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.