Friday, June 26, 2009

More Nutrition For Lillie Through Her G-Tube !!!

I am not sure if I had mentioned in past posts that Lillie has lost 1 1/2 pounds in the last month since we took her off certain foods and switched her formula.Iam not sure why but Lillie does not drink her new formula like she did when she was on Pregestimil. I have been feeding Lillie anything she can at this point.I let her eat when she wants to due to the fact she is so limited to so little and may be limited to less in about a week when she gets tested for her fruits and veggys!

It takes Lillie 3-4 months to gain what she lost in a month!So as you can see its not good at all for her to lose when it is already hard for her to gain in the first place!Lillie hit 20 pounds in the begining of march and went up to 21 1/2 lbs within 4 months and she is now at 20lbs as of today Lillie is 2 years 8 months and will be 3 in November :)I think she might be getting taller Iam not sure though!As long as she is happy and not in much pain:)Iam happy for her!!

She is still getting pains in her hands and feet and I will be talking to her Dr about what can be done to help her with the cramping.
div>I called her Dr at Children's and She said Lillie needs to be taking in 35-45 oz of formula a day!and Lillie doesn't want to drink that much!I actually thought about it and I asked myself if I was allowing her to be a stinker by not drinking her formula and I thought about it and asked myself "would you want to drink milk all day long and nothing else"NOPE I WOULDN'T!! Lilllie only drinks about 4-6 oz per drink so really that's all I would or could give her by mouth if I wanted her to get all the nutrients she has to get to thrive a day!So she will be getting feedings through her G-tube.Her doctor said to do night feeds but we switched it and I will be giving her as much I can during the day and at nap time then the rest at night!We have a back pack that is especially made for her machine so she can wear it and be getting feedings at the same time.The reason I want to get half during the day is because the machine will beep any time it gets clogged or the tube gets pinched and usually that means getting up 3-4 times a night to make it stop beeping!Lillie usually wakes up every time it goes off and Lord knows she needs all her sleep and so does mama:)The doctor said her formula is her source of all nutrients because the limited foods she is on as of now is not enough for her body to thrive the way it needs to.So we will be adjusting to the new change of being on the feeding tube once again and I don't have any idea how long but something tells be it will be a long time from now because I had seen her being on her feeding tube as soon as her doctor changed her diet!
I thank God for the new unexpected changes because every time he changes things with Lillie he does something new in my heart as well :)his plan is perfect always!!


So I thought I would tell you how Lillies first night back on the g-tube last night! When she woke up this morning we heard Lillie at her door!let me remind you Lillie is in a crib due to her being on the tube and us not wanting Lillie to move around and get out with her tube attached to the machine!I guess we couldnt stop that this morning!So when I went in her room not only was she out of her crib she was not hooked up as well YIKES!!!When I went to look at her tube in her belly....IT WAS OUT OF HER TUMMY!!!YIKES!!She pulled it out when she climed out of her crib and it must have pulled it out then :(.So we put a new one in and she did really good while Tony and I put it back in.It was a blessing though that the machine didnt go off one time last night and that is not normal! but her climing out of her crib and pulling her tube out in the process is not normal either lol.God is very funny sometimes in the ways he blesses us!I was able to sleep and being able to rest and then he let the crazyness happen when I woke up lol:)Iam thankful for my rest!So needless to say Lillie got some great intake last night through her tube.


lisha said...


Mooing Joyfully said...

I like your new blog look. I see your love for God and how he is growing you in the ups and down with Lillie. It is so evident in your writing. Your in my prayers. Love you!!

The Pichura Family said...

Wow, Crystal!!!! Thanks for giving us all just one more reminder (as though we really needed it! :) ) as to why we need to be praying for you guys!!!
Love you!

clmichel said...

Responding to your comment on my blog: The Ph was a scheduled test. Haven't they done it w/ your daugher? And yes, we are up almost nightly with our son. I don't really know why most of the time but it looks like you are dealing with nightly issues with the G-tube. I'm sorry. I've worried sick about going to a tube but his docs are pretty against it and Taegan is doing pretty good lately. What formula is she on? Do you mix anything w/ it? My son likes it much better mixed w/ some vanilla rice milk or oat milk. We have had our moments of him refusing the bottle and I can spend hours trying to get him to eat but he's doing fine at the moment. Sorry for your struggle w/ the formula. I think you can only truly understand if you've gone through it. This disease can sure be stressful and exhausting. I hope she will eat better for you.
Thanks for your support and good luck.

For His Glory said...

Oh my Word! Her G-tube was out!~!! Waaaa...I get the eebie jeebies just thinking of it!! But you just have to take care of it right away and not even think about it...I am so thankful you know Jesus and His peace...Lillie is God's and so are all of our children. He created them for a purpose and that purpose is glorify and enjoy HIM, and it looks differently in each child who is trained to understand this truth...Love you