Happy Father's Day!

Today is Father's Day and I am so grateful to have such a wonderful dad and also for Lucy to have a wonderful Daddy!

It is a joy to watch Jason learn how to be a daddy and to play with Lucy and tease her and cuddle with her before bed.  I love that he balances me out as a parent - brings down the stress level at times and brings up the noise level at others!

Just think, last year at this time, we were in the hospital eagerly awaiting Lucy's birth and we can't wait to celebrate her 1st birthday on Friday!!

First picture together!

Bedtime snuggles on Father's Day!

A few things on fatherhood and moving

I hate moving.
It seems so simple to say, but when you've moved over 30 times like I have, it's pretty easy to understand why.
Cross country moves are less irritating to me than the short move, since I had so many short moves in my life. Back and forth to various residences in college and then there's the fact my mom moved four different times in the same city during my college years.
Granted, I did spend a shade under a decade in college, so that might help expand the timeframe just a little.

I love our new place.
The house here in New Brighton didn't have everything we wanted to be a perfect house, but it has so much potential to add the things we want to make it exactly what we want. For now, it's a great place and a place I'm sure the Bryant family will enjoy for many, many years to come.

It's nice that Abby and I are close to friends. Being somewhat isolated from my side of the family can get difficult at times, even though I don't openly say it. But having friends that are close to me like my family makes a big difference.

I've always said Minnesota is the best place I've ever lived and it's nice to be back.

The stress level has also quelled. We're not cooped up, although I'm forever thankful that Abby's parents took us in for that long winter stretch.

Watching Lucy grow up is something quite amazing. To think this little girl spent the first four months of her life basically lying down with tubes and things all stuck to her makes me thankful every day. She's got her mother's resiliency for sure. She's got a lot of my mannerisms, many that become apparent each and every day. The kid sleeps exactly like I do. On her right side, arms crossed or tucked and her feet sticking out from underneath a blanket. Weird.

Working from home has its challenges, but also its benefits. I can go up and spend time with my daughter anytime I want. That's something my previous jobs couldn't provide.

Abby working close to home also has extreme benefits, although we're still getting into the nanny thing. I think once Abby's fully comfortable with everything, we'll be having a lot more lunches at home.

Hard to believe we're coming up on a year -- there's so much I want to jot down, but for now, I'll just keep it short. Most of you know how long-winded I can be.

Thanks for all the support, it's really been great to have so many people out there who have been friends and confidants all throughout this journey.

JB

Neurology Visit - Doing Great!

Swinging!

Lucy had a visit with Neurology today and got a great report.  There were no scans involved - just a check of her shunt setting (no change, which is good) and a general check-in with the neurologist - reflexes, eye movement, developmental milestones, etc.

We will start to see Neurology 2x per year from now until she is school age, unless we have concerns with her shunt or other development.  She's such a rock star!!

We have been busy trying to enjoy the nice weather when it's here!  There is a lovely little park about 3 blocks away that we walk to whenever we get a chance.  Lucy likes the swing, but does tend to have a death grip on the swing so she doesn't fall out!  We've also taken many trips to Bachman's, Home Depot and Target to outfit the new house.  Lucy does great out and about, watching all the people and looking at all the sites - we just have to make sure we have all socks and shoes when we leave a store (she's very good at getting them off!)

Munching on my shoe while mom and dad shop for plants

My FAVORITE activity!  I love reading books, looking at the pictures and turning the pages.

Esophagus Dilatation #4

Looking like a little lady in her dress from grandma

Today, Lucy had her 4th esophagus dilatation.  Poor baby! :(  Jason and I were counting back on the number of surgeries/procedures that she has had and think that this was her 10th! (1st attempt at TEF repair, G-Tube insertion, 2nd attempt at TEF repair, vascular ring repair, shunt placement, upper endoscopy/bronch, and esophagus dilatations 1, 2 3 and 4)  Let's hope that she has less in her future than she has had in her past.

Today's dilatation went very well.  Her site had grown together quite a bit again, but the doctor was able to get her to the third level of the balloon and go even a little further with a larger one as well - he thought he got her to about 8 mm.  If you remember, she started at about 2, so that is great progress!  The theory is that once the opening is wide enough, she will be able to eat more foods that keep it open and it will not have the opportunity to close as easily.  Also, she woke up so much better this time!  The anesthesiologist really listed to our previous experiences and looked back at previous notes to determine the best doses and mix of stuff to give her.  When I sent back to the recovery to see her, she was awake and not on oxygen!  We are very thankful for how things went today.

