Day of Life #294.. And just when you thought it couldn't get worse

Evening Everyone!
 Regretfully we do not have much better of a report to share today.

Since our last post Madeline had been doing pretty stable- They slowly worked her up on her feeds to a level that was tolerable- and she seemed like she was going to be home soon- The only challenge she faced was that while she was tolerating her feeds, Doctor's were not sure if she would be getting enough calories per ounce to actually keep gaining weight.. however they had been discussing a possible discharge of TODAY-

Of course hearing those words we were actually a bit nervous as we did not want to go home and turn around again and be back in the hospital especially because something just seemed not right with Madeline this weekend.. she was sleeping A LOT- was starting to get a little CRABBY.. and her eyes were SLIGHTLY sunken in. But they checked her labs last night and everything was normal. Overnight she was up several times crying and it seemed like her stomach was bothering her... Our favorite renal Dr. was on today and we mentioned the concerns and he checked her out right away and noted that her stomach was a bit tender and she was DEFINITELY not herself.

During rounds they decided she would not go home today simply because of the issue mentioned above with trying to determine if she needs more calories to grow and how to go about that (the only way to increase calories is to either increase volume or concentrate her formula..last time they tried to concentrate her formula was when we turned right back around for dehydration so it is kind of a big decision)... they decided they would consult with GI and go from there...

not more than 2 hrs or so later .. Dad called mom and let her know that Maddie had a temperature of 101-- They ran a bunch of tests and all signs point to Urinary Tract Infection ..Because of the constant fever that is challenging to get down and her other history and tenderness of the belly they have reason to believe this could be a kidney infection- They will discuss tomorrow whether or not to do a kidney ultrasound tomorrow. They started treating her for UTI right away because they are worried about her kidneys and preserving what little function she has left. They gave her a dose of antibiotic.. .Well surprise surprise Madeline had a reaction and has 'red man syndrome' .. lots of scratching , warm to the touch and redness.. . apparently this is very common so they gave her a dose of benadryl to calm things down and make her feel better.. she is resting peacefully now...poor thing...

So that is the state of things thus far.. as time moves on things can get pretty disheartening but we have to try to focus on the blessings in all this. .the good friends and family who have been there through all this with us.. the other families we have met who also have been struggling...the shared bonds.. and the greater appreciation for life... Cannot express how valuable a single walk around the block seems to us.. or being able to be together in our own home.. the comfort that a hot breakfast freshly made is ..all the things we used to take for granted. .

Mom's birthday is next Friday.. here's hoping that her birthday gift is Maddie home !!

We still trust in God and know that no matter how hard this gets or how down we feel that he has a plan and is watching over us and that there will be an end to this at some point .. of course never soon enough for us humans but all in his time.

GREAT NEWS we also wanted to share that we were told yesterday ADALEE IS HOME SNUGGLING WITH MOM AND DAD! Thanks to all of you who have been praying for her. we KNOW it helped! Please continue to pray for her improving health and for no hospital visits in the near future. .

Thanks to everyone who continues to stand by us and offer a lending hand when needed whether it be a hot meal. stopping by the hospital to keep an eye on madeline.. someone to listen to us on the days we don't feel so positive. or just a kind word.

THANK YOU!!