Charlotte is busy being a baby...a good baby. She knows all the right moves like 'eating,' breathing and pooping. She continues to gain weight each day. Her goal is 20-30 grams/day and she has been exceeding her goal like a champ. So we are just soaking in all that is her life right now since we are able to hold her ANYTIME we want. We can even change diapers! Who knew that we'd want to do that? And thanks to a very nice night nurse, Mommy has gotten to give Char Char a few baths. There's nothing like a clean, yummy smelling baby, is there?
Currently she is receiving all of her nutrition through a nasal feeding tube but on March 30, she'll have a permanent feeding tube put into her stomach, called a Gtube. Permanent in that it is there for as long as she needs it to take in her daily caloric intake. Semi-perm in that it goes bye bye when she can take all nutrition by mouth. It will allow us to feed her directly into her stomach while not burning unecessary calories attempting to eat by mouth. We know that heart babies face a mountain of challenge in regard to eating by mouth. It's as if they run a marathon each time they drink from a bottle which after a certain amount of time, only becomes detrimental instead of beneficial. The Gtube allows for Charlotte to gradually learn to suck-swallow-breathe. In the future, should she become too fatigued eating from a bottle, we will have the advantage of feeding the rest of her meal via the Gtube. This will be our norm until she is able to fully accept all meals through her mouth - by bottle or fork!
We pray that she continues to thrive via the temporary nasal feeding tube until the 30th, as well as post surgery with the Gtube. And we pray for Charlotte's recovery, as well as that of our family's.
As always, your prayers continue to carry us. And words will never fully express just how full our hearts are thanks to your generous spirits. May God bless you.
Currently she is receiving all of her nutrition through a nasal feeding tube but on March 30, she'll have a permanent feeding tube put into her stomach, called a Gtube. Permanent in that it is there for as long as she needs it to take in her daily caloric intake. Semi-perm in that it goes bye bye when she can take all nutrition by mouth. It will allow us to feed her directly into her stomach while not burning unecessary calories attempting to eat by mouth. We know that heart babies face a mountain of challenge in regard to eating by mouth. It's as if they run a marathon each time they drink from a bottle which after a certain amount of time, only becomes detrimental instead of beneficial. The Gtube allows for Charlotte to gradually learn to suck-swallow-breathe. In the future, should she become too fatigued eating from a bottle, we will have the advantage of feeding the rest of her meal via the Gtube. This will be our norm until she is able to fully accept all meals through her mouth - by bottle or fork!
We pray that she continues to thrive via the temporary nasal feeding tube until the 30th, as well as post surgery with the Gtube. And we pray for Charlotte's recovery, as well as that of our family's.
As always, your prayers continue to carry us. And words will never fully express just how full our hearts are thanks to your generous spirits. May God bless you.
you're on the right track Charlotte! keep up the great work. so happy that you're able to love on her, change her, bathe her and hold her! we all know a mothers touch can have great healing powers:) keep up the good fight, everyone! the trip home gets closer with every passing minute! love and prayers continue!
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