranged and figured out before they left.

Two of your home nurses were there today to get everything figured out from their end and start making notes and learning how awesome you are. One of them has already said about 26 times that you are just the cutest, happiest baby! Hopefully over the next couple of days things will settle down and we'll get our new "normal" figured out, just in time for sisters to get out of school and start it all over again!

I love you Superbaby! Dr G was sad to see you go but doesn't want to see you for more than 5 minute visits at a time now :)

Check, Check and Check! May 12

Started the morning off with the family conference and got everything on the list reviewed, confirmed and checked off - we are good to go! There were a couple of last minute things (Daddy had to do one more trach change, they wanted ENT to come look one more time) but everything is ready!

The home health company providing all of our equipment came by and did a (very) modified version of their home training (i.e.: this is the same feeding pump you had last time, do you remember how it works? Great. This is the same oxygen concentrator you had....) We spent a little more time on the vent and then we loaded most of it up for Daddy to take home. I've got to get one more small table for your room but then I'll be able to make sure everything is all set for Wednesday! Our home nurses were all trained last Friday - one night shift, one day shift and one backup. To everyone's surprise - our insurance is actually going to pay for 24/7 nursing through August so we don't have to worry about it until then!

It looks like you'll be going home by ambulance Wednesday - this allows for two things: 1) to make sure you have the attention you need for the trip and 2) the trach training nurse can come in the ambulance with you and help get everything settled at the house. Yay! 

You had such a busy day (with only one very short nap) and so much excitement in your room that by the time it all calmed down you still did NOT want to go to sleep... You fought it so hard!

You did that for almost 30 minutes before you finally crashed! Right now, Daddy is on his way home, sisters are with Mimi and Mama is going to get a nap too. I'll be here allllll night with you and am so excited that everything is going so well. Two more days and we'll all be home together!

Happy Mother's Day (Weekend) - May 10-11

So I didn't get to come see you Friday because Big Big had an orthodontist appointment and it was family picnic day at school so I got to have lunch with both sisters and then spent the rest of the afternoon doing laundry and working in getting your room ready for you and your new equipment. Your nurse said you had a great day, spent some time in your swing and some time of the floor for PT and slept REALLY good from about 4 until shift change at 7, then went back to sleep after your bath at about 9 and slept all night.

Saturday, Daddy had to work the last of the graduation ceremonies (so glad that's over!) so you and I had some fun at the hospital! You sat in your chair and watched people for about an hour. It wasn't as exciting as days before though because there weren't as many people here. We spent some time playing and you took a really good nap. They put you in your swing around 5 and you sat and watched people until shift change and then went to sleep for the night. At some point the nurses worked on these:

Sunday was the day to put Daddy through the paces - he got to help with a mobility exercise, learned (and did) trach care, and helped with the trach change - he pulled it out, I put it back in. And he did GREAT!! We had a little bit slower afternoon, we went over the vent settings and Daddy learned about the set up and tubing and connectors. To add to the list of great gifts I've gotten for Mother's Day (I got an angel and chocolates from Big Big, a portrait from Little Big, flowers from Daddy and a card from you and Daddy) they signed off on all of my trach training today!!! Later this evening they'll do the car seat study (standard for all releases) - hopefully you remember how much you started to like the car seat!

I love you Baby Girl!

Finally Got the Smile!

We took another trip today around the unit and went to watch the fish. When we got back to our room the PT suggested we let her keep sitting in the stroller to build up her tolerance and strength. So as people walked by she had a prime seat in her doorway and we FINALLY got a smile in the seat...even though it's obstructed by the tongue :)

It was an exciting day for Mama too - I did my first solo trach change! It was a little more nerve wracking than having help because you were really tired and wanted your hands to be in your mouth and since I wouldn't let you do that, you decided to try and help me instead. Then when I pulled out the first tube you heard a noise outside and turned your head making it a liiiiiittle difficult to get the new on in - but we survived!

Dr. G increased your feed to 100mL per hour during the daytime - you've lost a few grams over the last couples of days from all the excitement and exercise so she just wants to make sure you're getting all the calories you need for your new level of activity.

When I left you were still snoozing from your lunch time nap - one good thing about the room is that you aren't easily distracted from sleeping as before. The last two days you didn't take a nap after all the excitement because there was still too much excitement around you and people coming to talk to you about your trip.

