Lots of PT last week, each day a little better than the last.
Thursday, she was cleared to stand AND clear to start working on walking AND cleared to start making plans to go home! As long as nothing major happens before our appointment this Thursday, we'll be headed out first thing Saturday morning!!! The incision from her first surgery hasn't fully closed yet so we are still keeping an eye on that but it had made a lot of progress and Dr. F was happy with where it was at.
So of course, at Friday's appointment we got busy with standing! She was a little nervous at first but absolutely rocked it...and then wanted to practice standing on Saturday and Sunday also 🥳
Today, things just kept getting better and better: SHE TOOK STEPS!
Here's looking forward to 4 more days of hard work and then HOME! This Thursday we'll do some final imaging to make sure everything looks ok, her legs are even and there are no other concerns. I'm sure we'll have some follow up appointments to come back for but we're looking forward to getting back home for awhile.
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.
May has completely slipped away from me - and now I'm almost 3 weeks behind on updates.
The first week was super crazy busy because we had Focal Point at the church building and I went to help work the registration desk every day. I didn't realize how much I has missed being there last year when you were still in the hospital! You stayed home Monday and Wednesday for your therapy sessions, but you got to go with me on Tuesday and meet a LOT of people who have been praying for you and watching you grow over the internet. We also had a sweet family come have dinner with us that day - they had stayed with us two years ago during Focal Point, when you were still the size of a piece of rice. We had just gotten our first sonogram images when they were here last! We also went to dinner on Wednesday evening with one of my good friends from college and his wife. We don't get to see them nearly often enough considering they only live a couple hours away! So that week flew by and I'm sure you did some super cute things that I don't remember and some really awesome things that I wrote down somewhere else. Here are a couple pictures from that week:
Learning how to write with OT
You had a blast with this gift bag :)
We left Thursday as soon as Daddy got home and went to visit Nanny and Grandpa in Midland for a few days. Nanny has been asking when we could come down to meet all of her teacher friends that have been following along and praying for you also, so we figured Mother's Day weekend would be a good time to make the trip! We went visiting at the school Friday, then we took an unexpected to trip to Lubbock to get a power cord that Mama forgot (feeding pumps require power...) so by the time we hit the road Saturday, you were DONE with the car! We had to stop several times on the way home to get out and walk around and give you a break from the car seat!
The next week (last week) was just as hectic but not in an as exciting way...
Monday, you were still super cranky from the long trip and didn't want to do anything. Which was ok with me because I wanted / needed a nap too, but you still had speech therapy.
Tuesday, we went grocery shopping and then you got a short nap before we headed for your weight check. Despite the fact that you have been eating CONSTANTLY (it seems like) you lost weight. You went from 19 pounds to 17.8 pounds. And when they went back and looked, you've been on a downward trend since the middle of February. When the scale showed the reading, Nurse T and I both just looked at each other and our hearts sank. Then you stared to get really cranky because your nap got interrupted so we were all just done with that appointment. They switched you off of 2% milk and sent orders to our medical supply company to send us Pediasure... which we're REALLY hoping insurance will cover. When you first came home, they wouldn't cover the formula to fortify your feedings because it wasn't the primary source of nutrition (the breast milk was) so hopefully that won't be an issue this time. If not, we're looking at doubling our grocery budget for this stuff. Not a good way to start the afternoon. It pretty much went downhill from there - issues in sister's karate class; leak in the washing machine fill hoses; huge hole in the dryer vent duct (which I only found pulling the machine out to mop up water); totally forgot I had a conference call.... one thing after the other on Tuesday. Not a good day.
Wednesday was a little bit better. I was cranky after a trip to Lowe's and some handyman work; you were still super cranky and just wanted to take a nap. You didn't want to do much with OT and as soon as you heard the PT's voice coming up the stairs you started crying. After dinner though, we celebrated ONE YEAR of you being home! It technically wasn't until Thursday, but Daddy had to work late and sisters wouldn't be home so we ate cupcakes early. I had planned on making you another big cupcake like we did at your birthday party because you don't mind stuff on your hands now so I was hoping to finally get some smash cake pictures...but I totally forgot. So I ran to the store and grabbed the first cupcakes I could find. The icing was a little too hard to play with, but you didn't have any problem digging in to the cake! It wasn't quite the smashing mess I hoped, but it was better than nothing :)
Testing the waters...
The inside has yummy filling!
Big bites!
That helped improve the week slightly - but Thursday you were back to your cranky self again. Your PT wasn't able to get any work done with you because you just cried the entire time. She has suggested having someone new come work with you, hoping you will react differently to having a new face around. Her first day will be tomorrow so we'll see how that goes! Friday was another lazy day, which was good because it rained ALL day long!
Saturday, we had a karate tournament for Little Big to go to, came home for a quick lunch and nap for you, then off to Big Big's end of the year band concert. You absolutely loved the music! You were a bit whiny between the songs, but as soon as they started playing you just sat and stared. At one point, you actually started dancing to the song they were playing and clapping your hands. We got back home and I figured you would take a nap, but you didn't. We went on a walk with Daddy after he got home from graduation and then you were ready to crash.
Sunday was the usual: short nap during church services, cranky lunch, long afternoon nap and then you slept like a rock all night. One benefit that we found to the switch to Pediasure is that it doesn't have to be refrigerated, which means I can put the entire amount for the night time feeding in the bag at the start and not have to add more at midnight and 3:00 am which means I got to sleep most of the night too! Woohoo!
Anyway, that catches us up to today. We're getting closer to your sleep study and hopefully closer to getting rid of the trach. It looks like the g-tube will be a little bit more tricky though. Keep working hard and keep making progress! Mama will eventually learn how to be patient :)
We are slowly but surely working our way into a routine that allows for enough time to get everything taken care of!
Mondays will be our "fresh start" day - we change out equipment parts, tubing, sensors, filters, canisters, etc. Today was our first trach change at home and everyone survived! Got all of the supplies restocked for the week and made sure we were ready to go!
We've set aside some time for you to come downstairs and be with the family so every day when sisters and Daddy come home you are ready and waiting for some attention! You got some one on one (plus nurse) time with each of your sisters today so that was neat to see. Little Big actually (politely) kicked me out of your room because she "needed to talk to you about important stuff".
We didn't make it out for a walk today, but we'll make up for it by going on an outing tomorrow and Wednesday - we've got a pediatrician appointment tomorrow and an appointment at the High Risk Infant Clinic in San Antonio on Wednesday. Busy, busy week!
Tonight they weren't able to schedule anyone to work (still working out the kinks in scheduling) so Mama is on her own! Sleep good and don't give me any trouble please :)
We move you downstairs this morning to hang out for a little while so that Grandpa and I could put a dimmer switch on the lights in your room. You still love being downstairs, but you got sleepy pretty quickly since you had been awake since about 7! You refused to go to sleep though, and were fighting it SO hard!
Then you started talking to Nanny again...trying to get out of sleeping still...
A little while later, Nanny got some of your conversation recorded:
Technically, you should not be able to get any sound out at all because the trach is positioned below the vocal chords so the air goes in and out without passing over the chords. You've got such a large "leak" from your mouth being open most of the time that they have to accommodate that with some extra pressure from the vent so if you are positioned just right or holding your mouth more closed than usual some of that extra pressure will go up over your vocal chords allowing you to "talk". It's pretty neat to hear after so much time without hearing anything from you!
When sisters got home this evening we went for another walk and stopped by to see Aunt C and the boys (and the dogs). Then they got to help with bath time and getting ready for bed. It's so good to finally have our whole family under one roof!
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!
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 :)
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!
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!
