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.

THANKSgiving - December 9

Yes, Thanksgiving was two weeks ago, but (once again) I'm behind schedule!

We had a great first Thanksgiving with you! We went to visit Daddy's family and got to meet lots of people that have been praying for you for a long time. We didn't get to go see everyone last year because my doctor didn't want me that for away from home when we didn't know when you would be ready to join us. You spent the entire trip looking out of the window and talking to Little Big...but of course when I tried to video it you looked at me and stopped talking. Stinker. You had some fun playing with Aunt C and cousin L1.

On Saturday we had Thanksgiving dinner with Grandpa, Nanny, Uncle B and Aunt K. You got your first taste of whip cream and LOVED it :) We had a busy day and you enjoyed every bit of it. You showed off all of your new tricks, gave lots of fives and scooted your way across the floor to give Nanny and Grandpa a show!

We put up the Christmas tree and you have loved playing with a couple of the ornaments. You are pretty fascinated by the lights but are not a huge fan of how pokey the actual tree is.

We have a pulminology appointment tomorrow and weight check / feeding clinic Thursday so I'll post some more updates about how those go next week!

Happy 11 months! - November 20

I've been putting off writing this post all day, mostly because I know I've got four weeks worth of updates to catch up on, but also because writing means I have to acknowledge that you're 11 months old and I'm not ready for that.

So here goes - updates. The last one was October 24...I'll do my best:

Week of October 27 updates:
I missed this post because we were in Port Lavaca. Daddy's grandfather passed away so we were gone for his funeral. You did really well on the trip and we enjoyed getting to spend some time with family that we don't get to see very often. You got to meet a lot of people and enjoyed all of the attention! You also got some much needed cuddle time with Grandmother:

You did really well being off of your schedule and in and out of the car; lots of time off of the ventilator! Unfortunately, you also got a little bit sick while we were gone and the doctor said you were right on the edge of a double ear infection when we took you in after the trip. So back on antibiotics you went! You've also used up all of the frozen milk supply that I built up while you were in the hospital so we had to start you on a little bit of formula for part of your nighttime feeding. Between the medicine and the formula you had an upset tummy for a few days, but it settled out pretty quickly.

When we got home we played catch up for a few days with all of your therapists and at the end of the week we carved pumpkins with Big Big, Little Big, Aunt C, L1 and L2. They were a little hesitant to get their hands in the pumpkin mess, but you dove right in!

You loved the mess!

L1 getting brave with the seeds :)

Having fun!

The boys were a little unsure at first.

On Friday we went to the Fall Festival at the church building and you got to play some with your friend. You were pretty amazed to watch him crawl all over the place - almost as much as he was amazed with your shoes :)

Week of November 3 updates:

This week was pretty slow - you had an appointment to get the second part of your flu shot (which you handled like a champ as always) and your regular therapy sessions. You are spending more and more time off of the ventilator during the day - mostly you are off all day except when you are sleeping!

You "helped me" put away your laundry one day - I think you were more interested in pulling everything out of the basket than putting any of it away but it was still cute.

You are definitely a fan of peas - they've become one of your favorites this month!

Week of November 10 Updates: 

Again, pretty normal week - follow up with the doctor who gave you a clean bill of health for your ears, regular therapy sessions, lots of playing and lots of hard work! You've gotten really whiny whenever you want to do things your way and the therapist wants you to do it a different way. It's pretty funny to watch. 

Week of November 17 Updates: (finally!)

Last Saturday we didn't have a nurse so it was a "normal family" day as Little Big kept calling it. We hung out downstairs (off vent!) and you played a lot with Sisters. Took you back upstairs for your naps and then back down for family time. Grammie, Papa and Mimi came over for lunch so you got to spend some time with them and then we went out to eat for dinner "like a normal family" :)

You enjoyed the extra time with Sisters, we've been so busy lately that you don't get to see them as much during the week. Little Big had a friend spend the night on Friday and they played with you some which you loved! We had some lovely winter weather blow through so we cleaned out some of your clothes to make room for some long sleeves and I found a hat that we needed to try on - you weren't thrilled at first:

On Saturday, I went back upstairs to grab something and when I came down you had thrown all your toys on the floor and looked at me, then back down at the toys then back at me like "I can't reach those..." 

