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The story of our precious little girl's 17 months of life with Trisomy 18 (July 4, 2010 - December 15, 2011) and of us, re-learning to live "after Lilly."
"I will praise you for I am fearfully and wonderfully made ...." Psalm 139:14

Sunday, October 31, 2010

Happy Reformation Day!

Weight check = 6 lbs. 4.5 oz.

Here's Lilly reading the Sunday comics today. :)

My oldest daughter's favorite person in history is Martin Luther. So she was extra excited that today is Reformation Day. (Martin Luther nailed the 95 Theses to the door of the church in Wittenberg, Germany in 1517.)

We wanted to take a moment to thank everyone for your many prayers and your support. God has and is answering!

"The LORD bless you and keep you; The LORD make His face shine upon you, And be gracious to you; The LORD lift up His countenance upon you, And give you peace.” Numbers 6:24-26

Thursday, October 28, 2010

Worth every tear ...

Today's picture is of Lilly during our homeschool nature study. It was interesting coordinating tree identification and leaf and bark rubbings with my oldest daughter, while taking Lilly and all her paraphernalia (pump, pole, and milk bag) all over the yard.

Today I read an article by former Pennsylvania Senator Rick Santorum, who's youngest daughter, Bella, has trisomy 18. The article, written May of this year, was celebrating Bella turning 2. (Yay!) As I read the article, I identified with so much of what Mr. Santorum said. It seems like so many of us that give birth to a trisomy 18 baby have the same sorrows, battles, and incredible joy. You can read the article, entitled "The Elephant in the Room: Two years worth every tear," at:

Wednesday, October 27, 2010

Drumroll please ...

Weight check = 6 lbs. !!!!!!!!!!!!!!!!!!

Yes folks it's amazing, it's incredible, Lilly finally weighs 6 pounds!!

"Oh, give thanks to the LORD, for He is good! For His mercy endures forever." Psalm 107:1

Lilly had an echocardiogram today and met with her cardiologist. She checked out great! Her heart looked good, the cardiologist said the pulmonary artery band fit perfectly (and he complimented the surgeon's job on it), and there was no fluid buildup around the heart or lungs.

He reduced Lilly's Lasix medication to one dosage a day and said we could stop the Aldactone. (That means she'll now be on "only" 4 medications.)

Out of curiosity I asked was the size of Lilly's VSD (hole in her heart) was. He said it looked like it was at least 9 mm. (That is considered very large.)

Lilly goes back for a checkup in one month.

On a completely different note, in this last picture, Lilly is reminding everyone to get out and vote! (She's wearing her "I voted early" sticker.)

Tuesday, October 26, 2010

It's a love-hate relationship

When my oldest daughter, T., was about 3, she would tell people she had a "love-hate" relationship with Bob the Builder. (Yes she has always been very expressive.) I remembered her expression today after having another struggle with the NG feeding tube. And I understand what she means.

I LOVE the NG tube because it is keeping my baby nourished, gaining weight, and alive! I HATE it because inserting it and all the things that go with it can be really time consuming and stressful.

Today when I took T. to piano lesson, I left Lilly's pump and milk at home. Instead I took along a bottle so we could practice bottle feeding while T. had her lesson. Lilly did OK - she drank a few milliliters. Then when we got home, I hooked her back up to the milk pump, then went to go do something.

T. suddenly yelled that there was milk coming out Lilly's nose. I stopped the pump and checked the tube. It had about come all the way out! I was shocked as no tube has ever budged on Lilly before, but stayed taped in place. I felt terrible because I hadn't checked it first. (Learned that lesson! I'll be checking a lot more frequently now.)

Ok fine. I trashed the tube and got out a new one. But Lilly began crying and gagging everytime I started putting it in. At one point I thought it went in smoothly but it came out her mouth! Soon I felt like crying right along with her. I couldn't figure out why it wasn't working right. I've done this before without problems! Finally after a really upset prayer to God, the tube went in smoothly. So smoothly in fact, that Lilly hardly whimpered, even when it went through the "gag zone" (her throat). Whew ... thank you God ...

Tomorrow afternoon Lilly has an appointment with her cardiologist. I assume he'll have an echocardiogram done on her, or at least an x-ray to check the pulmonary artery band in her heart.

Monday, October 25, 2010


Weight check = 5 lbs. 15.5 ozs.

