The trial

Our journey into the a tube free Lucy lasted only four days.  Although the answer to our prayers was 'not now', she did a really good job.  

On Saturday she drank almost 10 ounces of fluid and ate 3 tablespoons of puree foods. Sunday she increased her intake of fluids to almost 15 ounces and ate roughly the same in puree foods.  Then Monday we hit the wall.  She barely drank 4 ounces of fluids and eating was starting to be a struggle.

Then that night she got hysterical.  We managed to calm her and got her to consume another 4 ounces of formula.  Tuesday she had gained a little bit of weight but was close to her cut off weight of 7.3 kg.  Tuesday was a mirror of the day before with struggles to get her to drink and eat anything.

After many emails with the team, we knew Lucy could not sustain this.  That night we placed the tube, gave her about two ounces of water and did a night feeding.  We are back on our tube schedule and Lucy is eating well by mouth.  We aren't sure when she will be ready, but the best news is that we can do another trying before heading down the path of surgery!

We learned a couple of things.

1.  Eating takes a lot of stamina and strength

2.  Lucy has the skills to eat and drink

3.  Lucy does not have the stamina or strength to do this on her own

4.  I cry a lot

5.  We need to focus on getting Lucy to drink

6.  The tube is not bothering or hindering Lucy from eating and drinking

7.  Surgery is no longer a necessity (Lucy may just need more time to practice)

8.  The NG tube is not that bad

We loved seeing her entire sweet face for four whole days and we can't wait until that is the norm.

But for now, these will have to hold us over.

Months seven through twelve and a trial

We still haven't made it to get professional pictures.  Who knew working up to pulling the NG tube was going to be all consuming.  When we are not in her high chair coaxing her into sips of formula and bites of food, we are offering water and snacks through the day.  We are constantly thinking of new ways to introduce food and little tricks that will increase her intake.

It looks like this weekend is a go.  Leading up to this 'trial' has been slightly emotional.  I'm a little boggled by it too.  I can go into surgery day and not shed a tear, but every time I have thought about pulling the tube my eyes well up (they just did right now typing this).  I don't know if it is because during surgery it's out of my control, my trust is the skilled doctors.  Where as this trial is on us.  If Lucy isn't successful, we failed. 

So today I am trying something different.  When I start to feel emotional, I am going to repeat Jeremiah 17:7.
      But blessed is the one who trusts in the LORD, whose confidence is in him.

I am hoping this will ease my anxiety as we pull her NG tube tonight and wade into a weekend of unknown.  We will need all the prayer support we can get.

Pray specifically for Lucy to drink!  We need her to drink 20 ounces of formula to maintain her weight.  We understand the first day will not be that much but if we could do half of that we could consider it a success.

Pray that Lucy can take all her medication orally.  We have been practicing so we hope for an easy transition.

Pray that she can start to understand what hunger pains are and that drinking and eating will make them go away.  More or less, pray that this whole eating thing just clicks.

Pray that Mike and I stay calm through this trial, as that will be what Lucy needs most.


Anyway, we are still taking plenty of pictures on our own and boy is she changing.

September

October

Lucy seemed to go from baby to toddler between these two months



November



December

January

February

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.