I won't be there tomorrow - Big Big has an orthodontist appointment and then it's Family Picnic day at the school. 

Trip #2 - May 7

We took another trip today - this time in our loaner stroller! It's AMAZING! The company rep was there to get more measurements and tweak the seating and take notes for our set-up. This model of stroller is a little different than the one we'll get but it's still awesome. 

She loved being out of bed (again) and sitting up so straight; refused to smile (again) until the nurse put the phone down; and still wasn't quite sure what to think of the fish.

I have three more things on my trach training checklist to learn tomorrow...and Daddy's going to have a fun Sunday =/ We're still on track for our family conference (with all the doctors, home health company, nursing agency and the nurses we'll have, specialists, etc) on Monday morning. The (tentative) plan is for me to stay Monday all night, all day Tuesday and then go home and get a good night's sleep before Wednesday.

Everything with the ventilator has stabilized but she's having trouble being on the trach collar without oxygen so they are trying to figure that out so we won't be tethered to the vent because it is a pain for mobility purposes.

The last bit of fun news is that we got moved into one of the private rooms! It's mostly because her corner is looking a little junky with all of her toys, the swing, the tumble form chair, the vent, the trach collar and now the stroller so they're giving us more room... But it also means we're on the right path to getting OUT!

Yeah, that's all us. From the swing on the left to the blue and red chair up top on the right.

What a Day! May 6

Baby Girl you were WIDE awake and smiling when I got there this morning. I had two nurses stop me on my way to your bed to let me know they had already been to visit you and you were in the best mood! You took a lite bit of a nap between 9:00 and 10:00 which was good because the trach nurse had big plans for us today!

Yesterday, we reviewed the process for mobility (unplug that, unhook this, battery operated this, emergency bag that) and today: we took a walk! We went around the unit twice and you LOVED it! The PT went with us and she said that might be the best exercise for your neck because you were moving your head back and forth, up and down trying to see everything and everyone and not miss anything! 

We put your tumble form chair in the wagon so you were sitting up pretty good and could see - tomorrow we'll use the stroller (there was a delay in delivering it). The best part was watching you watch the fish - Dr. G let us go out in the lobby - you were absolutely entranced by the fish!

There are ao many people here who love you - it took us almost 20 minutes to walk around the unit twice because the first time around we had to stop at every other bed spot so the nurses could talk to you - and you just smiled and kicked and loved every bit of the attention!

After that adventure, we did a trach change that I got to direct - the trach nurse only did what I asked for assistance with and didn't say anything. I figured after all that you would be worn out and ready for a nap...and your eyes said you were... But when I got back from lunch you were still awake! You looked a little more rested so maybe you got a short nap in but definitely not as long as we thought you would sleep. I guess you were just too excited :)

They put you back on the trach collar this afternoon. Yesterday you were on it for 45 minutes with absolutely no issues! The trach nurse also wanted to try the speaking valve again since you did so well with it the first time. You're actually going through periods where you keep your mouth closed now, which is good, but it makes the vent go haywire because it's set to accommodate the leak from your mouth always being open. (The way this vent works is purely supportive - if the patient wants to breath it senses it and allows them a breath on their own, or gives them the pressure to make up the difference they can't provide for a full breath {if the breath is supposed to be a 10, but patient can only supply 6, it gives the other 4} so when your mouth is open, the extra pressure the vent is supposed to give to make up for the escaping air gets pushed back and makes the alarm go off like you're coughing or choking.)

It was a fun, exhausting day. Here's a fun video of you playing with Sophie before our morning adventure began!

Oh Monday... - May 5

Quick update before I crash for the night:

1) got back on the trach collar today...with oxygen. They started you out at 28% and got you down to 25% by the time I had to leave. Goal is to increase length of time on collar and off vent while weaning off the oxygen. We're still going home with oxygen but don't want it to be a mandatory thing.

2) Mama got more vent training...which will continue every day this week... I just love new machines with lots of flashing lights and numbers and important settings =/

3) tomorrow we're going for a ride! Hopefully the loaner stroller was delivered this afternoon because we have a big trip tomorrow...all the way around the unit! 

4) everything is flowing smoothly so far to get out on the 14th; we've got everyone (dr, PT, OT, ST, RT, home nurses, NICU nurses, pulminology staff, medical supply company) on board for our Monday meeting. The case manager is trucking along with approvals and requests (the latest being the decision that she needs a hospital style crib at home for easier access and ability to position better). 

