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!

Test Results, Costumes, and Tantrums - Nov 5

Being two years old must be much harder than any of us remember... at least that's what you need us to think right now to justify the amount of attitude and tantrums that you have been having lately. Fortunately, they are short lived and just include you screaming (for about two seconds) and crossing your arms. Usually in response to someone asking you to put your toys up or if you want to get in your stander. At this point it's still comical, but you have had a few that require you to be put in time out. You weren't a fan of that.

We got the sleep study results back from the October 14 sleep study last week, but I haven't had an opportunity to write about them yet. Bottom line: you didn't do as well as they hoped, but it wasn't awful. You had a significant enough increase in apnea episodes with your trach capped (completely blocked off) that they are concerned, but not enough that they think you need to be back on the vent at night. So, good news and bad news. You will go back to using an HME at night (a filter that allows you to breathe through your trach and provided moisture) so that you have some extra breathing room; this has proven to be a bit of a challenge because you aren't used to all of the extra moisture and haven't adjusted to that yet. The extra moisture causes secretions to increase, which means you have to be suctioned more, which also increases secretions because it irritates your airway (vicious cycle). So far, you've only had to be suctioned once because you've been able to cough and clear all of the secretions.

Right now, we've got a bronchoscope scheduled for February 16 to take an internal look and make sure there is no extra tissue growing or anything blocking your airway; the next sleep study is scheduled for March 24. My job between now and then is to get the pulminologist (who thinks the apnea is caused by your anatomical structure - which isn't likely to change between now and March) and the ENT (who says there is nothing we should be doing between now and then) to agree on SOMETHING we can do or try, otherwise the results in March will not be any different and we'll be right back in the same boat and delaying decannulation even longer. Quite a task for Mama to take on.

In other news, you were the cutest little Dorothy ever (I say that with 100% bias because I know of at least four other little girls we know who were Dorothy and I'm sure their parents said the same thing to them) and you had such a great time at the Fall Festival this year! You even let Big Big's friends take you and play with you some so Mama got a chance to take a break :)

You also had a great time watching all the kids come up to our house to get treats - although some of the costumes you were a little unsure about... You wanted some of the toys we were passing out and seemed particularly enthralled by the finger lights and glow sticks!

Last thing, we pulled out this old toy to give back to the PT who brought it to us so she could pass it along to another patient and you have played with it non-stop since we got it out! Guess we need to start doing that with some of your other toys so that they can be "new" again too :)

"Official" Test Results - Sept 19

So we went to our appointments on Thursday, got the "official" sleep study results, went to your weight check, and left with smiles on our faces :)

Here's a little side-by-side comparison of this sleep study with the last one in June...

There are links in the last post to what the big words mean :)

Needless to say, both the Pulminologist and the Sleep doctor were THRILLED with the difference. Who knows if it was the congestion, the sleep tech, the equipment, or what in June - but here we are. We officially downsized your trach back to a 3.5 on Friday, and the cap is back on! You haven't had any trouble so far (it's only been two days) and slept just fine last night so hopefully you can keep it up. The next sleep study is scheduled for October 14 to see how you are doing capped and off the vent - then we'll talk timeline for removal!

I mentioned to the pulminologist that Shriner is waiting for the trach to be gone before they consider the foot surgery, and that it would be great to go back in November without the trach. Her response wasn't promising - but maybe we'll at least have a timeline by then to be able to get things rolling. (Her main concern is taking the trach out before winter really sets in, just in case you get sick and need the support - understandable but BLAH!)

After that appointment we went over for your weight check - you've gained an average of 6 grams a day since we were there last. Not stellar, below average, but it's still an upward trend. We talked with them about the milk allergy and they've switched you to a different formula that's made without any dairy whatsoever. The good news: you seem to be tolerating it well so far (again, only day 2); the bad news: Mama gets to wash bottles two times a day (day and night shift) and measure formula and it smells. I'll manage :)

To offset the barely there weight gain - you grew 8 cm (about 3.14 inches)!!! There have been several comments made in the last month or so about how tall you were looking, but we just attributed it to the fact that we got your leg braces, and they're already making a difference in how straight your legs are. Apparently, you did some growing too!!! The dietician didn't believe it at first and asked them to remeasure, but sure enough - 8 cm!

So the last two days we've been floating on happy news - Daddy was home with us all day yesterday (unusual for a Friday!) and you enjoyed getting to spend some time with him. Today we've been lazy - you did some playing, took a nap, played some more and spent some time in your gait trainer. You really love being in that thing - and usually head straight for the back door to look outside!