Here is Lilly sporting a new knitted headband made especially for her by A., sweet young woman. Yesterday at church, I had told A. that it was hard to find headbands small enough for Lilly and so she offered to try and knit one. It turned out so soft and cute!

Lilly is in my lap right now making the cutest little talking noises. She sounds like a cat at times.

My family does not have traditional health insurance. We are part of a very affordable Christian medical needs sharing group called Samaritan Ministries. That means that when we go to the doctor for something, we pay up front (as self pay - and we get amazing discounts I might add.) Then we submit our itemized receipt(s) to Samaritan Ministries' office. Shortly after that we began receiving checks from people in the group in amounts between $100-$300. We receive enough checks to cover the amount we submitted. (We also are instructed each month on who to send our check to.) It's a fantastic system of people helping people and thankfully we're allowed to continue it, at least for now, under Obamacare. ( )

One of the nicest things about belonging to this group is that people pray for what you need. Almost every check we receive has a card or note with it with encouraging words and/or scripture. We are so grateful for those many, many prayers from other group members going up for Lilly!

Here is an example of a note received the other day. "Behold, I am the Lord. . . . Is anything too difficult for me?" - Jeremiah 32:27 The person that sent that note added: "It's not the size of the mountain but the strength of the mountain mover."

Notice in today's last picture that "sneaky Lilly" has returned - she kept kicking her sock off again today. Her brother saw her do it several times and it really made him laugh.

Sunday, October 24, 2010

Wearin' her Sunday best

Here's Lilly in the dress and bonnet she wore to church today. (It was a gift from a teacher at the school my husband works at. Love her in the bonnet! I like the more "old fashioned" dress clothes for my little ones.)

Lilly is almost over her cold, thank God. (And the rest of us are all about better too.)

"And He [Jesus] . . . healed all who were sick, that it might be fulfilled which was spoken by Isaiah he prophet, saying: 'He Himself took our infirmities And bore our sicknesses.'" Matthew 8:16-17

Saturday, October 23, 2010

Pumpkin Patch Visit

Today Lilly and her siblings visited a local pumpkin patch. Her big sister was shocked at all the bumpy pumpkins - she thought they looked like they had warts all over. Lilly's brother was thrilled to sit on the different tractors and pretend to drive. Lilly slept the whole time.
While there, I briefly wondered if Lilly would be there with us next year when we go get pumpkins. I sure hope so!
"'For I know the plans I have for you,'" declares the LORD, 'plans to prosper you and not to harm you, plans to give you hope and a future. Then you will call upon me and come and pray to me, and I will listen to you.'" Jeremiah 29:11-12

Friday, October 22, 2010

NG Tube - Take Two

Weight check = 5 lbs. 14 ozs.

Moving around the house with Lilly isn't easy. I love to carry her. But I have to roll her milk and pump along with us everywhere. (When we leave the house the pump and milk bag fit into a small backpack, which is nice. Sometimes I use that to get us around the house. It's also great for walks.) I'm not complaining - I'm so thankful for how that milk and pump are helping Lilly gain weight! But it does take extra time, thinking ahead, being extra careful, etc.

This afternoon Lilly's NG tube got a clog. I tried to loosen it by squirting a syringe full of water through it. But to not avail. The water just shot back at me. So that meant taking back out the NG tube I had wrestled with getting in yesterday. Sigh. Thank God that today the tube inserted very easily and Lilly only cried a little. I couldn't pull anything out of her stomach today and therefore couldn't do the pH test. But I wasn't too worried as that frequently happened at the hospital. I did the air puff with stethoscope test and that was fine. Whew!

For "family night" tonight we watched a couple episodes of "The Duggars: Eighteen and Counting." (A show documenting a family with 18 children, though they now have 19.) This is the first time my family has watched any and we really enjoyed them. At the hospital, I had read aloud the Duggars' book to my husband and Lilly and we found it fascinating. As I watched their beautiful family, and looked at my own children, I couldn't help but think of Psalm 127:3:

"Behold, children are a heritage of from the LORD, The fruit of the womb is a reward."

Thursday, October 21, 2010

NG Tube Stress

Weight check = 5 lbs. 13.5 ozs.

First a quick quiz: what is missing from Lilly in the picture?