5) Dr. C (new face!) who is a PT (head of therapy department??? Don't remember...) came and did an evaluation. We'll continue to see him as an outpatient as well.

6) you got some play time on the floor with PT and ST and loved it! Then you got to sit up in your tumble form chair and make sure the trach nurse was teaching me correctly... You were listening pretty closely!

7) you still love Sophie best :)

Catching Up! May 4

All right folks - sorry for the radio silence! It's been a crazy busy weekend. Here's a brief re-cap:

Friday: I didn't go in because I was chaperoning Big Big's field trip - we had a blast but came home exhausted!! When I called in that morning, around 9, they said she was still asleep - she's been waking up between four and five, hanging out and enjoying the visitors during shift change, and then crashing again around 7:00 until 9:30 or so. Crazy girl! She did mention they got her bed turned back around facing out Thursday afternoon (don't remember if I mentioned it but they put her in a bigger crib and the nurse forgot and faces her toward the wall Wednesday night!) and she spent some time in the swing.

Saturday: we got a new neighbor so Baby Girl had plenty to pay attention to! When we got there, Daddy went for basic trach training so we got our girl time in. We spent some time in the rocking chair, had some swing fun and played with the toys. When Daddy got back he watched us change the trach out, clean the site and he got to suction during all that - he did great :) After lunch we did trach CPR training which just adds a few steps in and went over the basics of setting up the vent. We'll do much more on that next week!

Sunday: we didn't make it over today because it took us longer to get home from services than we planned and we wouldn't have gotten to stay long before needing to be back to get sisters so I spent the day cleaning and re-re-rearranging the nursery and trying to figure out what all still needs to be done in there. It took me quite a while to get used to having everything in our room, but now it just seems so empty... I'm not looking forward to Baby Girl being all the way upstairs, but it is what it is! I called around 7:00 and they said she had a great day - was very smiley and happy and took good naps.

Please continue praying that everything stays on track for the 14th! So far, so good!

Throw Back Thursday - May 1

Remember that one day when Lexi didn't throw 73 curveballs at her medical team to keep them on their toes? Yeah - me neither.

Started out the day finding out they had to put her on oxygen last night - more than likely it was more of a ventilator issue that the nurse didn't know how to fix, but still.

Then I was told she wouldn't be able to go home until the week of Memorial Day because it would take about two weeks to get everything figured out and then the pulminologist would be on vacation and wasn't comfortable sending you home while she was gone. Dr. G laughed and said then we better get her out of here before your vacation then and she fast tracked the timeline... VERY TENTATIVE  discharge date is May 14. 

Why so tentative? Well one, because it's you and you don't like doing things by other people's plans. And two, all this HAS to happen before then:
-- switch home health providers (insurance nightmare)
-- select home health nurses
-- train home health nurses on your case and vent care
-- Dad has to get caught up on trach care training (in the middle of graduation insanity they want him to come in as much as possible. HA)
-- we both have to take a ventilator care class
-- get new equipment
-- room in with new equipment
-- home inspection to make sure it's a safe environment and we have sufficient electrical support 
-- relocate all of your stuff back up to your room (no I don't like the idea of you being upstairs, but it's better than the alternative...)

And in the middle of all that, ENT wasn't thrilled with the placement of the new trach after it's had a couple days to settle in so she switched it again - initially to one that we would have to custom order, but then said let's try another option first. So now instead of a neonatal size trach you're in a pediatric size; she's guessing that your skin webbing around the neck makes the trach path longer than a neonatal size will work with, which is causing it to not go into your airway enough, making it look shorter. So we're on a pediatric, longer trach now to see how that does. ENT also laughed when she heard end of the month so everyone is on board with getting you out of here in the next two weeks. Go team go!

So they made the call to the new company to come get started with all of the intake information so that we can get the ball moving on home health (supplies, equipment, nursing and training) and they came by right before the trach change issue.

And you didn't get a morning nap because of all of the excitement
And Mama didn't get lunch until she was driving home.
So between 10:00 am and 1:00 pm you went through two trach changes, three X-rays, one bronchoscopy, two new faces being introduced, vent settings being adjusted, and you got new boots because your feet got to fat for your old ones!

