Milk On a Stick

Lilly was excited today about a new snack idea my husband had for her. I dubbed it "Milk on a Stick." (I was thinking of "steak on a stake" that I've gotten at Renaissance Festivals.) My husband dipped the sponge at the end of the stick into Lilly's milk and then I let her suck on the sponge. She enjoyed this for about an hour this morning.

Milk through the feeding tube keeps her tummy from being hungry but we've noticed that she still really wants to suck on something, though she'll have nothing to do with a pacifier. (I guess she knows her mama is really anti-pacifier, but I was willing to make an acception for Lilly!) We figure her mouth probably is pretty dry too. So milk on a stick it is!

The dr. said today that they'll be watching Lilly closely to see if she's got a healthy nutritional growth pattern going. They also are continuing to slowly wean her off the bit of oxygen she's getting in the tube under her nose. Once those objectives are met then she'll be released! (And we're all thinking that will be later this week as the dr's are so pleased with her progress!!)

The dr's are developing a plan for Lilly to send home with us. It looks like she'll remain on the feeding tube for awhile. Lilly's pediatrician home in N.C. will monitor Lilly's growth and her cardiologist will monitor her heart and the pulmonary artery band on it. Once Lilly is deemed big enough, or the artery band gets too tight, then we'll bring her back to Wolfson's for the open heart surgery.

We were blessed today to have a short visit from the C. family that goes to the same church back home, and Mr. C. works at the same place as my husband. Before they left, Mr. C. led us all in a wonderful prayer for Lilly. Some of the things he prayed for Lilly were so fantastic to think about. The scripture that comes to mind when I think about the prayer is from Mark 10:27: "Jesus looked at them [the disciples] and said 'With men this is impossible, but not with God; all things are possible with God.'" Men can do some pretty amazing things (like Lilly's heart procedure!) but God can do still more!

The Lily of the Valley ...

There's very little to report today because Lilly had such a good day! This morning her vitals and chest x-ray looked good so she was able to "step down" which meant that she could be moved out of intensive care.

So that's what we did this afternoon. Road trip to the 6th floor! Lilly got settled in after a bit and rested in her bed. (See second picture) Then I held her and talked to her and sang to her. She watched me with her big eyes. It was hard to leave her tonight.

Lilly's nurse this afternoon said that after checking her he had the hymn "Lily of the Valley" stuck in his head and it was driving him crazy because he couldn't remember all the verses. So he finally googled it and felt better.

My husband said he and Lilly worked on a little Greek this morning in reading about our Lord: "I am the Alpha and Omega, the beginning and the End, who is and was and is to come, the Almighty." Revelation 1:8. Lilly indicated her favorite verse in this chapter was verse 17 which says "Do not be afraid . . . ."

I think that verse is a good one for all of us to remember!

Happy birthday Lilly!

Lilly is 3 months old today! Praise the Lord! Keep on defying those odds my little Lilly!

What big eyes you have!

Today's pictures make me smile - Lilly's eyes are so wide and clear.

She had a bath this morning - you can see her mohawk is extra fluffy and rather unruly. A nurse replaced the line coming out of her head today. When you look at Lilly from that shaved side of her head - it makes it look like her mohawk is a fashion statement. :) I can't wait until her hair grows long enough for me to do puppy tails on her. The nurse told me that she has a friend that had a T-18 baby that lived about 2 months. :(

The doctor commented today that Lilly has "overall really done well" - both pre-surgery and post-surgery. :)

Lilly got her heel pricked for blood once an hour for a good portion of today. They were testing her sugar levels which were showing a bit low now that some of the feeds were removed. She's also been getting a chest x-ray each morning. She's still showing some fluid around the lungs though the doctors are pretty sure that that fluid is leftover from surgery time. She's still on the Lasix so Lord willing that will clear it up quickly. Finally they're continuing to lower the oxygen amount that's going into her nose.

We're still waiting for her to be discharged from ICU.

Another splendid afternoon of holding Lilly. She's just so content in our arms and we are too. I talked to Lilly about God today and shared a scripture where our Lord describes himself to Moses: "The LORD, the LORD, the compassionate and gracious God, slow to anger, abounding in love and faithfulness, maintaining love to thousands, and forgiving wickedness, rebellion and sin." Exodus 34:6-7. I found it very humorous to learn today that the Hebrew word for "slow to anger" means "long nosed." God is long nosed? Turns out that there used to be a belief that the length of your nose had a lot to do with how fast you'd lose your temper!