You pitched a HUGE fit on Tuesday because you didn't want to use both hands to reach for things - 

You get to stay in the family a little bit longer - you tried avocado yesterday and LOVED it. 

You've gotten really excited about standing and rarely want any help with it, even though you definitely need it. Today, PT worked on pulling up on the edge of the couch...I wasn't a fan. We made a deal that you aren't going to grow anymore so I don't have to worry about planning a birthday party next month. 

Here's the 11 month part of the update:

Foods you love - peas, sweet potatoes, butternut squash. You still like bananas and apple sauce but don't eat as much at a time anymore. Avocados are a new favorite.

Your favorite game is peek-a-boo. You've learned how to cover your own face now with anything that's in your hands (blanket, clothes, diaper, etc) but as of yesterday you also learned how to use your hands to hide your eyes. We're also working on high fives - you like clapping other people's hands together because it makes a noise (yours don't quite make the clapping noise) and last night you figured out that you can make the noise on my hand so it's about seven fives in a row whenever you give them :)

Medical updates: 

You're off the vent during the day, except for naps, and are doing awesome!

Your feeds are still the same and your still eating pretty well. 

Your feet are looking so much better with the braces and your hands are really starting to open up. 

You love showing off your thumbs and we're working on the rest of your fingers as well. 

You are spending a little more time on the speaking valve and tolerating it fairly well - if you get too loud sometimes you scare yourself with the noise, then you start crying and the extra pressure from crying makes it worse, but overall that's going well also.

That's all that I can think of for now - hopefully I won't get this behind again :)

Exciting, New Things - October 24

We've had some exciting new things this week that I couldn't wait until Monday to share.

One that I forgot in my last update: You now have FOUR teeth! The top two finally pushed through, after giving you so much trouble for weeks!

Second, we have some awesome nurses and one of them brought you a new toy! You weren't at all thrilled about this thing at first...

But you started to like it after the first few minutes...

And by the end of the day, you had figured out how to turn yourself in circles, were starting to kick your feet to try to make it bounce, and figured out that you could see all the way down the stairs when people were walking up and down!

Other big news, we've had to move into the big bathtub! You LOVE bath time soooo much, but the amount of water that gets splashed onto the carpet is starting to exceed what's left in the bathtub. You weren't thrilled initially, the tub was a little too cold and the water scared you a little. But once you got settled in you were super excited about all of the splashing you could do.

You were super cute once you got ahold of your toys :)

10 Months - October 20

Time has flown by so fast this last year, but it really feels like just yesterday that we were talking about how exciting it was for you to be 9 months old...and now another month has already past! This month is the big one for us - you have now been home just as long as you were in the hospital!!!

You have learned and grown SO much this month, and I've tried over the last week to collect videos of everything new that's going on.

Last Wednesday you all of a sudden (and I mean, really - Tuesday was completely different!) decided that tummy time wasn't that bad! You did a 9 minute session and then a 4 minute session that day. Since then, every day you've been perfectly content for 5-10 minutes at a time and when you're done, you just roll right over!

The speech therapist has been working hard with you this month and you are responding so well!!! One of the biggest things we're still working on is moving your tongue from side to side and you're starting to do that a little more...mostly when I can't get to my camera, but we were able to catch a little bit of it here.

You also LOVE using the mesh feeder and have started grabbing at it as soon as she sits down with it to get the food in your mouth:

If you finish all of the food in the bowl, you get to play with the bowl and spoon. Lately, you've been acting like you are going to feed yourself, other times you just go crazy banging them together (another skill you've mastered this month!)