So this afternoon we decided to go try out the new patio that Grandpa, Daddy and I worked so hard on! It was mildly successful -

Right after this, you backed up too far and hit the downward incline on the edge and it sent you rolling into the grass...you weren't too thrilled about that :( I had just gotten you calmed down from that when you backed your head into the table I had just moved outside... we were done with walking for the day! On the plus side, we got the gait trainer adjusted so that you can't lean back so far anymore and it's really making a difference in how well you're able to move your legs and propel yourself forward!

Keep moving forward - we'll get you a mirror for backing up!

Lots of Happy Things Here - Sept 14

So I would love to be able to blame not posting in so long on the fact that we've been busy with back to school stuff....but that wouldn't be completely truthful :)

So here's what's happened in the last 3 weeks:

If I had posted on August 27, I would have talked about how awesome you did in your new boots the first week and how being in the leg braces at night didn't even phase you! They had initially told us we might have to wean you in a couple of hours a night, but you took to them with no problems and didn't even move the first night they were on!

I would also have talked about how hilarious your face looked when you got to the top of the stairs and realized that there was a gate in your way now...you were not pleased. But it has turned into a fun game of throwing balls down the stairs and watching them bounce ally the way down.

The last thing I would have talked about is finding a super cute Halloween costume for you, but I wouldn't have said what it was :)

If I had posted the next week, on September 3, I would have talked about how you don't like throwing things down the stairs as much anymore because your therapists made it into a standing "game" that you don't enjoy near as much! I also would have complained a little bit about how BIG you look standing at the top of the stairs!!!

I probably would have also mentioned how much you have enjoyed your new found freedom to "roam" the upstairs and how gracious Sisters have been in letting you explore their rooms (for the most part)

Last Thursday, I would have talked about how we had to take you in for you 18 month appointment (only a few months late...) because I had to talk to the doctor about something and realized that we never scheduled your 18 month appointment because your doctor was out of town, and then we were, and then she was.... and how unhappy you were with the two shots you got. We were also finally able to really talk to the doctor about your allergy test results from June. Your overall allergy indicator was normal (meaning no allergies) but you have a slightly elevated (2 out of 6) indicator for cow's milk and egg whites. Confusing test results for you? Shocker. So your pediatrician would like for me to talk to your nutritionist and GI doctor about switching you off of the PediaSure (yay! and nooooo more changes!) onto something that has no milk in it. Her thought is that there are several things that might clear up with this: 1) I was never on a dairy free diet when I was pumping, then you went straight to whole milk then onto 2% because it upset your stomach so much... switching to something with no milk whatsoever could help clear up the constipation issues you've always had. 2) You've had a perpetual rash around your g-button and bottom that could potentially be caused by the milk allergy; and 3) since it's such a slight allergy, it could be contributing to the amount of phlegm you've always had. We shall see.

But I would have countered all that news with the fact that your leg braces are already making a huge difference - we had to adjust your stander because there is already a difference in how straight your legs are! I would have posted this picture that shows you standing BY YOURSELF and talked about how excited we were that you stood for almost an entire minute before you realized no one was holding you up!

I also would have talked about getting the most exciting phone call on Friday - your gait trainer was ready!!! And how that was perfect timing, because we had already made plans for Grandpa to come help us turn our front "garden" into more of a patio so you could join us in our inclined front yard without having to worry about you rolling down the driveway!

I would have also talked about how excited you were when the gait trainer actually got here!!! And how quickly you took to it... kind of. You were not wanting to get in it at first, and then you slammed your feet down like you were stomping and it made you move. You froze. Then got a big smile like you remembered what this was for!!!

But then about 15 minutes later you were an old pro at it :)

You've done really well - you've stayed in it about 30 minutes each day since we got it before you start getting tired of it.

I also would have talked about how nervous I was about your sleep study that night since you had been congested and coughing for a little over two weeks. It's almost like you knew that it was time for another sleep study and got sick... Maybe I would have even waited until Friday so I could post this picture of you and talk about how much more patient you were with the sleep lab tech in getting everything hooked up, and how it didn't take them nearly as long this year. But then I also would have had to mention that I had NO IDEA how the results were going to turn out because you kept coughing stuff up out of your trach and into one of the sensors so they had to wake you up every hour to change it and you did NOT like that; and how I was not looking forward to waiting a week to find out the results.