At least you got a good nights sleep last night... Oh wait, no you didn't. You stayed up late again, woke up early and barely got a nap before all the insanity started.
{Follow up from above} the alternative to you moving to your room upstairs is having a nurse on duty watching you sleep with me and Daddy trying to sleep in the same room - not happening. Since we're coming home with a ventilator we have to have 24/7 care, which means our family is fixing to do a LOT of adjusting! It might drop to just at night after everything gets settled in if you do well enough during the day to just be on the trach collar - we'll see!

So you get some rest while the rest of us try to move mountains and make stars align so you can come home!

Exciting Day! April 30

Today was a pretty exciting day! We got switched over to the home ventilator AND they came and measured for the Kid Kart AND you got to use your new swing!

When I got there this morning the nurse said you woke up at about 4:00 this morning and wouldn't go back to sleep, so they put you in your swing and you finally fell back asleep around 7:00...after all the excitement of the shift change of course! She also said that they put you in it yesterday at about 3:00 pm and that you just sat and watched everyone walking by (and stopping to talk to you) and smiled and kicked away until about 6:00 when you finally started getting sleepy eyes. But every time someone would walk by you'd perk back up in case you were going to miss something!

You're tolerating the big bows much better also :)

The goal with switching over to the home ventilator is that you wouldn't notice a difference in the support...but since they have different settings and parameters, and are not really meant for people as small as you are, it's not quite that simple. But after about 30 minutes of adjusting and testing and switching around and number crunching, we think it's finally about equivalent to what you were getting before - and it's much lower settings than they were anticipating. This is day three with NO OXYGEN and both Dr. G and the Pulminologist are thrilled with how well you're handling it. They didn't want to push too much today so you will stay on the vent only for 24 hours, then we'll go back to trach collar when you're wide awake and vent when you're asleep and see how that goes.

Watching your new toy after we made the vent switch - it moves, has lights AND sound! PERFECT!

I'm super excited about the Kid Kart!!! Here's the one that we're getting - they came and measured how long your torso is, your legs from the knee up and then from the knee down. The seat will be built to fit you now, but also to adjust for the next year or so before we might have to get a new one. These strollers are made by a wheelchair company, but designed to have the conveniences of modern strollers. It will have brackets on the back that fit with the vent we're going home with, it has a solid tray on the bottom for anything else we'll need, it will have an oxygen tank holder (just in case) and an IV pole for feeding bags. It will take a few weeks for it to come in, but they are bringing the loaner stroller early next week for us to work with mobility training and to bring home until your's comes in. Ignore the price on the page - I had a heart attack when I saw it first too, but that's something that SSI covers! BLESSING!

We spent some more time playing with your toys - you are much more interactive with them (when no one is around) and the PTs were thrilled when I showed them the video of you playing with the spinner the other day. Sophie continues to be the one you tolerate the most... when I sat her on your chest this afternoon you put both hands on top of her and looked up at me like you were saying "MINE!" Then you started trying to chew her face off until she fell down too far and you couldn't get her back to your mouth.

Play away Baby Girl!

Baby Steps forward - April 29

So I couldn't take pictures of the old trach...because it's gone (duh Mama!) but here are the product pics from their website:

Flextend - extends beyond the wings that hold the trach ties so that it's easier to access for suctioning and easier to clean around the wings:

Standard - sits more flush against the neck (no extra length beyond the wings):

The standard is a little more difficult to take care of and keep clean since your neck is already so small, but when has anything been easy with you?? The other problem with the standard is that when you're attached to the vent, the tubes pull the trach off center (look at the picture below) which pulls at the edge of your stoma and irritates it. With the flextend it gives us more room to situate the tubing and make it more comfortable. We talked Friday about ordering you a custom trach that's the right length on the inside, the right diameter and has the flextend - because right now (surprise, surprise) they don't make one with your specifications. Sigh.

Then this morning Dr. G said if it was ok with trach nurse and ENT she wanted the flextend back, and we'll just see how the length that we have does - so we switched it out again. Three trach changes in two days! Tomorrow the pulminologist wants to do a bronchoscopy again just to make sure everything is ok and (hopefully) put you on the smaller ventilator that we'll be going home with to start doing some trial runs. The trach care nurse wants to start doing some mobility training (aka getting you in a stroller with all of your stuff and walking around the unit) to figure out how everything will work best when we're out and about. ALSO - tomorrow the medical stroller company rep is going to come bring us a loaner stroller and measure you for yours so we can get that ball rolling! Depending on when you get to come home again, we might go home with the loaner while they finish up yours but at least that's moving forward! There are two different styles that I'll get to choose from - I got to see one yesterday and it was pretty snazzy! 

