Day of Life #21

Three weeks, we've been here three weeks, most dads are gone, back at work, mom is happily at home tending to baby's every need, sitting on the couch chatting with other moms, frequently calling dad and telling him about the latest dirty diaper, but not us. No, we're still at the hospital, it's crazy what can become normal, it was said once that it is not the strongest of the species that survives, nor the most intelligent, but the one most adaptable to change.

Even though our plan was balled up and burned at the bedside July 4, Rachael and I have found our way through life with Madeline just as other parents of special needs children do. God does not give us more than we can handle in life, and while our burden may be heavy, it was Jesus who carried the Cross, the ultimate burden, and made the sacrifice for us so that we could have a relationship with God, through Him, so that we can put our burdens on Him and trust in Him so that He may lead us through the trials we face in our life. Rachael and I are forever grateful for that, we hope that one day we can look back with Maddie at all of this so that she too can know how gracious our God is.

On with the update... Madeline is much more pale and puffy than she was yesterday, doctors are going to be monitoring her anemia and may start her on some injections that will rev up her red blood cell production. They are hoping to get her dialysis catheter pulled out today and end dialysis, her bowel sounds were not great today, very faint, but still there. She has not been processing the 2ml/hr very well and at one point this morning, feeds were stopped for an hour for her to catch up. Its pretty upsetting if you think about how small of an amount 2ml of milk is, and she is getting that over the course of an hour, and after 4 hours, she has 6ml sitting in her stomach undigested, very discouraging.

As far as ending dialysis goes, I think primarily they are wanting to get the temporary catheter out of her, it continues to be in an open wound and the infectious disease team is really concerned about maintaining that. They are going to pull it today and see what she does. God willing, her kidneys will ramp up to full processing and Madeline's body will start regulating itself, but regardless of how big of a smile the doctor uses when telling us this 'good news', I'm personally not as optimistic. She has continued to put out more fluid (dialysis and urine combined) than she is taking in, yet she is still getting bigger (puffier), and heavier every single day.

With all that said, Rachael and I asked the doctors what a realistic time frame we are looking at as far as Madeline coming home in a best case scenario. The answer was at the minimum, a month, probably two. That'll knock the wind out of you. Needless to say, Rachael and I are pretty upset, not only are we not getting the plan we had in our head to begin with, we now have to start planning our return to work, and go there, knowing our baby is still in intensive care. Thankfully our jobs have been very understanding at this point.

Coming up with a new long-term plan is not easy right now, with so many unknowns. ? It's all quite upsetting, but yet it's the reality we are faced with. Please God, show us the way. Right now we need prayers for strength, direction, and peace. The strength for Maddie to keep up the fight, to keep pushing, and to keep healing. The direction to keep our heads up to the Lord, to not waiver, and to trust in Him and His plan for us. And finally peace, let us put our burdens in His hands, let Him calm our hearts, so that we may keep our wits and strength reserved and help us make the right decisions.

Thank you all so very much. The people around us, the people who don't know us, everyone putting up prayers for Madeline, it all means more than words can say to us. Madeline is the love of our lives, and to know so many people are supporting us and supporting her has it's own way of changing our views on life. We are thankful for all the food, we are thankful for all the little and big things that people do for us. We are thankful for all the generous donations that we have received, and for all the visitors that have come from far and wide to be here with us. I hope we have good news tomorrow, we will wait and see. Goodbye for now.