Esophagus Dilatation #6

Lucy's sixth esophagus dilatation was completed yesterday (Monday).  She did great - one of the best recoveries for her in terms of not needing oxygen for too long in recovery and general temperament afterwards.  She is such a trooper!  Unfortunately, the nurses and staff pretty much all know us (or know of us), so we are starting to have nurses we've had before.  This is actually a good thing, because they know how she acts during recovery and are patient and understanding with us and let us sort of do our thing and be in the immediate recovery room with her to comfort her.

However, even though her recovery was great, her actual dilatation results were disappointing.  Her esophagus had grown together more than last time - to the point that the doctor was only able to re-dilate it to it's previous number (8 mm) and did not make any additional forward progress, as we have with each previous dilatation.  We were definitely bummed about this outcome, as we were hoping that we could begin to stretch out these dilatations more than the 3 - 4 weeks apart.

We knew early on, when Lucy was still in the NICU, that this would be a journey of ups and downs.  We've had so many "up" moments lately, that I think we got comfortable in her forward progress to the point that this setback was a surprise for us.  I renew my claim on Romans 12:12, to be "...joyful in hope, patient in affliction, faithful in prayer," as we continue on this journey with our little girl.

Thank you for your well wishes, prayers, emails, phone calls, texts and overall support over the past few days!  We appreciate you all! 

Quick Update

Lucy has her 6th esophagus dilatation tomorrow - prayers are welcome!  We are very interested to see if the past dilatation had staying power for 4 weeks, since this was the longest we have gone between dilatations since we started these back in March!

We will update you on how it goes for little Miss Lucy tomorrow.

In the meantime, here are some outtakes from bedtime.  We consistently follow the 3 B's at bedtime - bath, book, bed and have since we brought her home from the hospital.  She loves helping daddy get her bath ready and cracks us up with her sleeping positions (I'm surprised that she can sleep through my flash photography!)

Overseeing the bath preparation

How can your foot next to your hand be a comfortable way to sleep?

Stretched out and sleeping like a baby!

Feeding Clinic - Take 2!!

On Thursday of last week, Lucy and I visited the Feeding Clinic again.  I mostly wanted to get help determining what type of food she should be eating and verifying that we are feeding her enough.  Overall, it was a good visit.  They always include a physical therapist visit, which is sort of annoying because they do things like rub lotion on Lucy and tell us that she jumps too much?!?!  Anyways, that was just a small part of the visit.  The rest of the visit was spent talking about Lucy's nutritional needs and observing her eat.  She had yogurt (did great), 2 bites of mashed up spaghetti (did OK - liked the texture and taste, but it got stuck a bit), and a graham cracker (terrible - usually she loves these and does great, but the spaghetti was giving her trouble, so the rest of the visit was a bit of a challenge for her).

So, bottom line, they suggested we keep doing what we are doing (I guess that is a good thing and encouraging to know we are on the right track, but I was hoping that as professionals they would have some really proactive things we could try with her to improve her eating experience.)

However, as a direct result of the visit, we will make the following changes to help increase her caloric intake:
 - Switch from Formula to PediaSure
 - Prepare more food for Lucy from scratch - like pureeing stews, soups, meat and veggies, etc. instead of purchased baby foods.  We have tried this many, many times in the past and almost always have a mashed sweet potato or regular potato in the refrigerator that we feed her, but we have had challenges getting other foods to a consistency that she can handle for large volumes of food.

At her age, Lucy needs between 80 and 90 calories per kilogram.  To put that into terms we can understand, Lucy weighs between 8.5 and 9 kg, so she needs about 750 calories per day.  We've been counting her calories for quite while and keep a food journal for her - she is currently taking about 200 calories per day orally and the remainder through her feeding tube (did you know that it takes approximately 3 Cheerios to get 1 calorie?  Well, I do!)  So, we have some work to do in order to get the oral feeding quantity up and the feeding tube quantity down.

We will have another dilatation in a week or so, and then repeat a swallow study at the beginning of August.  We will plan to see the Feeding Clinic again in September.

When I think back to the little 4 month old that we brought home (exactly 9 months ago!) who was taking NOTHING orally, we have come a long way!  However, it is obvious that there is still something anatomically not correct with her esophagus/throat area and we are eager to get that figured out so that we can move forward more quickly.   I need to reminder myself that patience, patience, patience is needed!  Psalm 40:1 says, "I waited patiently for the Lord to help me and He turned to me and heard my cry."  Our study Bible notes that often blessings cannot be received unless we go through the trial of waiting.  So, we wait...and focus on how we can love God, serve others and tell others about Him while we wait.

