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.