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 :)