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

Happy Mother's Day!

Happy Mother's Day!

I am so blessed to have such a special little girl like Lucy to call me "Mama."  And yes, she can say mama!  She also has 7 teeth (almost 8 we think!!) and my little nugget is CRAWLING!  I can't believe it.  She's still pretty terrible at it, but gets better every time she tries (see video below of one of her first attempts - don't mind the dog...).

We are thrilled that she is doing so well developmentally, as this has always been one of our foremost concerns with her.  Now if we could just get rid of that pesky feeding tube, her 4 month stay in the NICU would seem like a bad dream instead of an actual memory!

Her third esophagus dilatation is scheduled for Wednesday :( Unfortunately, these are becoming a routine for us - not something I want to get used to!  Prayers for her comfort and successful procedure are always appreciated.  We will update you all on how it goes.

Duluth

Ready for lunch!

As I mentioned previously, Jason, Lucy and I spent the weekend in Duluth.  Jason and I are celebrating 3 years of marriage this week so we decided to head up north for a little get-away.

The three of us had so much fun!  Lucy seemed to really enjoy herself at all of the new places we took her - the aquarium, out to eat, her cousins house and even swimming!  She is such a good car traveler - mostly she sleeps, or else she will entertain herself with her car toys or by talking softly to herself in her car seat.  Even though we can't feed her food off of a restaurant menu yet, she did great feeding herself baby food whenever we were out (although she was super messy and her spoon ended up on the floor at least 25 times per meal - gross!)  She also had so much fun hanging out with her cousins and playing with their toys.  They love her so much - it's fun to see her watch the other kiddos and see how gentle they are with her.  This weekend was a good example of why we moved back to Minnesota - we can drive 3 hours and spend the weekend with my sister and her family.  If we were still in Colorado, we wouldn't be able to do that so easily.

Such a big girl in her stroller at the aquarium

Cousins Raina, Ollie, Remy and Jackson and Barry & Jenny

And...we took her swimming at the pool in our hotel!  I was super hesitant to take her in a pool because of her feeding tube - I don't want any bacteria or anything to get in her opening. But...I taped her up with plastic wrap around her site and put her in a one piece and we took her to the pool.  She loved it!  At first she held on to Jason pretty tightly, but before long, she was smiling and splashing and really having a good time.  Another couple in the pool area with us commented on how much she liked the water and asked how often she's been in a pool - they couldn't believe that it was her first time!

Ready to go swimming!

Loving the pool!

She wasn't the best sleeper in her hotel crib and ended up sharing our kingsize bed for a good part of the night both nights we were there.  I know a plenty of families that do the family bed thing when their kids are little, but we have never been one of them, so it was different for us to have her in bed with us. Jason said he woke up at 6 this morning to Lucy patting his face and watching him sleep.  Hahaha...that cracks me up!

Even though the weather was cool and rainy most of the weekend, we overall just had a nice, chill weekend as a family.  It's so much fun for me to see Lucy and Jason play and hang out together and she seems so happy to have just the three of us together all day, every day and every night.  What a good baby! 

Playing dress-up!

Goofing around with Daddy at the sea otter exhibit

This weekend reminded me of a song I grew up singing - I have taken it for granted often but find it a good description of my thankfulness tonight..."This is the day that the Lord has made; let us rejoice and be glad in it."  Psalm 118:24

So tired out after a busy couple of days - she feel asleep face down on the bed before we checked out of the hotel!

Springtime!

In keeping with my previous rants about the weather...we have been so thankful for the gorgeous weather over the past few days here in Minnesota!

Lucy loves to be outside - there is so much to look at and so much space to explore! 

She is also becoming VERY independent in regards to feeding herself.  Typically a baby her age would be able to handle table food and feed him/herself finger foods.  But since she only gets purees still, she has taken to feeding herself with a spoon.  She is pretty coordinated and does a great job - but it's still a pretty long, messy process for us (I frequently sport baby food of some form on my shirt and pants, too!)

On a positive note, her gagging has been much improved since her last dilatation.  Also, her leaking has been SOOOO much better since we've started using the homemade dressing all the time. We haven't had to change her dressing/clothes multiple times for quite a few days in a row - so nice!

We are heading to Duluth on Friday to celebrate our wedding anniversary, see my sister and enjoy a mini family vacation.  Traveling with a baby takes a lot of planning, but traveling with a baby who has a shunt and a feeding tube takes a LOT of planning - but we are up for it and looking forward to spending some quality family time together!

Esophagus Dilatation #2 (Oh, and Lucy is 10 months old!)

Yesterday Lucy turned 10 months - I can't believe it!  Wasn't I just writing that she was 9 months old?!?

Today she had her second esophagus dilatation.  The procedure went well again, as her first one did last month.  Instead of performing the dilatation with a series of wires/tubes, this time the surgeon inserted a deflated balloon into her esophagus and then inflated it once it was in place.  They inflate it just to the point that the tissue tears and starts to give a little.  Beyond that - the risk of more injury to the esophagus is too great.  He was pleased with the results, and told us that he was able to dilate it from around 6 mm to 8 mm.  So, we still have a ways to go and will repeat this again in 3 weeks.  He reminded us that this is a long process - the results are better right after a dilatation than they are 2 - 3 weeks down the road, because the site re-scars, causing the stricture to narrow again over time.  Once it gets wide enough, that will happen less and less.  Below is an image that we got today - before on the left, after on the right.  I think that the zoom is a little different, but you can definitely see a change after the procedure.  See how tiny it was before?  No wonder the poor baby has trouble swallowing sometimes! :(  Prior today, she had been having a lot of reflux and gagging so we are hoping that issue will be improved with today's procedure.

Lucy had a much easier time coming out of anesthesia today than she did last month.  Although it still took her a bit to get her oxygen levels to a high enough rate for them to discharge us, it happened much quicker today.  We had talked with the anesthesiologist before the procedure and he was going to give her a slightly different dose/mix in the hopes that she would recover quicker and we are so thankful that she did!  Thank You to all of you who lifted us up in your prayers today.  We felt it!

She had a nice long nap in the car on the way home and tonight was such a gem.  She is always happy to be home, surrounded with those she loves the most and able to play with all of her toys. 

Someone challenged me to claim a verse this week, as we continue to face the long road ahead of us with Lucy's health.  So, Romans 12:12 is what I am holding on to:  "Be joyful in hope, patient in affliction, faithful in prayer."