So that's what all I would have said if I had written each of those posts...Why am I posting today you might ask? Because today your pulminologist called. She is usually the one that gets to deliver the bad news (She has an underdeveloped lung; she needs a trach; she'll be going home with the vent; her sleep study results were invalid/ inconclusive/ confusing/ really terrible...) so she wanted to call and give us some GOOD NEWS:

Your sleep study went REALLY WELL! They want us to reduce the size of your trach again, go back to capping it at night and being OFF THE VENT, and that the sleep doctor has reserved a spot on the October schedule to repeat the study with the trach capped off to verify that the results from the June sleep study were a fluke and that you're ready to be off the vent and the trach come out!

I am SO glad she didn't make us wait until Thursday to find all of that out :) Sisters and I decided to celebrate when I picked them up from school!

So now this Thursday I can give some good news from them, and hopefully some good news from your weight check and visit with the nutritionist about the allergy issue.

18 Months and Test Results - June 21

First off, how is it possible you're already 18 months old?!?!?! I feel like I start all of your monthly updates with that statement, but each month it is even more true - where does the time go???

I've been putting off writing this post 1) because I'm in denial that you're actually 18 months old and 2) because sharing the test results from the last couple of days makes them even more real and I'm still not ready to acknowledge that. So here we go...

Your sleep study results were not good. And they weren't bad. They were "really awful" as the pulminologist said. She felt a little better after we had explained that you had been sick for a couple weeks with allergies / a cold (no one will agree what to call it but anytime a storm comes through you start coughing, sneezing, congestion sets in, etc. and you got suck right after Memorial Day....) and that you were still super congested. BUT, she said that even if we repeated the study while you were feeling perfectly fine and you got great results, knowing that a simple cold gave you such awful results, she wasn't comfortable with the trach coming out yet.

Here are the "highlights":
- You slept for 400.5 minutes out of the 462.5 minutes recorded;
- You never reached REM sleep; most of the time (49%) you were in the second level of sleep;
- You had a total of 35 obstructive apneas, 492 hypopnea episodes and 417 desaturations.

Her recommendation was for you to move back up to a size 4.0 trach so that you could go back on the vent at night. Needless to say, I was extremely disappointed. And I cried. On and off for most of the afternoon. The pulminologist is going to visit with the geneticist to see if there is any research linking sleep issues with Escobar Syndrome, but since there is so VERY little information about Escobar to start with I'm not anticipating that being very helpful. The main problem is that they still aren't sure what is causing the apnea events to occur, so they don't know how best to go about fixing it. So the trach stays.

We got back home and I had to go dust off the ventilator and hook it back up. You kept looking at me and the machine like "why is that on!?". 

Friday morning when I got you out of bed I noticed that your trach wasn't sitting quite right. It was off to the side from the vent pulling on it, but it had also come out about 1/8 of an inch...and wouldn't go back in. So I pulles it out to try to put a new one in - wouldn't go. So I tried a smaller one. Nope. So we loaded up early and headed to the ENT office. 

First thing she said: So Lexi didn't agree with the test results, huh?

It took a little while, but she was able to get a 3.0 in, and then a 3.5 (which is what you'e had in). We'll go back next Monday to upsize you to the 4.0 - she didn't want to push any further with upsizing you that day. Needless to say, that's not how I planned on starting the day - but just like last August, you didn't seem one bit bothered by the fact that your trach was out. Sigh.

We finally got things calmed down from that appointment in time to get you a quick nap and then heas to your pediatrician's office for that appointment. The pulminologist wanted us to visit with her about some of the medications and doses you were on. That appointment led us to a clinic to get blood drawn for allergy testing. Hopefully this will help solve the you have allergies vs not old enough to have allergies debate so we can get what you need to get rid of the allergies/non-allergies.

Whew!

So it has taken me four days to write this post because we left Saturday for EYLCamp and have only had about 5 minutes at a time to write little snippets at a time. You've done so good so far at camp this week - you've mostly been pretty happy with all of the new people and loud noises so far. You have a new friend that you have been SO SWEET playing with! You have started signing "baby" every time she gets brought into the room and reaching for her because you want to hug her or play with her.

You've also gotten to play a lot with Nanny and have just about mastered your shape sorter without even looking at the blocks. You've also learned the hand motions to all of The Wheels on the Bus - but you refuse to do most of them for anyone but Nanny. You have shown off most of your other skills depending on how many people are in the room :)

On the 18 month update side of things:

You've learned a couple more signs this month (baby and help) and can now point out your mouth (separate from teeth and tongue), knees and we're working on elbows. You've also started pointing to things on other people too and learning the difference between "your" or "Lexi's" eyes/nose/ears and "Mama's" or "my" eyes/nose/ears.

