Lucy turns one and crawls

Lucy turned one year old on Friday the thirteenth at 11:35 am.  We celebrated in style with a small party and some cupcakes.  Lucy could not get enough of the attention.  She smiled straight for three hours and then hit the matress hard.  She opened presents but in true baby fashion was more interested in the tissue paper.

Our Birthday girl, wearing red for CHD awareness week!

I want to say that this past year has been the hardest of my life, but I am all to aware that our future is uncertain and that this year could pale in comparison.  There were a lot of lows, but as I look back at the last six months, Lucy has become this smiley, happy, a little too smart for her own good baby.  She is learning to play by herself, loves to be frightened and smiles at anything you sing to her.

We have been slowly gearing up for our NG tube free trial.  I have been told my expectations are too high.  Or at least our speech therapist thinks so.  Every session, I think is just so so....she says Lucy does amazing.  I have been slowly working on that.  Two weeks ago nutrition came on to help as we head towards a tube free Lucy.   My main goals were for Lucy to recognize hunger cues and to decrease frequency of tube feedings.  Our first change was to stop the 5 am feeding for a week to see if Lucy would be hungry in the morning to consume three ounces of formula and still eat some food.  Unfortunately, even without the feed we are not seeing her change much in the way of morning eating.  We have been better about offering her drinks of water through out the day.  She will usually take a sip or two then any sips thereafter are spit out for fun.  One evening she managed to sip three ounces of pediasure and dribble it down the front of herself.  Talk about a sticky mess.

I am enjoying a little more sleep in the morning so we have decided to discontinue the early morning feed and increase her calories per ounce to twenty seven.  As we increase calories we can decrease her volume.  With little progress, our nutritionist asked if we were still ready to do a trial.  Although I am terrified, Mike and I feel it may be the only way for Lucy to really get this eating thing.

The other change we started was giving her some medications orally.  Without the NG tube Lucy will have to take all her medication by mouth.  As of now, she takes five medications and a vitamin.  For the inital trial we will decrease to only the two medications that are absolutely necessary for her heart.  If Lucy does well and we continue on past a trial phase we will introduce the remaining ones.

We have been told that the first couple days are really hard.  The likelihood that Lucy will barely eat the first day is very high, which will lead to a lot of crying.  Add in shoving medication in her mouth and well, you can get the picture.  We will meet with speech and nutrition next week to decide on a date to pull the tube.

Lucy has been working hard at learning to crawl.  For the last two week she has been rocking on all fours and every once in awhile moving one hand forward before sliding into tummy position and rolling over on her back.  Then last saturday night as Mike and I were both in the family room together she crawled.  About three paces.  We were glad we both got to witness this at the same time.  We have been able to get by this far without 'baby proofing' our house.  But it seems that baby gates and outlet covers will now be the norm.  Our physical therapist said that usually late developers take a little longer to walk.  This is because they realize walking leads to falling, so they wait until they have it mastered before they fully let go of whatever they use for assistance.  I'm not sure I'm ready for a walker....so take your time little girl.