This was a pretty exciting month for traveling too - you got to go with Mama and Grandpa on a quick weekend trip for the EYL Planning Retreat and see some friends from this summer:

Shopping with Grandpa - and no vent!

You were a little cranky when we got there :)

But the rest of the weekend you were happy!

And loved being outside!

You also got to spend some time with Nanny when they came to visit. You love riding the pony with Nanny, but only Nanny. I tried to do it with you once and looked at me like I was crazy.

You are ask doing really well with your PT and OT. Your favorite thing to do is still play at your desk, usually just banging on the box but this month you learned how to bang the blocks against it with both hands, how to bang the blocks together on the desk and in the air and how to move things forward and back as well as side to side. The PT found some new toys for you to play with while we work on kneeling - you mastered those in about 5 minutes each :)

On this one, you only wanted to play with the book - 

And on this one, only the laptop part - open and close and open and close and open and close -

You've been playing more in your standing / sitting toy thing (I have no idea what it's called!) and for some reason are terrified of the little smiling lion toy. Grandpa fixed that for you by putting a sock over it's head...

Other big milestones this month: 

You are doing up to three hours a day now off of the ventilator and handling it just fine! We tried the trach collar twice and you were not thrilled each time. It doesn't connect to anything, just hangs around your neck, so it makes moving around really difficult because every time you move it pushed itself up into your face. So we stopped using it...don't tell Dr. M :)

We had an ENT check up last week and she said everything looked great! AND moved us to an every six month rotation instead of every three! She said the trach size looks good so we will plan on leaving you in this size for a while, and that you've actually grown into it some so you have less of a leak around it and shouldn't be able to get any sound out because there is no air going over your vocal chords...I just laughed and said someone must have forgotten to tell you that because you talk ALL THE TIME! She just laughed.

You got to meet one of Mama's really good friends last Friday (finally!) and were happy to have attention from some new people!

You've started really enjoying your time at Grammie's house - laughing and smiling and talking to her. As big as you have started looking in your chairs, you looked so tiny sitting in the high chair that she has! But you loved having the great big tray to bang on and roll your ball around!

You continue to be a happy, smiling baby! You make my day so much brighter. You have worked so hard this month and have grown so much - I can't wait to see what all happens before next month!

Appointments and Updates - October 1

I know, I know - I missed Monday's post...and we had some really big news on Monday...but I'm getting to it now :)

We went to the pulminologist on Monday annnnnnnddd..... YOU GET TO START DOING SOME TIME OFF THE VENT!!!! Short amounts to start with. AND we have to use a trach collar BUT it's a small baby step in the right direction. I was a bit concerned at first because when you were on the trach collar in the hospital it was because you were still on oxygen, but now you're not. The RT explained that it will just be for humidification, and that she has to show me how to set it up and use it, but that if I feel like you can handle not having the humidity for the short amounts of time that you will be off the ventilator, well she can't control what I do :) So, for now, we are trading one machine and big long tube for another machine and big long tube, which means I have to do some rearranging in your room (again), but it will hopefully be a temporary measure until we can show them that you do fine without it. The trial periods will only be while you are awake. Eventually, we'll have to address your apnea issue (yay for another sleep study) so that we can move in that direction.

I told the doctor about your fun non-lazy day Friday story and she seemed REALLY surprised that you did so well without a trach or ventilation for more than four hours. I don't think she really believed me at first when I said you kept your oxygen levels up and weren't fussing until they tried to put the trach back in. She seemed to be waiting for the bad part of the story when something went horribly wrong...but it didn't. She said she'd be talking to the ENT about what they think the next step should be with your trach.

Here's what the trach collar looks like - it just sits on top of the trach and pumps humidified air, which means we'll be soaking through the bibs as we give it a sufficient trial run:

Yes, you've really grown that much since April!

