Friday, May 21, 2010

Not in the mood ...

I'm really not in the mood to post today, but instead of making a bunch of phone calls and sending off emails, I would rather cover everything in one post. Most of our family and friends read this blog anyway so it's the cheater's way of informing the masses. I'm exhausted from taking care of a sick baby all week, and I myself am recovering from a doozy of a cold so this will have to do.

I've mentioned in several of my posts over the past month or two that The Chubs has not been eating well. It's gotten to the point that getting her to even eat 18oz a day is a challenge. Today, we visited a GI specialist at Children's Hospital. I won't even go into the bad memories that surfaced as I entered the building again. As many of you recall, this is where our daughter spent the first 2 weeks of her life hooked up to oxygen, breathing and feeding tubes and a million different monitors that liked to go off every few minutes.

I had to attend this appointment alone because The Hubs has been super busy at work this week. I figured it would be a fairly short appointment but we ended up being there for over 3 hours. This meant that the little muffin missed her morning nap, which under normal circumstances is bad, but considering she's still sick, it made it even worse. I won't go into all the details but they are going to order an upper GI X-Ray to make sure her small intestines look ok. They also drew blood, and collected a stool sample. She is now wearing a urine bag to collect some urine which I will need to drop off at the hospital later when there is enough in there.

They are ordering some genetic and metabolic testing to see why she isn't catching up with her growth. They also suggested physical therapy for her because they don't think her upper body strength is where it should be (not sure what this has to do with GI related issues, but it was a passing comment). Her little legs look great and are extremely strong though. No concerns there. We are also going to see an occupational therapist to have them watch a feeding and see if they can pick up any clues as to why she isn't eating well, and refusing the bottle after a couple of ounces. And instead of using polycose to add calories to my milk, they want me to switch to adding formula because it is richer in vitamins and protein. She had her blood taken last week to check for allergies, and we still have heard no word on that. In the meantime I'm not eating any dairy because it is the most common allergy.

The thing that really shook me up was the discharge forms that stated their diagnosis for this visit. It read:

  • Failure to Thrive
  • Lack of Normal Physiological Development
  • Lack of Coordination
When we were at Children's the first time around we were constantly given the scariest scenarios. I feel like we're back in this same place again. I know they need to cover their bases, but sometimes it's just too much. This has been the longest, most exhausting week and it is definitely ending on a low note. My head is spinning and after watching my sick and tired daughter get poked and prodded all morning long, and trying to console her, I need to mentally check out for a little bit. I will be back to post updates as we receive them. Thank you for your prayers.


  1. Just emailed you, but wanted to say you're on the top of my prayer list. Hang in there, Ellie. Love you!

  2. Oh my! So sorry you had such a long day. I know all to well how those days go. Keep your chin up. I will be thinking of you and the little one.

  3. Oh Ellie! I am so sorry to hear your little girl is having such difficulty eating and being sick this week. You can feel the heaviness in your words and my heart goes out to you. It just seems like one overwhelming thing after another with the hospital visit. I will be praying for your baby girl and hope that you find some answers soon. (HUGS)