Although I know I write about Lucy's wonderful temperament all the time - she really is such a content and happy baby.  She plays hard, laughs hard, sleeps hard and seems to enjoy life and those around her. Today,  all of her cousins were over and she just crawled right in the middle of them and made sure she got time with her toys, despite all the big kids hanging around!

We also took her to her first Twins game - what a trooper!  She happily got passed from lap to lap, sampled Funyuns, a peanut with the shell on (she just licked it!) and DQ ice cream cake.  She took a quick nap during the 7th inning and was ready for an early night once we got home.  Such a joy to have in our lives!!

Mama/Lucy Time

Jason is traveling for work for 10 days so Lucy and I get to have lots of mama/Lucy time.  She is such a fun little girl - every day is something new - what a joy to get to experience it with her!  She tolerates shopping with me pretty well and even helped pick out a gift for new baby Nara - Lucy had a definite opinion on which outfit we got!  She likes being able to choose things - like which book to read, if she will eat Cheerios or a cracker, or which clothes to wear.  It's so cute that she seems to have definite opinions on what she wants - at the age of 1!!

She still loves, loves, loves books and reads her favorites several times a day.  She is very careful with the books that have paper pages (versus her board books), and turns the pages, studying them one by one, as if she can actually read!

Nothing will prevent her from getting what and where she wants.  She has a laser-focus when her eyes lock with things like the remote control, a cell phone, a power strip, or the tiniest piece of ANYTHING on the floor.  Faster than a speeding bullet, she is crawling across the room or down the hall or into a bathroom or bedroom to get what she wants. She doesn't seem too interested in walking by herself yet.  She cruises around the furniture with no problem at all, and stands by herself but if she needs to get somewhere, she drops to her bum and crawls off to get it!

She is also getting more and more vocal - with words we can understand!  She is saying things like "Duck", "Bob", "Nap", and "Fish" - what a smart little girl!

Finally, and probably my favorite of her new skills is her kisses!  She started out kissing her stuffed animals and baby dolls and is finally bestowing them on us - when we are lucky!  Like most kids, they are open-mouthed and slobbery, but it melts my heart every time I get one!

We are looking forward to reconnecting with the Feeding Clinic this week to see what we can do to move her feeding skills forward and will update you all on how it goes.

Unfortunately, one of Lucy's favorite places to play - gotta keep those doors closed!

Happy 4th of July!!

We are enjoying a relaxing mid-week holiday this year - what a treat to have a Thursday off of work with no plans except to grill out, hang out and enjoy the gorgeous weather!

Lucy's been gearing up for the 4th all week by wearing her patriotic outfits (she seems to have a lot of them!)

Shaking her 4th of July shaker (which she made with only a little help from Nanny Sue!)

Applauding herself for the great job on the slide

Hhmmm...can I climb UP the slide instead?

Checking out her 4th of July picnic buddy

And...enough of this photo shoot - I'm outta here!

What a change from a year ago - do you remember her 4th of July NICU shoot last year?

Esophagus Dilatation #5

Lucy Hamming it up

Wow...I can't believe that Lucy has had 5 of these dilatations already!  Last week's procedure went very well though, so we are feeling grateful for that.  The doctor said her esophagus seemed the same size as last time to him, which is wonderful news!  That means it is hopefully wide enough open that it will stop growing together in between procedures all of the time and that the forward progress will be faster.

Instead of going back in 3 weeks, we will wait 4 weeks this time - woo hoo!  We have also scheduled a follow-up feeding clinic appointment for Lucy in a few weeks.  If you recall, we visited the feeding clinic a few months ago and didn't get much for results - they were very hesitant to work with her on feeding because of her narrow esophagus and history of aspiration.  So, hopefully this time will be better and we'll get more results.

Guilty - caught rifling through the fridge!!

As a side note, we received the most lovely gift in the mail the night before her procedure - it was a Prayer Book from the 3rd and 4th grade class at Community Christian School (where I went to grade school).  It is filled with pictures and Bible verses from the class that they made during the school year - such an encouragement to us - Lucy will treasure it always!

So thank you to Gracie, Mae, Lydia, Carter, Joseph, Brad, Tracelyn, Daniel, Bryce, Jackson, Lilly, Max, Lydia, Jenna, Olivia, Amy and all of the other contributors to Lucy's Prayer Book!  Your prayers have lifted us up and provided hope and encouragement to our whole family.