You've also started really clinging to Daddy a lot more and absolutely LOVED your shirt for Father's Day - anytime you saw me or Little Big you got SUPER excited and started signing DADDY!!! When you first saw your shirt you grabbed it and gave it a HUGE hug :)

You are doing so well Baby Girl - we'll keep doing things on your time and Mama will starting working on that patience and expectations thing again.

Happy Dance Time! - April 3

What a crazy week (on top of a crazy month) it has been! And guess what, things aren't going to slow down for a while now!!!

After the exciting ENT visit last week, getting your airway evaluation scheduled, and taking care of some other things on Friday, you and I headed to the EYL planning retreat to get ready for Camp this summer! We had a great, but busy, weekend and you did pretty good - aside from not taking very long naps (and not at all on Sunday!) and getting super cranky and clingy as I was trying to get all of our stuff packed and loaded. We got home Sunday around 5:00, it took me almost 45 minutes to get all of your stuff set back up because you WOULD NOT let me put you down and then I put you in bed for your 6:00 feed and you were out by 6:15. Whew! Overall, it was a really good trip and we got to see some old friends and had lots of fun :)

On Monday, you had your 15 month check up - everything looks good! You are low on the charts for weight, but you always have been. You are nowhere on the chart for height, because we've never been able to get an accurate measurement with your legs straightened out (and you especially didn't want to straighten them out on Monday!). She was excited to hear that the ENT is ready to start weaning you off the vent as soon as the Pulminologist gives the thumbs up! You did have to get two shots, but then the nurse gave you a new rubber ducky so you were ok with that.

Tuesday morning, we went and took more pictures with Aunt C. Here are a few that I snapped of the process - I can't wait to see the real shots!

We got back from pictures in time for you take a nap (which you didn't) and then head to the Pulminologist office...where you got 5 more pokes. You had to get your last round of Synagis (RSV prevention) and they had to take blood and weren't able to get a good stick on your foot so that took three times. Needless to say, you were not to thrilled with that process. And you were tired. And didn't want anyone but me to hold you. We left the office with semi-decent, ok, good, great FANTASTIC news -

Tuesday night we started the process of weaning you off the vent at night time!!!

Here's the plan:
- Starting Tuesday: one week of the vent being on bi-pap mode (similar to when we started weaning you during the day time; we turn the settings to positive pressure only, no breaths - so if your breaths dropped below 20 per minute, it would not kick in for you); the night nurse will be carefully monitoring your O2 level (so far you've stayed 97-100%) and your breath rate (normal!)
- Next Wednesday morning: airway evaluation; clean out your ears and possibly (probably since your last infection is now on round three of antibiotics and being too stubborn to go away) insert tubes; talk with ENT about downsizing your trach.
- Starting Wednesday night: NO VENT at night. We will have to use the trach collar setup (that you hate) to make sure you are getting enough humidification, but NO VENT! At some point during this part, we will downsize your trach. This will allow for more air to pass around the trach so you can get used to breathing on your own, while it's still there if needed.
- Mid May: we cap the downsized trach so that you are not breathing through it all. This get you used to breathing on your own, through your mouth and nose, with no assistance from the trach.
- June 7: Sleep study
- Shortly thereafter: (pending good results) DECANULATION. NO MORE TRACH. DONE - GOODBYE - ADIOS - Throw the vent out the window!! (ok maybe not that last part...)

If everything goes as planned (and as the ENT mentioned, Lexi never does anything as planned) you could be done with the trach and vent in less than three months. The original prognosis was two to three years, and you could be getting rid of it in 13 months. Talk about not doing things as planned!!!

We have some other appointments scheduled throughout the process (Nutritionist, Developmental Clinic, new boots from Shriner) but the next months will be focused on a HUGE leap forward!

It's Almost Here - Dec 19

In 12 hours you will be one.

One year ago, I was getting checked into the hospital for what would end up being the longest, most terrifying 12 hours of my life.

Tomorrow we will celebrate you. All that you have done. All that you have learned. All that you have overcome.

One year ago, we did not know if this moment would come. But it has. And as many times I try to say it's not happening, as much denial as I might be in (and continue to keep myself in) you really are turning ONE YEAR OLD!

You have proven, time and again, that science doesn't know everything. You have proven, time and again, the power of prayer. You have shown everyone that "supposed to" and "not supposed to" are just sayings. You have shown us that chances and odds have two sides - and you have been on the top side every time.

