It's official

It's official!  I am not longer scared to death of the NG tube.  Since coming home back in May every time the tube needed to be changed I made sure there was an appointment to coincide with the change.  Through her first ten months she pulled it out once at home.  It was quite the debacle.  It took my mom and I three tries to get it right and ended with a broken vase and five votives.  I really should be thanking the oxygen cannula for it's service of making it hard for Lucy to get her hands close to the NG.  However, since coming off oxygen Lucy has given me some practice and pulled it out three times.  The first time was at eleven at night and half asleep I just pushed it back in.  The second time she was due for a change (roughly every thirty days), my dad and I removed all the tape and put a fresh one in.  The last time was that same night.  Since, we have graced her with a tape moustache and we haven't had another incident.  I will still be glad when we are done with it!

Showing off her moustache with a selfie

We had our first follow up appointment with cardiology since coming off oxygen and her SAT were ninety percent!  She is over seven kilograms (15 lb, 8 oz) and twenty six inches long.  We had an echo and ekg, both looked good.  The bad news is that over the course of two months the coarctation of the aorta has narrowed.  This was ballooned back in November.  The doctor said we will follow up in a month for another echo and if there is more narrowing we will need to intervene.  What that means right now, I'm not sure.  Possibly a stent.  What I do know, is because of the trouble they have accessing with a catheter, it is likely they will need to make an incision to do whatever needs to be done.

Therapy has been going very well.  Both speech and physical therapists are impressed every week with her progress.  We can thank our parents for being so diligent in doing her exercises daily to help her get strong.  Lucy so desperately wants to be mobile.  We are so close to crawling.  We have started some sit to stand exercises as well and she loves to be standing.  It will be nice in the new house she will have a huge family room that is all carpet as her playground.

Back in October when we has our evaluation with Laura (speech therapist) we talked about the G-tube and the likelihood of having surgery was very high.  This was because Lucy's oral aversion was so bad.  Two and half months later, Laura is telling us her progress is so great, that a trial without the NG tube is very possible before we go down the road of surgery.  Although I know this doesn't mean surgery won't happen it is something we very much want to try.  If there is anyway we can avoid surgery we will try our hardest.  She is now tasting a lot of different table food: avocado, noodles, tuna, chicken, baby puffs, cheese, yogurt and usually a bite of whatever I'm eating.  Our biggest struggle will be drinking as she currently doesn't really do any of that.  The next couple weeks will be working to get her taking sips of milk and water using sippy cups, regular cups or even straws.  Whatever will do the trick.

Lucy has figured out that cameras mean smile and she really hams it up.  She hasn't quite figured out the flash, so we have many, many shots of a blinking baby.

We would like to thank all for the prayers surrounding our housing situation.  Prayers were answered and we will move next week into our house.  We are beyond excited for the extra space.
As we venture into the new year, please pray that the narrowing in Lucy's aorta does not need more intervention and that her eating and drinking continue to progress.

reflection

I took a class at church about seven or eight years ago and the instructor told a story about how he kept a prayer journal.  During the years he would go back and check off all the prayers that were answered.  What an awesome idea and trust me, it's hard to do.  I've started at least four of them.
Then I realized that this blog is just that and I have a record of the prayers we've asked for (except for some of the simple ones, like please let her sleep through the night).

So I read the entire blog.  Sometimes I can't even believe we have been through all that.  I took all the prayer requests and compiled them.

For her growth and movement, improvement over the last week and continued activity
For blood flow through the umbilical cord
For our doctors that will recommend what is our best option
For Mike and I as we learn about our options and have to make a decisions.
For Mike and I to have a sense of peace and calm as we work our way through this unexpected news.
Prayer for her stability and as much peace of mind for Mike and I as possible.
Pray specifically for a room to open up at the Ronald McDonald House,
For Lucy's strength
God's hand over the doctors and nurses that are treating her.
Prayers for patience during this process are much needed!
Strength for Mike and I as we wait through surgery
God's watch over the cardiologists and surgeons as they perform the hybrid procedure
For Lucy's strength and quick recovery
God's hand over the entire process
Strength for Lucy as she deals with this trauma and a healthy recovery
Strength for Mike and I as we deal with each day as it comes.
 as we continue to commute to the hospital and get limited time with our daughter.
God's watch over Dr. Ilbawi and his team as they perform the Norwood procedure
For Lucy's strength
Strength and peace for Mike and I as we wait through surgery
God's hand over the entire process
As I am nearing the end of my leave, we ask for prayers for a clear plan for Lucy's care.
Pray for her ongoing recovery and continued strength for Mike and I.
Prayers for Lucy's irritability.  That she can be calm and is able to get some rest.
Pray for Lucy's continued progress and for a easy transition to home living.
We ask specifically for prayers about Lucy's heart function.
Prayers for God's hands on all aspects of the surgery Wednesday would be greatly appreciated.
Please pray that a heart become available for this family and for the family that decides to donate the heart!
Prayers for direction on selling the condo and buying a new home would be greatly appreciated.
Prayers for a successful procedure and a good night's rest for Mike and I.
Prayer for a safe and successful surgery and some peace and understanding as we deal with this unexpected news.

As I read through all of these I notice most were answered, maybe not exactly as I requested and some still might be a work in progress.  Um, my patience and understanding.  So many times when prayers are answered we forget to sing praise.  So thank you to all who prayed so diligently throughout this year.  Praise God for giving us (and mostly Lucy) the strength to make it through this year.  Here's hoping in 2015 Lucy can be less of a warrior and more of a kid!