7 months old!

Lucy is 7 months old today - wow!  Where does the time go?

We've been enjoying the indoors lately, as the January weather in Minnesota has lived up to the reputation - it's currently 9 below outside - Brr!

Lucy recently had a pediatrician visit - here are her most recent stats:

Weight - 15 lbs, 4 oz (25th percentile)
Height - 2 feet (10th percentile)

Above her can see her poor little legs after her shots.  She did great - definitely some tears, but that's to be expected!  A note about her socks - little girl socks DO NOT stay in place, plus it's hard to find any that do not contain pink.  So, I bought her a pack of boys tube socks and love them - reminds me of the old middle school basketball days when that's what we wore with our uniforms!

Her doctor thinks that she is doing great from a developmental milestone and growth perspective.  We have urology, Gastro-intestinal and a big day of outpatient surgical-related visits coming up in the next several weeks.  She'll have an MRI as a follow-up to her shunt surgery, a full spinal MRI, and a bronch evaluation, all of which she'll be put under for.  I am not looking forward to her going under again and the possibility of requiring a ventilator - it's so great to have her tube-free and the NICU memories are a little too fresh in my mind to put her through that again.  However, we are reminded that she still does have a long road ahead of her from a medical perspective.

We were given a referral to a feeding clinic, which I am really excited about because, as I have mentioned on several occasions, I really dislike her feeding tube!  We've been feeding her a couple of bites of cereal in the morning, a bottle at noon and a couple of bites of vegetables in the afternoon - all over quite a long period - 20 to 30 minutes as least.  For a few weeks, she was throwing everything up that she took orally, but over the past week or so, she's been doing great about keeping it down, so that's super encouraging!  She doesn't drink a full bottle on her own or anything that drastic, but she'll take a half ounce or so without too much of a complaint.  At her most recent pediatrician's visit, we also increased her reflux medication dosage, so perhaps that is helping.

Since we keep her home most of the time, Lucy doesn't have too many occasions to get all dressed up.  However, we recently went to a shower for her to meet my college friends - what a treat to have her meet all the girls!

We are often reminded of God's faithfulness through this journey and his steadfastness through all of our changes.  His unchanging nature is a great comfort to us as we continue to figure out next steps for our family.  He definitely knows when we need a break and helps things fall into place for us!

Road Trip!

Lucy's first wrestling tournament - the Virginia Duals

 Uffta...we are home.  You probably didn't even know we were gone, but the three of us took a LOOOONNGGGG road trip from Minnesota to Virginia for 10 days!  I don't feel comfortable flying with Lucy yet - she's got medications and feeding tube supplies and a shunt and just way too much stuff for us to fit into 3 suitcases!  So, we decided to drive to Virginia to visit Jason's family.

With Great Uncle Billy!

 

With Auntie Kitty and cousins Ryan and Alana

Getting to know Grandpa Grover

Lucy did amazing in the car.  We tried to leave early afternoon, just before nap time and drove into the night so that she'd sleep most of the way.  We made the drive in two days each way, with a hotel stop for much needed stretching out space in between!  She spent much of the car ride sleeping, but entertained herself very well when she was awake (Jason will swear that she was awake only when I was driving so that he had the pacifier/entertainer duty!)

Dinner stop at Cracker Barrel in West Virginia

She also enjoyed meeting more of her relatives and continues to be such a joy to us.  We spent the last few days at the Virginia Duals wrestling event - her daddy was so proud to have her there with him!  She's getting to much stronger and rolls across the room when she's on the floor.  She's also getting much better at sitting up and loves to jump, jump, jump!  Her smiles light up her whole face and it's so much fun to be on the receiving end of them.

It's back to reality for us now, as we return to work, cold Minnesota weather and several doctors appointments over the next few weeks.

Happy New Year!

Wow! I cannot believe that it is 2013.  At this time last year, we were looking forward to welcoming a new baby into our home in 2012 - we had no idea that it would be such a challenge or that she'd spend 1/3 of the year in the hospital.  We didn't even know that she'd be a girl named Lucy!  We were reminiscing on the year and that first doctor's appointment when we found out about her hydrocephalus and remembered that they told us we had to decide if we wanted to continue with the pregnancy.  What a terrible tragedy it would have been never to have met baby Lucy! 

It was definitely a year of highs and lows for us as a family - from the joy of a new life to the sorrow in knowing that she will have a difficult journey through life.  From the excitement of moving back to Minnesota to the sadness of leaving our first home - where we lived after we got married and where we brought Lucy home for the first time. Jason and I are both glad to put 2012 behind us and to look forward to 2013 and getting re-settled back in Minnesota.

Hanging out with cousins Ashley and Preston on Christmas

I know that every parents says it, but we really cannot believe how fast Lucy is changing.  She definitely tells us when she is mad or happy and is getting very vocal.  She loves to be entertained and will almost always reward us with a huge grin or a little giggle if we are funny enough.  She LOVES her feet and changing diapers has gotten to be a bit challenging because she just can't lay still.  She's close to sitting up by herself and is getting an army crawl of sorts down to move herself around.

Watching wrestling with daddy...

We have a brief break from doctor's visits over the holidays.  Eating continues to be our biggest challenge; we have an appointment with the Gastro doctors in a few weeks and hope to get some ideas for how to move forward with more oral eating and less feeding tube eating.

So, from us, to you, Happy New Year!  We wish you and your families much health, happiness and many blessings in 2013!

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.