I am SO very proud of you and how hard you have worked over the last year. You have learned so much and continue to surprise us every day with the things that you are still learning and working toward.

Medically speaking, you are leaps and bounds ahead of where all of the specialists expect you to be. Your weight gain has been right on track for non-medical babies - which continues to surprise the dietician at every appointment. (You're "supposed to" be below the curve and not gain as fast because g0tube babies have a hard time keeping up).  They adjusted your feeds last week so that you are getting a larger amount during the day and less at night so you can start to adjust to waking up hungry. The speech therapist is happy about that because your swallow strength has stalled - mostly because you wake up full and have no interest in eating. We go again for a swallow study in February and will hopefully get clearance to start you on soft solids. Your EIGHT teeth show that you're ready for chewing on things.

Your lungs are doing so well and you are now spending all of your awake time with absolutely NO ventilator. Even during naps, the nurses have let me know that your breathing is staying steady and strong. (Babies with apnea issues aren't "supposed to" be able to breathe on the own while they're asleep). The pulminologist didn't want to change anything at the last appointment as we head into winter months and just said we need to stay focused on keeping you healthy over the winter. The ENT was pleasantly surprised to hear that you have only had two ear infections so far. Apparently, that's unheard of trach/vent babies! (You're "supposed" to have them fairly often because the fluid doesn't drain off of your ears the same way).

You PT and OT continue to be overly impressed with how quickly you learn new things and understand what they want you to do. Although you have learned that pitching a fit will get you out of (or at least shortened time) with some things... You LOVE to practice standing up and playing in your jumper. You can push yourself across the floor with your legs, but still don't like putting a lot of pressure on your arms or elbows so aren't really crawling. But you can move. Your hands and fingers have gotten so much more flexible and the range of motion you have in your legs is amazing.

You still haven't found anything you don't like to eat but sweet potatoes and butternut squash are still your favorite. You really like for us to mix carrots and apple sauce together and now won't either of them on their own. You've starting munching on teething cookies in the last couple of weeks. It took you a few days to get used to the texture and having a chunk of something in your mouth (the first time you took a bite and it came off in your mouth you had a mild panic attack trying to get it out!) but now you love feeding them to yourself.

You now sign "more" and "finished" all the time - and about 95% of the time appropriately. You also sign "up". You kind of dropped off on signing "eat", but will now click your jaws together when we say eat. We're working on learning to sign "Mom" and waving hello and goodbye.

You are still one of the most good natured babies and love getting peoples' attention so that you can smile at them or play shy. People with glasses are your favorite, especially if they are close enough for you to grab their glasses. Peek-a-boo is your favorite game still but lately you've gotten really good at rolling balls. You love music and will often times start dancing, even when there is no music playing.

You click your tongue, blow raspberries, and give kisses. You blink your eyes whenever we ask where your eyes are and sometimes will scrunch your nose when we say "nose".

You are loved and you love others.

I am so, so proud of you Baby Girl. I can't believe it's already been one year, and at the same time it seems like you've overcome a lifetime of struggle in that one year. Keep going.

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.

Fiesta Friday - April 25

Let me just start off by saying that I love parades - really I do. But whoever planned the Fiesta Parade route needs to be shot in the foot. Whatever made you think it was a good idea to cut off a hospital entrance for a parade??? And whoever decided to allow the school buses to park on the other side of the hospital needs to shot too. Now that that's out of the way...

We've had an eventful Friday! When I got to the hospital, Baby Girl was awake and off the ventilator - YAY! Dr. G decided instead of being on the ventilator continuously this weekend, she wanted it only when you were sleeping. That was the initial plan / proposal anyway: ventilator when sleeping to help give your lungs support and minimal assistance during the day. So yesterday's plan was out the window by this morning: trach collar when awake on the lowest possible oxygen level and ventilator when asleep with the lowest settings needed to still give you a good break. She also changed the breathing treatments to be as needed - you were getting them every 12 hours but weren't having any issues so she changed that up too. 

Then at about 8:30 you started coughing a little - you were sounding wheezy so we called the RT and we went ahead and gave you your breathing treatment. You kept coughing, but it turned into more of a gagging cough. I suctioned you a few times but nothing was coming out and you had this look in your eyes like "something is wrong". I wish you could use words, but am SO glad you speak so clearly with your eyes!

