The hospital stay in photos

Now that we're HOME!!! I was able to load up my camera pictures from the hospital.

Fighter pilot Lilly:



Goodbye fighter pilot, hello cannula:

Ahhhh ... finally able to achieve "favorite position":

Sneaky Lilly:

Homework - drinking milk by dropper:

Snuggling with daddy:

Hooray! Time to go home:

Lilly's newest accessory - an oxygen tank 30 times her size:

Lilly snoozing with the "fun size" oxygen tank (black bag on table):

Freeedom!!!!

William Wallaces's battle cry is sounding over and over in my mind. :) That means YES! we are going home. We have discharge instructions and a portable oxygen tank. (Large tanks will be delivered to the house later today.) Now we're jusy eagerly awaiting our ride! I'm so excited I can hardly sit still. Lilly is so excited she fell asleep in my lap.

A million dollar smile

Last night Lilly smiled! Several times! I was so excited as this is the first time she's smiled in over a week. Usually it makes her smile when we gently touch our noses to hers. But with all the tubes in her nose, I don't think that's comfortable for her right now. But last night she smiled in response to me giving her tiny kisses on her cheek. It certainly did my heart good to see that.

"A cheerful heart is good medicine . . . ." - Proverbs 17:22

She has also started doing something new. She did it Saturday night, but I wasn't sure it wasn't just a coincidence. But she did it again last night. And that is this - when I rub her hand with my finger, she opens 3 of her fingers and grabs and holds onto my finger. She does it easily with her left hand. Not too much with her right.

It's fun when a normal baby first does things like this, but with Lilly, it is a serious time to rejoice since we don't know what is going on in her brain. So praise the Lord! :)



It's 9:30 a.m. and I'm waiting for a caseworker to come in to help set up Lilly with the home medical supply place. I'm anxious to get her home oxygen tanks and paraphernalia so that we can GO HOME!!

Waiting waiting waiting. And waiting.

The doctors have decided that Lilly may leave. We will take oxygen with us and she will be hooked up to it for naps and nighttime. However, being that it is Sunday, the medical supply places are closed. Soooooo ... Lilly and I will be here another day and night. Sigh ...

They will take her back off the oxygen once she wakes up this morning and just put it on during sleep, so they can monitor what it will be like at home. It's 10:20 a.m. as I type this and Lilly is STILL sleeping! She was up until midnight last night though. I'll be glad when she gets through this late night partying stage.

An old Nestle Quik commercial popped into my head this morning. It's from way back when the Nestle Quik rabbit would say (or maybe it was the kids in the ad that said this) that "patience is a virtue." (Ha! Can't imagine any "virtues" being presented in any modern ads!) Anyway, Lilly and I will continue working on that virtue of patience today.

"Now may the Lord direct your hearts into the love of God and into the patience of Christ." - 2 Thessalonians 3:5

OK I better get a mental to-do list in my head for today so that I don't get depressed. Reading mixed with exercising mixed with Bible word searches and over course holding Lilly as much as possible . . . I'm feeling more upbeat already. (Thank you so much K.S. for dropping off the word search book - I've been enjoying it!)

Back on oxygen

Lilly is back on oxygen. It's only the smallest amount. But every time she gets into a deep sleep, she sets the alarms off. For a minute or two at a time her breathing is just too shallow for the nurses to feel comfortable. The nurse did say that since it is only a tiny amount, maybe Lilly could just be released with the oxygen. The plot thickens ...

A setback

Lilly had a dip in her breathing early this afternoon. It was brief and did not require oxygen. But it was enough that the doctor felt hesitant about releasing her today. Please pray that Lilly will maintain good breathing levels. If she does, then the doctor said she'd be released first thing tomorrow.

OK that was disappointing news. (I actually felt like I'd been punched in the gut!) But I certainly don't want to take Lilly home if it's not safe. My husband is going to go home though, and will pick up our other children on the way. Yay! Then, Lord willing, tomorrow they will come pick up Lilly and I. Can't wait to see all those smiling faces! (Thank you mom for taking care of the children for a week. It was nice not having to worry about them.)

Release !!!???

Weight check = 8.3 lbs. (slight drop but we expected it)

On the white board in Lilly's room, the nurse wrote the plan for today as:

- keep oxygen off
- feed
- plan going home party

Yay! We are rejoicing. The doctor is monitoring Lilly's breathing (she's off the oxygen) and said if it stays good that we could plan to go home today. So far Lilly is doing great this morning. She's not a wet noodle anymore - she's moving around well and just being normal Lilly. One week ago today it didn't look like she was going to make it and yet here she is. The little Trisomy 18 baby that just "keeps on ticking." Thank you God.

Years ago I visited San Francisco. My favorite part was a tour of Alcatraz. I just keep thinking "escape from Alcatraz!" We're breaking out today!! Seriously though, being in this room for a week did make me reflect a lot on what it must be like to be a prisoner. It's amazing how the human body can adjust to things though. On Tuesday I thought I'd jump out of my skin. But by yesterday, I had my daily routine so down that I was almost dismayed when I realized it was dinnertime. I still had things I wanted to do!

Yesterday was the day that Dr. H said that if Lilly came off the oxygen and did well then we should be going home Saturday (today). Even though I knew this was not a guarantee I was filled with so much HOPE. That hope completely changed how I felt. Having an idea of when something stressful is coming to an end, and having that hope, is transforming. I'm sure every prisoner could tell you when their upcoming release date is. This reflection also led me to think about how I used to feel, when I had no hope in Christ, and that life had no point. You live it and then all you had coming was death. Where is the hope in that? There is none. It's empty.

"Martha said to Him, 'I know that he [her dead brother Lazarus] will rise again in the resurrection at the last day.' Jesus said to her, 'I am the resurrection and the life. He who believes in Me, though he may die, he shall live.'" - John 11:24-25

When a couple of the nurses here found out I inserted a new NG tube into Lilly each week, they asked if I was interested in becoming a nurse. NO! I realize all the more that that is not my bent. It has been really interesting interacting with the different nurses here and observing their personalities. Some come in and immediately take charge and want to change things. Others follow the program. Some are quite personable. All have done an excellent job taking care of Lilly. I enjoyed my conversations with one of the night nurses - she is into cloth diapering and making homemade baby food too. Then we had a really kind day nurse with whom I enjoyed discussing children with. She even quietly confided that she believed in the power of prayer. It had saved her mama from dying.

I do feel like I am leaving here better knowing how to take care of Lilly. Though I have two other children, I often feel like with Lilly I'm "starting from scratch." One nurse here used to work at another hospital and told me that there was a little boy with Trisomy 18 who was in and out a couple times a year with something or another. That seems to be the case with a lot of the Trisomy 18 children who's blogs I look at. And I suppose it may be that way with Lilly.

"These things I have spoken to you, that in Me you may have peace. In the world you will have tribulation; but be of good cheer, I have overcome the world." - John 16:33