Monday, May 2, 2011

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


  1. I am so sorry you have been dealing with so many ups & downs. I wish we could be there physically more often, but I am grateful for the internet to keep us connected on some level. I do understand the correlation to LOTR and read the following excerpt through tears:
    "I wish it need not have happened in my time," said Frodo.
    "So do I," said Gandalf, "and so do all who live to see such times. But that is not for them to decide. All we have to decide is what to do with the time that is given us."
    The Lord of the Rings
    Gandalf and Frodo Baggins.
    This situation sucks, it just does!! But you are embracing what you have... Delaney is a blessed baby to have such determined, loving parents by her side.

  2. I am so very sorry to hear what you've all been going through. I can't begin to imagine how hard this is for you both as parents. My heart goes out to you and, of course, to Delaney. She's a beautiful, beautiful little girl that clearly shares your strength and spirit.

    Blair Centers

  3. Brian, our entire family is thinking and praying for Delaney. I can't offer any words of wisdom beyond holding on to the love you and your wife share for each other and Delaney. All our best.

  4. I am so incredibly touched by your family's story. There is nothing more important than your sweet, sweet, baby girl. I'm sure by now, your refrigerator is full of meals and treats. While I'm sure a gift of money would also be appreciated, I would like to offer you both an hour or two out. I am an RN...I work in surgical clinical trials at Beaumont Hospital. My name is Karen Sherer. My daughter Maddie is a sophomore at Seaholm. I would be so happy to help even if you want to take an afternoon nap and not have to sleep with one ear tuned to your baby's sounds. Please consider. I can be reached: You are all in my family's thoughts and prayers.

  5. Your family is in our thoughts and prayers, you have a beautiful daughter and we pray for her.
    All our love,
    The Gwizdz Family

  6. Brian,
    Thank you for sharing! Your BCS, Seaholm and Redeemer family has held your family in our prayers. Through your words shared here in your blog we now know exactly for what to petition God ... we will pray boldly! The Mee Family

  7. Keeping your daughter in my prayers. -The Tabbert Family


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