Day Surgery = Long Day!

Tuesday was a very long day for our family.  We had to be at Children's in St. Paul at 6:15 in the morning for Lucy's pre-op before her procedures started at 7:45.  I was able to go with her into the Operating Room and hold her while she had the anesthesia administered.  It was uncomfortable to know that she was going under while I was there, but I was glad to be with her right before she fell asleep.  Everything last for about 4 1/2 hours total and we were home by 4 pm.

She's had a bit of a cold for the past week, so we weren't sure they would be able to do all of the tests, but she was a champ (as always!) and handled everything very well.  All of the staff told us what a precious daughter we have.

Reading a recipe to grandma

Here is a run-down of what she had done:

 - ENT -Laryngoscopy and bronchoscopy, in which they scoped her trachea and vocal chord area to get a better understanding of what the anatomy looks like and take some baseline pictures.  The severity of her tracheamalacia was confirmed and we were able to see pictures of what her windpipe looks like when it is almost closed - kind of amazing she doesn't have more issues with her breathing when you see that picture!  We will follow-up with the doctors in the next few weeks to understand next steps.

 - GI - Performed an endoscopy, in which they scoped her esophagus to take a look at her surgical site.  They confirmed that she has an esophageal stricture - or a narrowing of her esophagus.  This is not unheard of for babies with TEF repairs, however, hers looked to be quite narrow - the doctor used "pinpoint" to describe how narrow it was.  She was very surprised that Lucy had been able to handle any baby food at all, as she believes that it would be very difficult to pass through that narrow of an opening - but we all know that Lucy is an amazing, determined little girl that has been surprising us for months!  She will have another swallow study in a few weeks to understand how her system works when solid foods are handled and she will likely need to have her esophagus dilated over a series of procedures so that it is wide enough to handle food more comfortably.  Oh, and she had a new feeding tube button put in...I won't go into the saga about the button, but lets just say it definitely did NOT fix the leaking problems.  More on that in a future post, as I'm sure it will continue to be a challenge for us.

 - MRI of her brain and full spinal column.  We will meet with her neruosurgeon next week to review the images

 - Adjustment of her shunt.  After MRIs, the type of shunt that Lucy has needs to be reprogrammed to the correct level because of the magnetism in the MRI machines.  Typically, it is set at 1.5, but after the MRI, it was at 2.5.  Her shunt is super easy to reprogram - it just requires an medical staff member to put up a special magnet and it adjusts itself internally!  It's amazing technology and makes having necessary tests like MRI's easier to handle.

We are encouraged that we are another step closer to understanding Lucy's eating challenges, but discouraged that she will need to have further intervention to get everything working correctly.  This trip reminded us of the long road ahead of us as we continue to address Lucy's physical needs.  To be with her on a daily basis, it's so hard to believe she'd got all this other stuff going on.

Reading and Relaxing with grandpa

Oh, and in case you are wondering, I continue to talk with the insurance company at least daily.  UGH!  I am reminded that this journey is also about waiting on God and trusting His plan for our lives.   I thank him daily for renewing our strength.

Isaiah 40:31
But those who wait on the LORD shall renew their strength; They shall mount up with wings like eagles, They shall run and not be weary, They shall walk and not faint.

8 Months Old!

Little Lucy is 8 months old...and in case you are counting (because you can bet that we are), she has now been home just as long as she was in the NICU.  WOW!  I think of the last 4 months that we've had her home with us and cannot believe that she spent those first 4 months in the NICU.  It's SOOOO much better to at home with mommy and daddy!

We celebrated the occasion today by a trip to the pediatrician for a pre-op before her brain and spine MRI, bronchial scope and GI evaluation on Tuesday.  It will be a long day for her but we are very glad that neurology, ENT and GI were willing and able to coordinate several procedures on the same day so that she only has to have anesthesia one time instead of several.  Neurology will be looking at her brain structure and evaluating how it is developing in the 5 months since her shunt was placed as well as taking a look at her full spinal column. ENT will be putting a scope down her trachea to evaluate her tracheomalacia and GI will be looking at her surgical site and also putting in a new feeding tube (Yay!  We are hoping it will leak less, fit better and allow us to not have 1/8" thick foam padding on her site constantly so that her skin can breathe).  So, all good things to help her in her growth and development, but no fun for her (and us!) to have to go through.