In other, more exciting news: we had a super busy weekend - with no nurse! Our Thursday nurse called in sick, we knew we wouldn't have a nurse Friday or Saturday and then our Sunday nurse called in sick also (lots of bugs going around!) so we didn't have a day nurse at all from Thursday until Monday....and we survived! Thursday was a pretty lazy day; we tried to get caught up on everything because of the busy weekend. Friday we had an early morning dropping off sisters for the County Fair Parade, then we went and picked a spot to watch and you fell asleep. And stayed asleep. Through the sirens, bands, horns, yelling, clapping...you snoozed.

And then you woke up and were not all amused by all the noise and people and excitement...

Later that afternoon we went and took family pictures with all five of us - FINALLY! We had gotten some of you and Sisters when you were five months old, and some of you, Daddy and me, but we still hadn't had the opportunity to get some of all of us together. I am SO excited to get some these printed to add to our photo wall. Right now you've only got one picture up there! Here's the teaser Aunt C put up until we get the disc with the rest of them:

(For those on Facebook you can see more of the pictures here - I'll post the others once we get the disc with final copies!)

Saturday was another busy day - we all went to help out at the 4H booth at the Fair, where you refused to take a nap! Then we hung out for a little bit with GiGi and Other Grandpa/ Blue Eyes/ Pops (Little Big keeps changing his name...), Nanny, Uncle B and Aunt K while Daddy and Sisters played around and rode the rides. Then we all went to dinner (and you still refused to take a nap) and then Uncle B and Aunt K came to the house for a little bit and you FINALLY crashed for the night!

You didn't want to miss anything but were SO tired!

In addition to the appointment on Monday, ST introduced a mesh feeder to you that morning to help you start strengthening your jaw muscles and learn how to chew up your food. You did awesome at getting the food out of it! (Same for this morning!) There was no hesitation at all - you knew there was food in there and you were going to get it out! You're doing so awesome with all of your feedings and she was so excited about how quickly you figured out the feeder!

That's all the updates for now, so I'll leave you with a cute video of you and Little Big playing in the kitchen while I was finishing up dinner:

9 Months! September 20

Happy 9 Months Baby Girl! You have had such a fantastic month - constantly growing, learning, and still impressing everyone!

You are spending a lot of time each day sitting and playing at your "desk". You've started working with blocks and learning how to stack things. Your reach is getting better and better, as is your grasp. We tried working on holding crayons, and got these great crayons thinking that they would be ok if you stuck the end in your mouth...but you ended up turning it around and sticking the crayon end in your mouth so we're holding off a little on that! They're a little bit of a softer crayon so you ended up with a lot of blue in your mouth.

You are still doing SO well with eating foods - the amount that you're eating is increasing and you are handling the foods much better in your mouth. You still have a little bit of work to do with your tongue movements but there's already been a lot of improvement since our visit to the clinic a few weeks ago. We did learn that you're not too crazy about pickles. Either that or you just really weren't sure what to think about something so different than what you've been eating! (And thank you Little Big for that nice ending...)

This week has been an up and down week. You had a low grade fever all last weekend, and we thought it was just some teeth coming in....but they haven't shown up yet. You were really fussy Monday and Tuesday and just wanted to be held and cuddled (which I was perfectly happy to do!) but started developing a cough Monday night. We did a few breathing treatments over the week but it didn't seem to help any so we actually spent your 9 month birthday at the doctors office. You were almost back to yourself Thursday and Friday and spent a lot of time playing with your new toys - you mastered getting the rings off of this toy in about 15 minutes!

Anyway, it turns out your have a slight ear infection so you're back on antibiotics; and they renewed your albuterol prescription so we can add that to your breathing treatments as needed. Also, happy day, Mama got a flu shot while we were there. Joy. Not quite how we planned to spend our day, but we survived it.

You are growing up so fast I don't even know what to do! There are days when I feel like things are going so fast that you'll be off to school with your sisters tomorrow and then we have weeks like this week where you just want to be held and rocked that remind me that you're still my Baby Girl. I love you so much and am so proud of you and how hard you're working! Keep fighting and keep growing!

Oh you know, just hanging out in the chair

"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!