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

 

Happy Thanksgiving!

We have much to be thankful for this year and top of our list, not surprisingly, is little Lucy London.  She is such a joy to us and we are just so THANKFUL to have her home for the holidays.  We are also thankful for each and every one of you that read this blog and keep Lucy and our family in your thoughts and prayers.  So from us, to you, Happy Thanksgiving! 

We have successfully made the move to Minnesota.  Lucy did great on the trip!  We left Denver around 6:30 on Sunday night and drove to Lincoln, NE, where we stopped around 3 am until 10 am.  We then headed the rest of the way to Princeton, MN - Lucy slept 90% of the ride, except for short breaks for lunch and diaper change and for a good hour when she cried through Minneapolis rush hour traffic (we didn't much enjoy that stretch, either!)

We've enjoyed the week at my parents so far, where Lucy got to meet all her her cousins on my side of the family and a good portion of the extended family as well. 

Other than that, we are getting settled, getting used to COLD weather - waking up to sub-zero temperatures in November takes a little getting used to - and finding our new routine before we start doctors visits in a few weeks.

Lucy continues to grow and learn new tricks to show off to all the new people she meets - like blowing bubbles and letting out squeals when she is excited!

Getting ready to move to Minnesota!

For those of you who were wondering, that last blog was written by Jason.  If it is 1:20 in the morning, you can bet that I am sleeping!  To his credit, he has been awesome and taking on daddy duty by himself as I finished up in the office this week and spent some time out saying goodbye to Colorado friends.  He even ventured out with the Baby Bjorn and black and pink diaper bag to take her to a doctor's appointment by himself - her's a picture...feel free to giggle - it's definitely NOT what he thought he'd be doing 5 years ago!

Tomorrow, we are moving to Minnesota!  I can't believe that it's finally here!  We've been talking about it and planning for it for such a long time - we thought it would happen a couple of months ago, but alas, Lucy had her own time in mind!  Jason and I are both ready to move on from this one-bedroom apartment and have a little more space to spread out.  Although, this place worked out great for us this past month as we shuttled Lucy to her appointments.  We are busy packing the temporary stuff that we moved and eating the random food left in the cupboards - pretty sure out last meal will be mayo, prunes and tortillas!

Lucy continues to thrive at home.  She's up to 13 lbs, 8 oz (that is a two pound gain since we brought her home 4 weeks ago!).  And...she passed her swallow study on Wednesday!  That means that we can start to try to bottle feed her.  It is very slow going...she is great a sucking from a bottle, but when she gets liquid in her mouth, she doesn't really know what to do with it so starts to cry.  Our instructions are to try once or twice a day and the thought is that she will eventually get used to sucking, swallowing and breathing at the same time.  We are so excited to be moving her forward with this next skill.  She is also able to roll from her stomach to her back (since she still hates tummy time!) and loves to sit up and look around at the world.  We visited some of our old NICU friends this week and everyone seemed surprised by how well she is doing holding her head up and how big she's gotten.

Just think...our next blog will be from MN!