We are so proud of our little girl - she remains to happy and fun despite this not fun stuff we have to put her through every few weeks.  The hospital staff always tell us how cute she is and are amazed at how happy and smiley she is when she comes in!

Other than that, we are staying busy getting settled, getting used to the new nanny and planning her first birthday party!

Next week, we have a follow-up appointment with neurology to check on the status of her hydrocephalus.

Her favorite thing to do - pull herself up and play standing up (so much more fun than sitting, right?)

New House!

We are very excited to have moved into our new house over the past weekend.  We had a blast living with my parents for a few months after we moved back from Denver, but were ready to be back on our own and have more space again!  We were all pretty exhausted and depleted when we moved so were so grateful to have a place to move into that we didn't have to worry about anything at.  Mom and Dad - here is a shout out to what great parents and grandparents you are.  We would not be where we are today without you!

Believe it or not, this was the 4th house that Lucy lived in (5th if you count her 4 months in the hospital!)  We took her home earlier than expected from the NICU, so lived in Colorado Springs for a few short weeks with her, then moved to a temporary apartment in Denver for the month of November while I finished up working at Dish and while we got used to having her at home and took her to many, many follow-up appointments.  The, it was on to Grandma and Grandpa's while we looked for a house here in Minnesota!  For those of you who know me, you know that I thrive on routine, so that is an indication of how unsettled our lives have been in the past year.  We are very grateful that those days are behind us for the most part and we have settled in our jobs, our house and getting back into a routine!

Lucy riding off into the sunset - leaving Grandma and Grandpa's House!

Lucy is adjusting well.  She's had a bit of a cold this past week, so sleeping has been a challenge in general as she's been waking herself up from coughing and then sees a brand new room and gets a little anxious.  Jason's been a rockstar at soothing her back to sleep in the middle of the night! :)  She loves to explore the many rooms and windows and to watch the neighborhood out of the big living room window.

Rediscovering toys and books that were in storage

Our welcome committee!

Next week we have esophagus dilatation #4.  Her eating has been better, I think.  She's been very picky about eating baby food - I think she's over the blandness of it and wants real food!  So, she's been eating lots of Cheerios, Yogurt Melts and teething biscuits in addition to the few bites of baby food she'll eat.  Now that we are settled, we'll start to experiment with our own pureed concoctions to see what flavors and textures she'll tolerate.  She has totally mastered drinking out of a straw!  I'm so proud of her.  We've been diligently letting her practice every day with a therapy cup that I ordered online.  It is a soft plastic squeeze bottle that has a reusable straw with it.  We were squirting a tiny amount of liquid into her mouth through the straw until all of a sudden last week she figured out that she can suck on the straw herself and get something out of the cup.  She is still only drinking a tiny bit, but she can do it all by herself!!!

11 Months Old!

Miss Lucy is 11 months old today!

Lucy, mommy and daddy love you to pieces and we are so proud of your strength and resilience!

Esophagus Dilatation #3

Lucy had her 3rd esophagus dilatation last Wednesday.  Overall, it went well and we continue to make extremely slow progress, which is expected with this type of issue.  At her last procedure, the docs were able to get a balloon inflated to Level One and this latest time, they were able to get to a Level Two with that balloon before there was tissue breakdown and they had to stop.  In between procedures, the opening begins to close up again, but the tissue is much more flexible so up until now they have always been able to make some forward progress, which is great.

She had some trouble with the anesthesia again - it took her awhile to fully wake up and to consistently keep her oxygen levels up to the point that we could take her home.  It is highly frustrating to Jason and I, because we have a different anesthesiologist every time so we tell them about her past issues and remind them that she has to be pretty awake before they remove the breathing tube and that she does better with less narcotics, etc. etc.  However, it seems like they either don't listen or think they know better and then we get the results that we did this time.  SO FRUSTRATING!

But, par for the course, Miss Lucy handles it like a champ and is back to her typical fun-loving self within 24 hours, after a good night of hard sleep.

We've scheduled her next dilatation for three weeks out and also have a neurology visit and her 12-month pediatrician visit on the books for June already!

She's busy crawling all over now that she's gotten the hang of it, and she's eating Cheerios!  I'm so proud of her!!!  We consistently try to experiment with new textures by thickening her food and making our own pureed foods for her to try or giving her mushy things like noodles or carrots to gum on.  Some thing she does better with than others, but she is doing a good job of learning to feed herself Cheerios and so far has been able to swallow them without gagging - what a big girl!

Other than that, we cannot believe that she will be 11 months old tomorrow and are very excited to close on our new house tomorrow as well!

Lucy exploring the new house