Delaney Update: 5/2

The ups and downs of taking care of anyone healing from massive trauma can be a very slow process. Filled with gains and losses. I was able to share some small but very happy gains yesterday. Today on the other side of the coin we are closely monitoring Delaney's fluid intake. She went an extended period of time without a wet diaper and this worried us a great deal.

She has been appearing very healthy outwardly, clearly looks 100% better than she did at the hospital. However, being new to infant care, let alone with the maladies she has faced we have to be extra careful to monitor many specific vitals, but hyrdration is a serious concern that we need to be extra careful with as we try to increase her amount of breastmilk per feed.

Since she was at Children's Hospital and on IV fluids for so long we have had to try to increase her daily intake a little bit at a time, as her stomach completely heals from the Necrotizing Entrocolotis (NEC). This is treated with antibiotics and IV nutrition. She wasn't allowed to feed normally for 10 days. As a result, her stomach shrunk and since that time her body has had to learn how to digest all over again.

As we have tried to increase her feeds, Delaney has been able to tolerate these increases pretty well. We recently hit a snag and couldn't get her above 45ml per feed without her spitting up a fair amount. A baby spitting up isn't usually a big deal but Delaney can't cough, swallow, or clear her throat. So there is always the danger of aspirating fluids. A delicate balance of increasing feeds and not over doing it.

Last night as we examined her we noticed that her fontanelle (soft spot) and discovered that it was slightly depressed (a sign of dehydration in infants). We called the on-call hospice nurse and got some advice on how to handle it. Based on his recommendations we added some water in between feedings through her feeding tube and reduced the amount of each feed and increased the frequency from every three hours to every two.

Last night, I was a wreck. I couldn't sleep until I knew we had a wet diaper. 1:30am turned to 2:30am, still nothing. Each hour I checked and have small amounts of water in between regular feedings. As 3:30am rolled around I just couldn't stay awake any longer, but still no wet diaper.

Much to my relief as I woke up, Lindsay found the jackpot. I was never happier to hear about a wet diaper in my life. Our efforts finally paid off and she had several wet diapers today, and we are back on track.

I have written before about living on the moment, let me tell you when we are monitoring feedings, diapers, breathing...I'm certainly not thinking about the playoff hockey, politics, or funding education. It's just the three of us coordinating our attacks on all of these fronts. It's not easy, but we will do anything for our daughter.

...but enough about us, how about you? I would like to take this opportunity to thank you all for such generosity. Words cannot fully express our gratitude for the outpouring of support financially, emotionally, and spiritually. This little girl has touched so many in such a short period of time. She is so tiny, yet so powerful. I can't help but think of "The Lord of the Rings" epic story, with Frodo taking on a task that was so much bigger than himself. He couldn't do it alone, and in our fight neither can we. Thank you so much, we love you all.

God Bless,
B & L & d