Thursday, December 15, 2011


Well, true to what our daughters seem to be, Shilo has kept things interesting for us. Last Thursday we saw her cardiologist and everything looked great. She was falling back on feedings a little, but we were persistent and increased her calories for her formula again.

The weekend was full of a sleepy baby who was VERY hard to feed. We went into Monday deciding we were ready for an ng tube so we could feed her what we could and ng the rest. She was not taking in enough. I e-mailed our doctor, but didn't hear anything back. We already had an appointment scheduled for Thursday so decided to wait it out as long as she was taking in enough to not dehydrate.
Wednesday morning, Jason changed her diaper at 2. I checked it at 8 and it was dry. I gave her lasix (which is a diuretic so usually she pees within the hour). Two + hours later still no pee.
I called our doctor and cardiologist. We saw a doctor (ours is out on Wednesdays) and the short of it is we ended up at the e.r. at Riley for what we thought was going to be an ng tube and a couple of days of training.
When we got here her temp was 90.3. No, you didn't read that wrong, nor did I type it wrong. It was quite a whirlwind of activity from that time forward with doctors and nurses poking and warming, asking questions, and examining.
Her heart still looked great, her lungs were a little cloudy. So there was talk of a possible infection being the cause of sleepiness, leading to not eating, leading to dehydration. But we still had to wait on blood work for a few things.
So despite the fact I was awaken this morning by the doctor coming in to tell me this, it still feels like 'good news' in the grand scheme of things. It appears she has hypothyroidism. This is super common in Ds and would explain all the symptoms from being extra sleepy to a low body temperature. And, it can be fixed with medicine and monitoring of blood. We can SO handle that with no problem at all.
We are in the PICU right now and will likely be moved to the floor today as she has been stable all night. I am a wee bit tired. We would love your prayers for things here to turn around quickly so we can get back home again. Abigail is in the nutcracker ballet on Saturday and Mama would love to be able to see her in it. So would her sister. ;)


  1. What a scary situation! We're definitely praying.

  2. Lots of love and prayers for baby Shilo.

  3. Oh my! That temp freaked me out. Sending you lots of "get home soon" thoughts.