Bits from the last few days

We are back at home and trying to recover from the whirlwind of last week. There are SO many things I need to get caught up on and document - Elena's birthday, Clinic Visits, Elena Day and the Light the Night Walk, etc. Those posts will be coming soon (hopefully) - be on the lookout. For now, I thought I'd just throw up a little update.

We were reluctantly released from the hospital on Saturday afternoon. We would have had to stay longer, but we made sure to tell every nurse and doctor and tech we saw about our big plans for Saturday and either out of pity or annoyance, the Hospitalist agreed to let us go, with strict directions to follow and instructions to report any problems, concerns, etc right away.

Lily in her hospital digs.

She doesn't look too sad, right? That's because this was after she had pulled out her THIRD feeding tube. (Naughty girl...) And she'd somehow also gotten the stars to align in her favor so that her IV had to be removed as well. That little hospital gown is about the cutest thing ever, no?

As for how she is doing? Well, there is no short answer to that question. I could give you a bunch of big names for things that we know are wrong and such. But, instead, I'll just say this:

Physically, she looks and acts great. If she wasn't so small (and you didn't see her diapers), you'd think she was totally normal. As for the rest, we don't know yet. She is taking her formula well now, so that's good. Now, we are just waiting to see if she grows. A lot of test results for some nasty diseases and disorders came back negative while we were in the hospital - which we are so thankful for. We have confirmed that she has some sort of allergy to food proteins (hence the no more nursing and switching to a special formula) and also that she has reflux (silent reflux seen from the scope of her esophagus - we've never seen symptoms of this). We are still waiting on a few more tests and other than that, we are just waiting to see if she gains weight and stops having her other symptoms. If she gains weight, then we can assume we have found the problem. If she doesn't gain weight, then we haven't found the problem and we'll have to do a more complete colonoscopy and other tests and try and find out what's going on.

So, all this leads me to her special, new formula - Elecare. We are very grateful that it is available to Lily - it is lifesaving for her. It is all she is allowed to eat right now. Let me tell you a little more about it: Basically, it's like another baby drank some really souped up formula and then partially digested it, threw it all back up, and then they dried it and ground it back up into fine powder. :) It's hypo-allergenic and made from very basic, broken down things - no whole proteins. That way it can be mostly passively digested instead of actively digested and hopefully help her grow. And it is one of the stinkiest things you've ever smelled. Wayyyy worse than normal formula. And it is impossible to find - it is a prescription only formula. We can't find any pharmacies within a couple of hours of us that carry it. And it is freaking expensive.

I bet you were wondering what $400 of formula looks like. You were? Well, let me show you:

And to put that in perspective:

These aren't large cans, like you normally get at the store. These are little cans. Smaller than a regular size drinking glass from our cupboard.

And that's not even a month's supply. To feed our EIGHT MONTH OLD, 11 lb DAUGHTER it will cost almost $700 a month! You could feed several families our size for that amount. Unreal, huh? I just have to rant about that for a minute because I just picked up the formula and it is absolutely unbelievable to me. Thankfully, we have a resource for at least $500 of the formula. We'll see how the rest works out. Grow baby, grow!

Here's Lily looking awfully cute today. I think sometimes her head is just too heavy for her little body. :)

Lastly, I just want to tell you about a miracle we experienced in the hospital. I am absolutely positive that it was a miracle - divine intervention.

The doctors had Lily stop nursing cold turkey (ouch. OUCH!). The first day was really, really rough. She wouldn't take the formula - we tried bottles, sippy cups, a regular cup, a syringe, etc - nothing worked. Hence the feeding tube. It was just what I feared. Lily has always LOVED nursing - more than your average baby. I was really worried about her ever taking a bottle really successfully (obviously she'd get hungry and take a little, but I was worried about her taking large amounts consistently). And I was also worried about her emotionally. Nursing made her happy in any circumstance, calmed her down, helped her get to sleep, comforted her when she was sad, scared, etc. With no real success the first night, we put her down to sleep, grumpy from not being able to nurse and exhausted and traumatized from the battle of inserting the feeding tube and IV. She woke up during the night (another thing I was dreading - I was sure we had a long night ahead of us with no nursing to put her back to sleep) and she took the bottle. She didn't cry or even root around and try to nurse. Then the next morning, the same thing happened. And a few hours later, the same thing again. And it repeated itself all through the week and weekend. She even started to reach out for the bottle when she saw it and then pant happily and snatch it up as soon as it got close to her. It was like nursing had never existed to her. Not once since that first day has she ever tried to nurse, root around, pull at my shirt, get frustrated and cry, etc. She has been so happy the last few days since she started taking the bottle. It has truly been a miracle. Our nurse and doctors all commented about how surprised they were, too, after seeing her on Wednesday. I know it was a blessing from the Lord and the fulfillment of a priesthood blessing that Lily had the night before she was admitted. The Lord is aware of us and answers our prayers!

Thanks for your prayers. Hopefully we find our answers soon.

More posts coming.