We turned your bed around so that the ventilator tubing is coming up from the bottom instead of over the top so that 1) it's not pulling as much on your trach and 2) you can get your right hand up to your mouth because you have not liked not having access to it! It's amazing how much one little change can completely turn your world around! You went crazy with the happy kicking - constant for about 15 minutes! 

So things are slowly starting to move forward again - you're doing great on room air (21% oxygen) so everyone is fairly confident that we'll be going home without oxygen; we're talking again about equipment testing for home care; the next step is just waiting for it to all come together and we can bust out of here!!! 

Patience, Mama - patience!

MRI Results - April 28

SURPRISE! The MRI didn't tell us anything useful. Well, not related to the sleep study anyway. Sigh.

What it did show was:

1) her brain stem is clean and clear from top to bottom;

2) her brain matter is equal and functioning fine on both sides;

3) there is a large subdural hygroma (fluid build up) on the left frontal cortex (approximately the front half of the brain) but it isn't causing any pressure or causing any other problems. It adds one more outpatient visit with a neurologist to keep an eye on it as she grows - but it doesn't give us any information.

We had a fun morning getting ready for the MRI - it included two trach changes (I took one out and put the other in). We also switched the type of trach we put back in - before she had what's called a "flextend" trach that added about 2-2.5" outside so that her chin wasn't rubbing against the trach. The ENT thinks that extra weight might have contributed to the issues on Friday by causing it to hang down more on the outside and causing the inside piece to not sit properly. So the trach we put back in is a "standard" trach so we can see if that makes a difference. I will post pictures of the two trachs tomorrow see you can see the difference.

They gave her one dose of a sedative before they took her to the MRI so that she would be calm and still - it didn't phase her at all. They gave her another dose when they got down there....nothing. She did lay nice and (mostly) still though so there were no issues with the images.

Play Time - April 27

The nurse was putting you in your tumble form chair when I got there this morning and you were pretty excited with all the people that you could see and watch from the floor! We played with the toy giraffe from Uncle B and Aunt K...you tolerate that one the most. The ST would really like to see you start putting something other than your hands in your mouth for a variety of textures and to get you used to moving your tongue around different shapes and sizes but you're not as interested in that as she is. You can almost get your hands all the way around Sophie's leg though so you don't immediately drop it when we let go like with other toys.

You were pretty sneezy this morning - but it made for some cute pictures :)

You got a good nap in over lunch and then we played a little bit more - you figured out how to work your spinning toy - and then you were falling back asleep when it was time for me to leave.

Tomorrow should be an interesting day - you've got your MRI in the morning so we have to do a trach change (your regular trach doesn't work with MRI machines); we have to explain what happened on Friday to Dr. G and figure out what we're going to do about it; and get a new plan going to get out of here!

Easter Pictures!

Here are a few of our favorites from the Easter picture session with Nanny:

One of the few of you actually looking at the camera...but definitely not smiling!

Eh...a little bit of a smile, you still weren't sure about this whole photo session thing!

You were more interested in showing Nanny how both fists really CAN fit in there at once!

This one is my favorite!

Back to chewing on those hands!

This was close to the end when you started being a little stinker...

Annnnnnd we're done!

Not bad for using the PT support chair and really bad hospital lighting :)

Hey look, another parade! - April 26

Dr. P and the nurse both said you had a great night as soon as we came in today. They kept a close eye on you last night and said there were a couple of times you would start coughing / gagging again but it wasn't nearly as intense or as often as yesterday - it didn't even wake you up! There did seen to be something still bothering you today though so not sure if that's just left over irritation or if the trach is still rubbing... We'll find out Monday!

Other than not liking the ventilator tubes being in the way of your hands, you were super happy and energetic today - kicking your feet all over the place and waving your arms. You were really happy to see Daddy and just kept staring at him for about five minutes when we first got there.

We had to leave a little earlier than usual for a Saturday because tonight in another parade and we didn't want to get stuck in the parking lot! Sleep well Baby Girl - we love you!

You had a pretty rough time waking up this morning...it took you about 10 minutes of stretching and kicking before you decided to finally wake up :)