Merry Christmas!

Merry Christmas to all of you!

We are so thankful to have been able to celebrate with our best gift ever - little Lucy London.  She's at a tough age to take pictures, especially since she like to blow "bubbles" all the time.  Here are a few of our favorites from the weekend:

6 Months Old!

Lucy is 6 months old!  We can hardly believe it.  She is at such a perfect size for cuddling - even if she doesn't really like to cuddle!  Snuggling her close when she is falling asleep or waking up is the sweetest thing and the smiles she gives when she sees another human in the morning are too cute.  It's fun to hear her blowing bubbles and playing in her crib when she wakes up before we come to get her up.

We've had 3 very good reports this week at her doctor's visits:

1.  Neurology - the doc thought she was doing great and her shunt is still programmed correctly.  We left with some material about what to look for regarding shunt malfunction and plans for an MRI in a few weeks.

2.  Cardiology - Lucy had an echo (which she slept through, thankfully!) which showed that she still has a small murmur/hole in her heart (VSD), but the doc thought that follow-up in a year is all she needs - Great news!

3.  ENT - Lucy still has stridor, sometimes she is perfectly quiet, other times she is very noisy.  At this point, she doesn't need intervention, so we are hoping that it will gradually improve as she gets older without having to have surgery.

We really liked all of the doctors that we saw and feel very confident in their abilities to recommend the best course of care for Lucy going forward.  They are also very helpful in coordinating her care with other docs so that they can take a "whole person" view of her care, which is great.

She is up to 14 lbs, 7 ounces, and has almost grown to 2 feet tall!  She is rolling both ways now and is close to sitting up by herself.  Feeding cereal and veggies is going better than a bottle, but it is still slow going.  We are very careful to give her thinned out liquids and she does pretty well - only a few occasions of spitting up, gagging and/or inhaling the food instead of swallowing it.  As we have known, the eating thing will definitely be the longest path on her road to recovery (at least physically).

Overall, she's doing great and continues to amaze us with her progress!  Just think, a short two months ago we were just bringing her home.  I can't help but think of all the families with babies in the NICU over the Christmas season and my heart goes out to them - it would be a tough holiday to spend in the hospital.

Lucy meeting her friend Blake for the first time - he's just a couple weeks younger than Lucy!

We hope that you are enjoying the holiday season with friends and family and are grateful that we have been able to be in contact with so many of you - through emails, calls, Christmas cards or visits. 

Winter Wonderland

We are busy preparing for Christmas here in Minnesota!  We had a nice big snow last weekend - over a foot - and took Lucy out to enjoy it.  She wasn't sure what to make of it - but she couldn't really feel much cold through her super puffy snowsuit!

Because of Lucy's history, we are very careful about where we take her and spend most days at home so that her risk of getting sick stays low.  Our household is getting flu shots and vaccinations against whooping cough and her pediatrician has requested Synagis, a vaccine designed to help prevent RSV, but so far our insurance company has denied it. With her airway problems, getting RSV could be really tough on her and cause additional breathing complications.  However, it's a very expensive vaccine and difficult to get insurance to cover.  Speaking of expensive, we finally received Lucy's inpatient hospital bills - not including the costs of doctors, labs, surgeries, etc., we were charged between $10,000 and $15,000 PER DAY just to have her in the NICU!  I could not believe it when we got the final paperwork and am now, more than ever, grateful for health insurance!

In any case, when we do get the opportunity to go out, it's fun to see how much she loves to look at new things and meet new people.  Last weekend we got together with some of my childhood friends - we go way back to Pease elementary school!  Great to see Julie and Trish and their families!

We do get some visitors at the house - one of them from last week was Lucy's great-grandpa and grandma (my dad's parents).  They absolutely love their newest great-grand daughter and are so happy to have her home from the hospital and living closer in Minnesota.

We have 3 doctor's appointments next week, so we'll be busy the week before Christmas.  We are meeting with the cardiologist, neurosurgeon and ENT and are hopeful for positive reports all around.

We hope you are enjoying the holiday season and taking time to sit back and spend time with loved ones.

Lucy's new "team"

We had our first meeting with Lucy's new pediatrician this week - she was great!  Very clearly, she had studied Lucy's file and knew all about her background.  She asked questions that were intelligent and well researched and we left with a boatload of referral forms for us to follow-up on.

Lucy's Stats:


Height - 1 ft, 11 inches (3rd percentile)
Weight - 14 lbs (25th percentile)

She's growing, but still on the small side of the growth chart; however, these percentiles are based on full-term births so don't take into account that she was born 4 weeks early.  Also, if you've ever met her grandma Jeanette or aunt Kitty, you know that there are some short genes on the Jason's side!

Lucy's new Minneapolis-based "team" includes:

 - Pediatrician
 - ENT
 - Gastroenterology
 - Cardiology
 - Urology
 - Spinal
 - Neurology
 - Early Intervention (through the school district)

Hopefully, some of these visits will be one time or annual visits only and some of them will no longer be needed as she continues to grow and heal from her surgeries.  However, it is a bit daunting for Jason and I to schedule time with and meet all these new doctors!

Meanwhile, today we tried cereal for the first time - I'll let you decide if she liked it or not!

Her bottle feeding continues to go slowly; she can definitely do it, but she just doesn't like to.  We successfully feed her about 1/2 oz per feeding by bottle and the rest through her feeding tube.  We're hopeful that she'll like cereal and baby food better and we'll be able to get more of her food in through her mouth if she doesn't have to suck it through a bottle.

In Loving Memory of Great-Grandpa Charley DeVries

When Lucy was born, she was blessed to have 4 great-grandparents and 4 grandparents still living.  Her last living great-grandparent on the Bryant side passed away just a few short months before she was born.  Sadly, another great grandparent passed away last week - my mom's father, Charley DeVries.  He lived a full life to the age of 91 and lived out his passion for farming and family in Wisconsin, where his surviving wife, Lucy's Great-Grandma Sylvia still resides (pictured above).

We are so grateful that many family members were able to attend the funeral, including me, my sisters and Lucy (Special Thanks to my brother-in-law, Tony, for driving us 4 girls and putting up with us all on the long road trip!).  While taking a 5 month old with Lucy's special requirements on a 5 hour road trip to attend a funeral and burial is not the least complicated trip in the world, I knew that if we still lived in Colorado there was no way I would have been able to make the trip with her.  The reason for the spontaneous family reunion was sad, but the end result was happy, as many people that have been praying for and invested in Lucy's life were able to meet her in person.

We are sad that Lucy never go to meet her Great-Grandpa, as we know he would have loved to hold her and tease her when she got older.  However, we rest assured that Grandpa was singing the words to the song we sang at his funeral (My Jesus, I Love Thee) and that they will meet each other one day in Heaven:

 

I'll love thee in life, I will love thee in death,
and praise thee as long as thou lendest me breath,
and say when the deathdew lies cold on my brow:
If ever I loved thee, my Jesus, 'tis now