Anna Grace had an indepth hearing screening this morning in Greenville. She had a newborn hearing test in the hospital in Charleston and passed it, but it is standard practice if your baby has been on heart/lung bypass to have an indepth hearing screen because apparently that can cause damage. So, off we went to Greenville for a lenghty test. Anna Grace did great for the test - she creid a little at the beginning and then settled down after about 10 minutes and some sweet singing from Daddy :) Then she slept for the remainder of the test. She passed the hearing test in both ears and we were sent on our way. The test lasted about an hour and I am thankful that it went so well for the actual test and that she has good hearing in both ears.
Anna Grace has been extremely fussy these last few weeks because this formula she has been on (Portagen) is quite awful on her tummy. It gives her diareah and makes her throw up. I think it also makes her stomach cramp and I said to Brian the other day that basically if she is awake she is crying. Brian said that was an exaggeration, and it might be to some degree, but she really doesn't tolerate the Portagen well at all and cries most of the time she is awake. So, just to clarify, she has to drink the Portagen becuase she developed a condition called Chylothorax as a result of damage done to her lymphatic system during her open heart surgery. Chylothorax is a condition that means that her body can not process fat. If she eats fat then it dumps the fat into her chest cavity in the form of fluid build up around her lungs. This fluid accumulation around her lungs causes her not to be able to breathe. So, it's not that her tummy can digest the fat, it's that the fat causes fluid build up around her lungs. So, there are only two formulas that are produced - one is called Infaport and the other is called Portagen - these formulas are prescription only formulas and they are made with medium chain fatty acdis as opposed to long chain fatty acids that you find in breast milk or regular formula. The Infaport is designed for babies 12 months and younger and the portagen is for babies 12 months and older. Well, in the hospital we tried the Infaport and she cried & cried and vomited the whole time she was on that one. So, we switched her to Portagen. She has tolerated it better than the Infaport and since there is no other option that is where we remain. Anyway, the doctors said that sometimes the lymphatic system can heal itself if given time so they said after 6 weeks on the Portagen that we can reintroduce breast milk again. So, this coming up Monday (March 1) will be 6 weeks since she has been on the Portagen so, Monday we can reintroduce the breast milk. I am asking you to please PRAY that the Lord has healed her lymphatic system and that she will be able to process that fat in the breast milk that we give her starting Monday. If not, then we have to go back to the hospital for another chest tube to drain the fluid from around her lungs and then she has to go back on the Portagen formula. I hate the Portagen formula - even more than the chest tube. Strong words I know - but it makes her so sick, it makes her cry, it makes her vomit, it is so awful - I dread it each time I have to feed her. She cries because she's hungry and then she cries because she ate the Portagen and it makes her sick. Please join us in praying over this for Anna Grace.
3 comments:
Tina I will pray for her body to accept the breastmilk and to get stronger each day. Thinking of you daily and praying daily.
I have been praying for your lil Angel. I dont know if this will help at all.But here goes. My first son was a colicky baby. He was on every formula until my mom suggested that the iron in the formula might be upsetting his stomach.When he would poop it would sound like the diaper was gonna blow off.When he spit up it would fly out of his mouth and cried all the time. When he was 3 mths old I gave him enfamil low iron which I dont even know if they still make it. That was the first time he slept thru the night. All the tummy problems stopped. I dont know if this will help any but just a suggestion. I hope and pray your sweet baby will soon be able to tolerate formula or breast milk soon. I know this is hard on you as a mother. My prayers are with you.
We're praying for you and asking Jesus to heal her little body and give you comfort!!
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