Care Conference


Journal entry by Jordan Heyer —
Today we had a conference with all of Brielles doctors, going into it we were both scared and anxious. Coming out of it we couldn't keep smiles off our faces. We went over her brain defect which was a huge part of the meeting mainly because it'll be the longest lasting and non-curable defect. Basically we won't know how it's going to affect her until it affects her. Simply put they're treating Brielle, not pictures of Brielle. So just because the signs are all there in images, if she isn't seizing or having abnormal hormone levels there is really no reason to treat. It's another "we won't know until we know" but I think we're a little more at peace with this unknown because it's not life threatening and all the side effects have treatments. The cardiac side of things didn't get to in depth simply because we know what needs to happen it's just a matter of when. Although up until today we thought they would do it shortly after she reached 4lbs, but the plan is to push it off as long as possible so she can best tolerate the operation. If the situation presented itself and she needed it sooner obviously they would make it happen, but idealy they'll wait until even after she is discharged to operate. On the respiratory side of things they are very pleased with her progress, the symptoms of pulmonary hypertension have subsided and she needs just as much respiratory support as a "normal" 29 week baby.


Brielles progress and stability is something I don't think any of us could have expected so soon, obviously we kept high hopes and faith but it's truly amazing, at least to me, that a baby that was given no chance by physicians is now almost thriving given her conditions. God works in mysterious ways. We are truly spoiled with support and so blessed that so many people care and pray for our daughter everyday.


Keep the prayers coming and I'll keep the updates coming!


P.s.-We got to hear our baby girl "cry" for the first time today :-D

(taken from CB) 


                     

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