Good evening - I guess this puts us into day of life #16 but I only have a report for #15 right now. Madeline has been urinating more on the dialysis today- We believe she had close to 38 cc's all day today-Which is more than she did all week! Praise God!
Her heart rate is where it should be and her blood pressure has come down a bit but still goes up here and there. We have been trying to give her feedings every three hours (about 1 tsp) it is going so so. The first time we couldn't get her to wake up enough to eat it. She took about half of it and the rest we put in her NG tube. At her third feeding they found out that she had not digested the second feeding (it's kinda gross how they do it because they suction out whatever is in her belly through her NG tube to see what has processed, when they did that they found that the total amount from her second feeding was still there) -So they put the fluid/milk back in through the NG tube and decided not to give her the 3rd feeding. Her 4th feeding was at 11 pm - she still had 4 cc's of the 2nd feeding left in her stomach so they got rid of the old and gave her a new feeding. Unfortunately the nurse was not able to get her to take it from the bottle again, she just gagged - so she gave it to her in her tube, hopefully she will process it by her 2 am feeding!
Needless to say progress is progress. Everything is slow but steady it seems. We are so happy to see progress but also feeling a bit nervous/cautious- it was only last Monday that things had been looking up and then went very wrong. So we pray this is not the case this time. We are also very tired of living in the hospital and can be a bit cranky at times but we are trying to remind ourselves at those times how important this is for Madeline and keep hope that we will be home soon. It's hard to believe it will be 3 weeks soon already.
Lastly, We would like to also take time out to say a special thank you tonight. As we mentioned before our friend Nikki has set up a sort of Donation site for us to help cover expenses through all this. We were taken aback when she told us and so very touched as well. Nikki sent us some of those funds already which we received today and we were absolutely shocked at the generosity of those of you who chose to give to us in that way. As well, Nikki did let us know who had donated so we would be able to send you thank you's (don't worry she didn't say who gave what-) but we were very touched that there were a number of you of whom we have not been able to stay in close contact with over the years or maybe we don't know each other very well but you still felt led to share what you have with us. It is so kind and heartwarming- We are simply lost for words. The thoughtfulness of others has been overwhelming. We will be contacting everyone individually to express our gratitude (along with all of you who have been helping us out in one way or another!) but we wanted to let you know right away how much we appreciated the gesture.
We hope one day to be able to look back on all this and share this amazing story with Madeline, how much she is loved by so many, how your prayers and support have helped her and us through and how God provided for this family in so many ways. We will always be sure to remind Madeline how blessed she is and to be thankful for those around her.
All we've been thinking all night is how truly blessed we are- despite this roller coaster we have been held up and supported by so many-most importantly God.
Thank you all again from the bottom of our hearts.
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