We called RT back and she wasn't sure what to do so she called the trach nurse who suggested we do the normal trach care so she could see if it looked like anything trach related. We couldn't see anything out of the ordinary, but she said your breathing sounded a little diminished on the left side so they ordered a chest x-ray to look at your lungs. Nothing there. They called ENT but she was off today and didn't answer; the ENT on call said: keep an eye on her until Monday. Thanks. Then your ENT called back, we gave her the run down and she said she'd be in as soon as possible!

This is where the whole parade thing comes in to play. DOCTORS NEED TO BE ABLE TO GET TO HOSPITALS!!!! You were extremely irritated at this point and couldn't stop coughing / gagging. The trach nurse and RT put you back on the ventilator and that seemed to help some but not completely. When ENT got here (sorry to the police man directing traffic she almost ran over - you really shouldn't stand in the middle of a hospital entrance) she did a bronchoscopy (small camera into her airway to see everything) but didn't notice anything out of the ordinary. She looked at the x-ray and noticed that the trach tube looked a little off.

For whatever reason (surprise, surprise - you're doing something no one can explain) the size of the trach tube is all of a sudden too small and instead of curving down like it's supposed to, was just sticking on the back of your airway. So when you breathed too deeply, or moved your head, or when we were doing the trach care and shifting it around it was just rubbing and rubbing and rubbing on your airway :(

So after several attempts, they got a larger trach tube (bigger diameter and longer) in, got an x-ray and seem happier with how it looks. And you were back to your happy, smiling, cheerful self within five minutes. You loved all the attention around your bed, but when I was finally able to come back over there I took your hand and you would not let go. You kept looking at me until you finally fell asleep - exhausted from all the craziness and not getting a morning nap because you kept waking yourself up coughing.

That was all between 8:30 and 2:30. And I'm drained. You certainly like to keep everyone around here on their toes!

In other news, Dr. G wants to do an MRI on Monday of your brain and brain stem. We've never done one of those and she wants to see if maybe they were getting some false positives on the sleep study, or if anything else is going on with your brain that could cause the sleep study to read so differently than your normal sleep habits. You didn't have any problem adjusting to quiet and dark when you were home for two weeks so they don't think that's as big of a factor; you slept, just had a lot of episodes. So more investigating is being done as to why it was such an "off" night. 

Hopefully we'll have a much more quiet, restful weekend and we'll see what Monday brings!

Confusing?? - April 24

"So the sleep study results are...confusing." That's almost as fun to hear as "inconclusive".

Here's what they gathered from the study:

During the sleep study you had "significant apnic events and desaturations" with just the trach collar. But you've not had them in the NICU since the tracheotomy. They tried putting you on CPAP and on BiPAP (read about the difference here) and there were still several concerning episodes. Which hasn't happened in the NICU. So why are they happening in one place and not the other? They don't know.

The more important question is why you're having the events to start with: are you not able to take a deep enough breath because of lung capacity issues or because you aren't able to fully expel the last breath, causing your breaths to get more and more shallow. To (hopefully) figure out which it is, they've put you back on the ventilator for the weekend. You're on the lowest settings you can be for both pressure and oxygen and they're going to play with the levels of both over the weekend to see which you respond to best with adjustments. Worst case scenario: they don't figure anything out and you go home with oxygen and either the ventilator/CPAP/BiPAP for support while you're sleeping and/or 24/7 (I vote no for that option). Best case scenario: they're able to completely wean you off of the oxygen and any needed pressure support because you perform fabulously while you're in the NICU. 

We shall see.

You weren't too thrilled with going back on the ventilator. The RT said when she came and started messing with the set up and hooking everything back up you got a real nervous look in your eyes and started moving your hands around and then tucked them in close under your neck. When I got back after they had you all set up you were holding your hands like you had been nervously wringing them and looked at me like "what's going on? Why is that thing back???"

Sorry Baby Girl. Let's have a good weekend and get rid of it, ok?

In other news: I put a tube in your throat today and didn't freak out (externally) about it! The trach change went well - and we plan to do one next week on Monday and Wednesday for practicing purposes. And next Saturday, Daddy will be at the hospital to get some basic training on suctioning, trach CPR and to watch us change the trach out so that he at least knows how the process goes.

PT and ST came and played with you and you loved the attention...as usual! You smiled and wiggled around and started kicking your legs when they were talking to you and working with you. Tomorrow we'll work with the speaking valve again - I'm excited to get to hear you!

That's all for now. Still no real results and still no plan or timeline for discharge. Tomorrow is a new day and we've got big plans, as long as I can get through the Fiesta Parade traffic!