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!