On a sobering note, while at the hospital yesterday, I noticed a child in a room were there was a flurry of activity with doctors and nurses all day. By the time I left the hospital the room next to this child had been opened up and it was filling up with a lot of tense looking people, who were there in relation to that sick child. My husband told me that about 11:30 last night he suddenly began to hear heartbroken wailing from many people. This morning those rooms were empty. It makes me tear up just to type this and to praise God again for sparing my little baby girl as that scene could have been us.

"Now this is the confidence that we have in Him, that if we ask anything according to His will, He hears us." I John 5:14

THANK YOU THANK YOU THANK YOU everyone for praying for our Lilly! God hears His people and is answering daily with her life!

It just keeps gettin' better

If you read my blog early Saturday morning, you may not have seen a very important updated post: Lilly came off the ventilator without a problem! (Another answered prayer, praise God!) She now has some oxygen blowing in her nose by a tube under it, just to continue to help her a little while her chest recovers. The dr. said she was breathing with "normal effort." Also that her cardiovascular system was normal.

They took artery lines out of Lilly's wrist and neck today. We didn't realize until today that she had a couple stitches in her neck (around the artery line) and the top of her chest. The neck stitches came out today. Several medications were either cut back on or stopped.

At rounds today, the dr. ended his report on Lilly by saying "very good - it's looking good." :)

Lilly was fussy much of the morning and early afternoon. We could tell she was hungry! About 4:00 they put a new feeding tube in through her nose and started her back on breastmilk. (No formula added in yet.) She finally became quite content.

Another huge highlight of the day was when we got to hold Lilly! She finally had enough stuff off her that we could carefully hold her. (Still a lot of tubes and lines left to be careful not to bump or pull.) But it was so wonderful. (I don't think I'll ever again take for granted what a blessing it is to be able to hold my baby whenever I want to - or the baby wants me to.) With milk in her tummy and then in my arms, Lilly's heart rate dropped to about the lowest we've ever seen it go. (That is a GOOD thing! It meant she was very calm and relaxed.)

We're hoping and praying that Lilly will be moved out of the intensive care unit soon, so her brother and sister can come see her (and my husband will have a slightly less uncomfortable place to sleep). Our children came to the hospital yesterday and went on an adventure walk with my husband but were frustrated they couldn't come back to Lilly's room to see her. Apparently when they first arrived my son was telling anyone that would listen "LILLY!!"

I can't wait to find out what tomorrow holds!

"Because of the LORD's great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness." Lamentations 3:22-23

Off the ventilator!

Just had to share before I leave for the hospital this morning - Lilly is off the ventilator! Praise God! My husband called to tell me they had her completely off it by midnight last night. Another prayer answered! :)

Recovery

Weight check = impossible to tell - Lilly has too many things on her and equipment on her bed to be weighed.

Today was wonderfully "uneventful" from the doctor's perspective. Lilly didn't set off the "red alert" alarm at all. She seemed comfortable and content today as she busily chewed the breathing tube in her mouth. My husband and I both found that it was better for us not to talk to her or touch her very much because she would respond by looking at us and starting to wiggle around a lot. (We want her to stay pretty still right now.) But how great that she's not so doped up she doesn't recognize us.

They took the chest tube out today. (It was for drainage.) I cheered as that means one less thing in her and one step closer to when I can hold her again.

Because it was discovered yesterday that Lilly has no thymus, she'll be on an antibiotic twice a day - three days a week, for at least several months. It will be a tiny amount at a time. I want to do my own research too to find more ways to build up her immune system. I'll start by adding in some colostrum to her bottles. Plus I'm taking a product called "Pure Immunity" so she gets that in the breastmilk. But I need to research this further.

At 2:30 this afternoon they turned down the ventilator for the 3rd time thus far. The setting they went to meant for every 30 breaths, 20 were on her own. Yay! Miss Fiesty was responding so well that they said they were going to try and take her completely off the ventilator tonight sometime. (They had not tried when I left the hospital this evening.)

My husband and I were talking about Lilly being a trisomy 18 baby. We found that we have both, in the last few days, have really reconciled with Lilly having T-18. It's interesting this came about for us both at about the same time - and we hadn't been talking about it at all. Anyway, though of course we both would give anything for Lilly to be "normal", we both are just so deeply in love with her just how she is, that we have found we can truly - for the first time - thank God for her T-18.

". . . No eye has seen, no ear has heard, no mind has conceived what God has prepared for those who love him - " 1 Corinthians 2:9