Happy Columbus Day!

Weight check = 5 lbs. 8.5 ozs. Yay!! Keep on gaining Lilly!! :)

On the Lord's Day

As I dressed Lilly for worship service today I thought once again, that there is a real need for "super-super-slim sizes." I wanted to put a newborn size baby dress that I once wore on her, but even though the length was good, it was just too wide. So she's sticking with her "old faithful" dress. A preemie size long smocked dress. We call it her "angel dress."

Though not as often as I used to, I still sometimes wonder why God created Lilly to have trisomy 18. This scripture I read today reminded me why:

"Now as Jesus passed by, He saw a man who was blind from birth. And His disciples asked Him, saying, “Rabbi, who sinned, this man or his parents, that he was born blind?” Jesus answered, “Neither this man nor his parents sinned, but that the works of God should be revealed in him. I must work the works of Him who sent Me while it is day; the night is coming when no one can work. As long as I am in the world, I am the light of the world."
John 9:1-5

We know God answers "the big prayers" - He has been so faithful answering so many of our prayers for Lilly. Last night I was reminded that God cares about the "little things" in our lives too and blesses us in unexpected ways. Yesterday afternoon I was putting things away in our pantry and it crossed my mind that a small shelf to hang on the wall would be useful. Then last night as we went for a walk, we found that someone had thrown out a bunch of things by the road. Amazingly I found a small shelf like I had in mind in a box. And not only that - I found a wonderful apothecary jar just like I've wanted for a long time, but never wanted to spend the money on. Now these are just "little things" in the whole scheme of things, but I do believe they were "just because" blessings from God. He is so good and faithful in ALL things! :)

Plugged in ...

Today's lesson was "how do I do things holding Lilly when she's plugged into the milk pump and the milk pump is plugged into the wall?" I found myself stopping a number of times today thinking "Ohhh ... that won't work." Even just taking Lilly from her bouncy seat in the kitchen to go get her diaper changed in another room takes some planning ahead. Downstairs I can carry Lilly and push around her stand holding the milk bag and pump. (After first disconnecting it from the electrical outlet! Thankfully the pump stays charged up for a number of hours. My husband and I have to tag team to get Lilly and all her stuff upstairs at the same time.

Lilly is a normal baby in that she often decides to get fussy when I need to make dinner. So this evening when it happened I just rolled her "milk stand" out to the deck and had my husband hold her while he also kept an eye on our son.

Of course none of this is really that important in the whole scheme of things. But has got me thinking - one more time - that I'll never again take for granted again being able to quickly and easily carry my baby from room to room or up and down stairs.

Safely home

We made it safey home to N.C. today. I realized one big plus to the NG tube feeding is that we never had to stop to feed Lilly. I just hung up her little backpack with the pump and milk and refilled as needed!

The journey back went smoothly enough. It feels good to be home but wow - is there a lot of unpacking to do. Seems we came home with about six times the amount of stuff we left with!

We are greatful to the Lord for His travel mercies and especially for letting us bring a healthier Lilly back home with us!

Freedom!!!!

Lilly (and my husband!) were discharged from the hospital this afternoon. Yay! I drove them back to my aunt's house and after our son woke from his nap, we all went for a walk. How glorious it was to get out during the day and walk!

Lilly had a busy day getting ready to leave the hospital. The pict line was removed from her head. (We got to take the bandage you see in the pictures off once we left the hospital.) That oxygen tube under her nose was removed and she also got a new NG tube for feeding. (I put it in her nose myself. She will continue on the feeding tube for awhile, with formula added into the breast millk. We really want her to gain some weight.
Lilly is on a several medications. I think I have these straight:

- Vasotec - for her blood pressure

- Lasix - keep fluid around her lungs down

- Zantac - make her tummy feel better

- Aldactone - help keep her potassium levels up

- Bactrim - an antibiotic (since she has no thymus)

She takes the first 3 twice a day, the 4th once a day, and the last 3x three days a week.

She has an appointment with her pediatrician back home next Friday. We need to make an appointment with her cardiologist for the following week. She'll probably alternate seeing those doctors each week for awhile. The pediatrician will monitor nourishment and weight gain and of course the cardiologist her heart.

We will drive home to N.C. tomorrow! We can't wait to be back in our own home, all together again. :) Though we could ask for a better place to stay than my aunt's house here.

Lilly (and my husband) were in the hospital for a total of 3 weeks and 1 day. We were really impressed with the care she received at Wolfson's. There were a couple of nurses in particular that were just so caring and went above and beyond our expectations. It was almost sad to leave the hospital! But we'll be headed back in a few months for the open heart surgery.

Put on your travelin' shoes

Lilly got a visit today from her big sister. Unfortunately she still can't see her brother because the hospital's flu policy is now in effect which limits some visitors. Lilly's sister stayed with me the whole day at the hospital. When we left she said she felt sad because we had to leave her Dad and Lilly. I told her I know how she felt - I feel torn no matter where I am because my whole family's not together.

But ... that may change tomorrow! Yup - Lilly was instructed to "prepare her traveling shoes!" This afternoon preparations were started so that she (and my husband!) could be released TOMORROW! :) I'm afraid to get my hopes set on that though.

Lilly was off all oxygen all afternoon, praise God. But tonight my husband told me over the phone that Lilly had gotten agitated and they put her back on a little oxygen. So I don't know what will happen.

But I do know this: I "Give thanks to the LORD, for He is good; His love endures forever." Psalm 118:1

(NOTE: I have another new post - non-hospital related - below this one)

Lessons from Lilly

Recently C, a dear friend of mine, posted "Lessons from Lilly" on her blog. (She also posted the link to where she got the pattern for the cute shirt she made Lilly.) You can read what C wrote at: http://inspiration4theday.blogspot.com/2010/09/lessons-from-lilly.html

As I reflected on what C said were things that Lilly inspired her to do better, I realized that Lilly has taught ME so many lessons and inspired me to do so much more and to do things better. I'd like to take the time to make a list sometime soon.

I am continually amazed at what this wee little girl has done in her 3 short months of life so far. It's nothing she's been able to do physically - she still isn't capable of smiling. But through God, just her existence has inspired people to love their families better, to be more grateful for everything, to strengthen their relationship with God, to repair their relationships with other people, etc.

I am definitely a proud mama! And grateful to God for giving me increasing strength to deal with all that goes along with loving Lilly.

Lilly's verse today is from Psalm 119:88 ". . . Preserve my life according to your love, . . ."