If you said the NG tube then you're right! Only it's not what you think. This was "change the NG tube day" and I took the picture of Lilly in the blissful hour between insertion of the new tube into her nose.

Last week I managed to put in the new tube on the first try and all was good. I don't know what happened this week, but I had trouble. (I'm wondering if all of Lilly's congestion had anything to do with it.) On my first try she started gagging so much I pulled it back out. (She always gags some when it goes down her throat but this seemed like more than usual.) On the second try Lilly choked hard and started turning blue. That scared me so much I decided that we needed a break. So we went for a nice walk.

"Cast your burden on the LORD, And He shall sustain you; . . ." Psalm 55:22

About an hour later on the third try, the tube went in her nose but came out her mouth! Finally, on the fourth try, it seemed to go in perfectly and she fussed very little. But when I tried the pH test, I didn't get a great result. (You have to pull stomach acid out through the tube with a syringe and then squirt it on a pH paper. Then match the results against a chart. I got a "6." That's not horrible, but much lower is much better. But I was afraid to mess with the tube again. So I tried the "old" testing method - using the syringe push a puff of air into her tummy, while listening for the "whoosh" with a stethoscope. I heard it. And the tube measured the exact same as the one I had in before. My husband figured that since we did get stomach acid out then of course the tube must be in the stomach.

Thankfully Lilly seems perfectly comfortable so I think everything is fine. But I am longing for the day when the NG tube is no longer a part of our lives!

Tuesday, October 19, 2010

Assistant Professor Lilly

Weight check = 5 lbs. 13 ozs. YAY!!!!

"Those who sow in tears
Shall reap in joy." Psalm 126:5

Other good news today - baby G. (another trisomy 18 baby girl) is now off the ventilator. (She had open heart surgery a few days ago.) We love those survivor stories!

Lilly and I are continuing to play the bulb syringe game. She is still quite congested at times, and breathing labored some.

Yet inspite of her cold, she is taking her job as assistant professor quite seriously. We're finally back in the full time homeschool groove this week and Lilly has been helping me out, in between naps, with teaching spelling, geography, and science. Today we started Greek and she really liked the alphabet song. She already knew the Jesus is the "alpha" and "omega" (first and last letters of the Greek alphabet) so she was glad to fill in all the in between letters.

Sunday, October 17, 2010

Baby Wearing

I love the phrase "baby wearing." Most days I am "wearing" my baby in her ring sling for part of the day. She looks like such a little peanut! We get to be close and I get to have my hands free for some tasks. I've found that Lilly's gaining a pound has really helped her fit better in the sling.

I spent a portion of this afternoon reading the blogs of several other little girls with trisomy 18. It was helpful to learn about daily life with them and their development in general. But it was also a very painful reminder to find on several blogs announcements of the babies deaths.

At times I get so frustrated knowing these children die so early. It's just "not fair!" And yet every one I read about has touched so many, many lives. So many of these precious T-18 children are described as "angels" and are fiercely loved. And all of those that died have gone to be with Jesus. So how could that not "be fair?" Logically, it's wonderful! Emotionally, it's hard to deal with.

Well, it took awhile, but I officially have the family cold. :(

Saturday, October 16, 2010

Lilly verses the bulb syringe

Cold germs spread like wildfire in my house leaving no one standing but me. My oldest daughter is much better but my youngest has definitely got it. Yep Lilly has a cold, though thankfully, it seems like a light case. And since she can't blow her nose I had to get out the dreaded bulb syringe.

I've always found the bulb syringe to be annoying. It never really seemed to suck the stuff out of my babies noses very well and just made them mad. However, I now know that they simply did not have the perfect-bulb-syringe-nose. Lilly does. The thing fits exactly into her nose and I can execute some amazing snot sucking with it! Whenever I hear Lilly's breathing getting too congested, a couple rounds with the bulb syringe and she's breathing great! And she doesn't even complain about it, which is equally amazing. Perhaps it just seems incredibly insignificant considering all she's suffered through already.

Thanks be to God that my worries about Lilly getting a cold and being really bad off were not to be.