We also had a hearing evaluation today.  The results were OK, not great.  However, Jason and I are not sure how well you can really evaluate an 8-month old's hearing.  We sat in the middle of a tiny (very hot!) room and there were speakers on each side of her that she was supposed to look at when the audiologist made a sound.  Well, if you know Lucy you know that she is extremely visual and also that she likes to finish what she is doing before moving on.  So, she wasn't the best pupil in this type of situation.  We'll likely re-evaluate at some point in the future to determine if there truly is some type of issue that needs further investigation.

Last week, Early Childhood and Family Education (ECFE) sent someone out to our house to discuss Lucy's development and determine if there are early intervention programs that we should be involved in.  We will likely have a more formal evaluation sometime in the next few weeks and make a plan of action from there.  Since Lucy's physical development is so on target right now, we may not need their services until later in her life, but we've heard it is an amazing program to get connected with early on so that if she does need special accommodations once she is school-aged, we are already connected and the program is aware of her background.

We also have an appointment with the Feeding Clinic, but not until the end of next month - I'm not sure if they are a small group or just extremely busy, but that seems like a long time to wait.  In the meantime, she continues to eat a little better every week, even if it is just an extra mouthful above what she did the week before.  She loves carrots and sweet potatoes and if her little body didn't reject it, I think she'd be a great eater!

Also, we switched insurance companies since our previous insurance was with Jason's job in Colorado.  WHAT A PAIN!  We are back to square one with getting her RSV vaccine approved and she will likely miss her February dose because of the red tape we and the doctor have to go through.  In addition, they cover home medical supplies differently so we are out of supplies as we wait for them to get approval to send us her feeding tube supplies.  UGH!  I feel like they are definitely hindering the medical process and not helping it in any way.  But, health care reform is a rant for another day, another place!  We try to remember that above all we are grateful to have such great private insurance that provides for a large majority of Lucy's medical bills.  Through all of our days, we strive to remember the words of Jeremiah 29:11 - For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.

Uffta!  That feels like a lot - no wonder I feel like we've been busy lately!  We are all excited for winter to be behind us and to be able to go outside and take walks and enjoy the sunshine.  Until then, Lucy's smile continues to bring sunshine to our lives!

Pigtails and Teeth!

That's right...Lucy is growing, growing!  Even her hair seems to be getting longer and I put her in a pair of 9-month pajamas tonight!  There really aren't too many 7-month olds that can sport such adorable pigtails!  And...she has her first 2 teeth just breaking through on the bottom of her little gums.

We had a urology appointment last week to check on her bladder to kidney reflux.  She laid very still on her back while she had an ultrasound of her bladder and very still on her tummy while they did the same to her kidneys.  The results looked much the same as previous ultrasounds - mild reflux that does not need to be treated at this point, but will continue to be monitored.  Another doctor we don't need to follow-up with for 6 months - Woo Hoo!

We have started the process to have her evaluated at a Feeding Clinic - who knew it would be such a process!  It's not something we can call and get an appointment with...we had to leave our information on a voicemail, wait to get a packet in the mail, fill out 20-something pages of paperwork and keep a food diary for her.  Then, we had to mail it back and now we are waiting for them to review her packet and call us to make an appointment.  Uffta!  At this rate, she'll be 2 year's old before she even gets an appointment!  However, if their up-front thoroughness is any indication, they will be great to work with and I am really looking forward to having an expert help us transition her off of her G-tube for good!

Overall, we are just enjoying the days with Lucy and marvel at her development - it seems that every day she learns something new and can't wait to share it with us.  We especially love trying to figure out what will make her give us a belly laugh (turn up the volume on this video if you want to hear it - so cute!)  She is such a joy to our family and such a good baby.  What a blessing!

Busy Baby!

Lucy loves playing with Zoey the zebra!

Lucy is definitely at the age when it is hard to sit still...I have a sneaking suspicion it will be like this for many years to come!

How does this even happen?

Lucy loves hanging out with daddy in his "home office" - I'm not sure how her hair gets so wild though!

If you remember, Lucy HATED bath time when she was little.  She's a fan of it now - sometimes I think I end up more wet than she does!

She also has a tough time staying in one place when she's on the floor - she's definitely gearing up to learn how to crawl!

Grandma and Grandpa's dog, Rosie is a frequent receiver of Lucy's attention.  However, Rosie just ignores Lucy and if the baby gets to close, you can bet the dog will be moving!

Lucy is such a big girl when she sits in her highchair during meal time with us!

She is so good at sitting up on her own and loves to be up and able to look around!

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!