Well, it seems that the info I was given last night about the removal of Asher's vent tube, as well as his chest drainage tubes was WRONG! What a let down ;( There was a new doctor on the floor who came up with a "plan" to remove the tubes by Monday....thing is he wasn't familiar with Asher or his past history. So, that "plan" is being ignored and we are now looking tentatively at Thursday. Asher's lungs are looking good, but we have to make sure his chest is done draining before they can take him off the ventilator, otherwise, the fluid buildup could cause him more resistance at a time where his lungs would be working all by themselves. So, as bummed as I am at having to wait longer....I completely understand the reason for the extra wait and I'm OK with it.
This afternoon when we visited Asher, he was receiving 3 ml of Breast milk an hour and we were stoked because they were now going to increase him 1 ml every 6 hours. Well tonight they said that they found cloudy fluid draining from his chest tubes which means that he isn't processing the fats in the breast milk and they are collecting in the space around his lungs. This is a major problem and can be life threatening if left untreated. So, the news that I have been dreading came this evening...they are taking him off the breast milk, that I have been faithfully pumping, and putting him on fat free formula. I cried when Matt told me the news. I know many people aren't going to understand what the big deal is, but I understand that there is a WORLD OF DIFFERENCE between God formulated breast milk and man's formula. God designed breast milk to provide natural immune building properties to baby's new system. He also created breast milk to provide exactly what that baby needs. As he grows and his needs change, the milk changes right along with him. With Asher's chromosome disorder, immunodeficiency is a common symptom and many of these kids deal with frequent sicknesses which can land them in the hospital on a regular basis. Being able to provide milk for my son was a way for me to give his immune system the best start possible, even in the face of the possible deficiencies he may encounter. That's why it broke my heart to hear that he wasn't tolerating it at this time and that he was going to miss out on the INCREDIBLE life giving benefits! On a more personal level...I was looking forward to cradling my little guy as he nursed and attempt to make up for the time we have lost together....and that special time seems lost to me now. I know I will still be able to hold him and cuddle him as I bottle feed......but it isn't the same and only a Breast Feeding momma would truly understand. Matt spoke with Bill, the night nurse who takes care of Asher most nights, and he said there have been cases of mothers being able to nurse their babies after leaving the hospital That is the only high point that I can grab onto right now. So, in faith and high hopes of reaching that day....I will continue to pump. Please join with us and
Pray that Asher will assimilate the fats and be able to start taking the breast milk again!
Pray for wisdom on behalf of the doctors to try him on breast milk again and not just leave him on the formula as their procedures will most likely mandate.
Regarding what needs to happen in order for him to come home:
Pray his chest tubes indicate no more edema in his chest so that they can come out.
Pray that he have no complications when they remove the ventilator tube ...and also strength into his lungs to bear the weight on their own.
Pray that he have no feeding issues
Well, that's it for now. I'm falling asleep as I type this...so I'm off to bed. A quick thank you to those who have brought us dinners. They are a tremendous blessing and we all greatly appreciate the effort!