Friday, October 15, 2010

A Trip to the Pediatrician

Weight check = 5 lbs. 10 oz. :)

Today Lilly and her brother both had checkups with their pediatrician. Everything looked good! Lilly had 2 vaccines, one in shot form. When the nurse gave her the shot, Lilly's face turned red a few seconds then that was it. No tears at all. (I know people that get their kids every vaccine and others that say they're all bad. I guess I fall in between those views. I've studied The Vaccine Book and from that information have choosen some vaccines I want my kids to have, on a staggered schedule. Especially Lilly, because of her lack of thymus.)

Everyone in the family but me have colds. We are concerned that Lilly might be getting one because she's sounding congested and her nose is starting to run. I hate that. I am trying not to feel worried about her being sick.

Some news that made us cheer today: G., another trisomy 18 little baby girl who is about a month younger that Lilly, had heart surgery today to repair her VSD. She made it through the surgery, though last I heard, is still on the ventilator. (Please say a prayer for G.) We get so excited hearing about other trisomy 18 babies that are living and cheer them on.

Hmmmm ... right now sneaky Lilly is working a sock off her foot. Finally she's caught in the act!

Thursday, October 14, 2010

Sleeping Beauty

Weight check = 5 lbs. 8.5 oz.

Lilly says "hi" to everyone reading this! She's laying on me and looking around and "talking" to me. She still doesn't make a lot of talking/cooing noises, but she is slowly doing more, sometimes for 5 minutes or so at a time.

Have you ever taken pictures of something only to find the pictures didn't do the subject justice at all? That's how I feel about this picture of Lilly that I took this morning. She's sleeping in her co-sleeper and just looked so incredibly at peace that I just felt so filled with adoration for her.

Praise God Lilly looks so much more peaceful in general these days. We used to comment about all the terrible faces she would make (before the heart procedure) and now I think they were due to pain because she doesn't make them anymore. Lilly is just content so much of the day now, no matter where she is. Starting several days before we left for the hospital in Florida, Lilly would cry almost anytime I put her down - day or night. I now feel pretty sure that was because she was hurting so bad. Now she even sleeps all night long in her little bed next to me without a peep. (The first thing I do every morning when I open my eyes is to look at her - and to thank God that she - and all my family - are alive another day.)

Yesterday my husband had a phone interview with Social Security about Lilly. (I mention this because several people have asked us if we did this.) Because she has trisomy 18, Lilly is officially a disabled citizen. So we checked into seeing if she qualified to draw some social security benefits. (Which would be nice since supposedly the system will be bankrupt by the time we qualify to draw "our own money" back out.) But no, Lilly doesn't qualify because our income is over something like $30,000. (Though if she were hospitalized for several months then she would get a little something, if we started the paperwork way in advance.)

This afternoon was the "big day." The day to change Lilly's NG tube. I was a bit nervous about it as I worry about hurting her. But, I am thankful to God to say, I did it! Lilly didn't even whimper when I pulled the old tape off her face. She did fuss some as I put the new tube in, as she always does. (Especially when it makes her gag as it goes down her throat.) But after I was done and had tested that it was in place (perfect pH test results!) I held her and we went on a nice long walk and she was happy.

Housekeeping note: I'm still pretty backed up on e-mail from being gone so long, and there are still several blog comments I intend to answer. Please continue to be patient with me! :)

Tuesday, October 12, 2010

Sneaky Lilly

Weight check = 5 lbs. 9 ozs.

Lilly kept playing a trick on me this morning. I had her in her bouncy seat in the kitchen while she napped and I was in and out of the room. When I came in to check on her, I saw she had kicked her sock off. I put it back on her. Then a little later the sock was off again. I put it back on. This went on several more times. It just struck me as funny because every time I would look at her, she'd seem to be sound asleep, looking totally innocent.

My husband told me that last night, Lilly opened her thumb up enough to hook it in her NG tube and was tugging on it like she was trying to get it out. I'm sure that will be a happy day for her to get it out. But, it certainly is helping, since she's gaining a half ounce a day. I told her that not many babies get to eat while taking a bath like she did today. She looked at me, completely unimpressed.

Monday, October 11, 2010

Sunday, October 10, 2010

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! :)

Saturday, October 9, 2010

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.

Friday, October 8, 2010

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!

Thursday, October 7, 2010


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.

Wednesday, October 6, 2010

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:

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, . . ."

Tuesday, October 5, 2010

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!

Monday, October 4, 2010

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!

Sunday, October 3, 2010

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!

Saturday, October 2, 2010

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! :)

Friday, October 1, 2010


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