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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

Monday, August 29, 2011

What a difference a year makes!

J.G. recently told me that in getting onto Lilly's current blog post she ended up in a blog post from LAST August. She said her heart sank as she looked at Lilly's picture thinking she must have lost a lot of weight from her cold. But then she realized what the problem was and was so relieved to get to this year's August posts and see that Lilly still had all her chub.

I thought it would be interesting to post a couple "before and after" photos showing Lilly last August, and this August. For those that were not blog readers from the start - I first began posting in August 2010. On August 28 last year Lilly had dropped to 5.0 lbs. (She was 5 lbs. 4 ozs. when born July 4, 2010.) She continued dropping weight until she hit 4.8 lbs. By then we were in a hospital and she was put on a feeding tube. That saved her life. She is now 12 lbs. something.

THEN - Poor super skinny Lilly on the changing table August 2010 - she had zero fat rolls then and her bones stuck out. She actually had skin hanging in some places:

NOW - Lilly on the changing table just a week or so ago - sporting her hard earned chubbiness:

THEN - Lilly wearing a white dress for church and looking so fragile:

NOW - Lilly wearing a similar white dress for church earlier this month - check out those round cheeks and arm rolls!:

God has been so generous to us with Lilly! She is still tiny for a baby of almost 14 months. But for Lilly, she looks fantastic. Thinking back on her life, she still amazes me what a fighter she is. A "little firecracker" for sure!

Some sad news this weekend. There is a family that lives less than an hour from us that had a little girl named Lakia last December. She had full Trisomy 18. They brought her home from the hospital at 2 lbs. - something. She was a little fighter too. Ate well and gained weight pretty well. A big personality. Her mamma came to see us during Lilly's hospitalization this past May and I talked regularly on the phone with her. Anyway, Lakia died Friday night. She was 8 months old. All that is known right now is that she was having a BM and her heart rate dropped. Paramedics came and tried to save her but couldn't. (They are having an autopsy done.)

It reminded me again that life is so very fragile and we really don't know what to expect from day to day, though we certainly tend to coast along not thinking about death. Not that that is wrong - I certainly don't believe God wants us to worry or live in fear. But we do need to really appreciate each day of life and thank Him for it. Every morning when I open my eyes, I look at Lilly in the co-sleeper next to me and after I've made sure she's still breathing I pray "Thank you Lord for another day with Lilly!" I don't always, but then thank Him for another day with the rest of my family members.

Before Lilly was born, when we had no idea if she would survive her birth, I designed her gravestone. Just in case. Besides her name, birth and death dates, I sketched an Easter lily flower in one corner, and wrote "2 Sam. 12:23" in another corner. I thought of this verse after I heard of Lakia's passing away. Here is part of that verse (spoken by King David after his infant son died):

"I will go to him, but he will not return to me." - 2 Samuel 12:23

Isn't that incredibly comforting? To know that when one of your loved ones has died, if you are and they were believers in Jesus Christ, then you will be together again for eternity? How hard it would be to except a loved one's death if you knew that was it forever.

OK - I didn't mean to end this post with gloom. And really it's not gloom - it's HOPE! Hope is what I live off of from day to day!

On a completely different topic - we came through the hurricane easily. It was pretty windy Friday and Saturday and we had rain off and on. But that was it.

And Lilly is pretty much over her cold. Just some thick snot still coming out at times. But she is feeling good!

Thursday, August 25, 2011

Heart catherization re-scheduled

Lilly's heart catherization was re-scheduled for September 8.

It was good she didn't have it this morning. She had an incredible amount of congestion and was spitting up a lot of snot, poor baby. After a lot of suctioning and a nebulizer treatment, she fell back asleep and had a marathon nap session - 5 hours!

It must have been just what she needed because when she woke she was full of energy and smiles and her nose hasn't run since.

So Lilly has had a productive afternoon. She was busy working on her laptop computer. Then she sat in her special chair in the kitchen to cheer on big sister, who's night it is to make dinner.

Something exciting Lilly has started doing this week is opening up the forefinger and thumb of her left hand, for the first time. It is so wonderful because those were the last two fingers to unclench. I look forward to her learning to pick things up one day. Hopefully before too long!

Lilly's little friend Giuliana was featured in a short news update in her hometown yesterday. Giuliana is exactly one month younger than Lilly and has mosaic Trisomy 18. That is rarer than full Trisomy 18, which Lilly has. Giuliana can roll, scoot around, and can almost sit by herself. We're so proud of her! I've observed that the mosaic children tend to be able to do more physical things sooner than those with full Trisomy 18. (In general.) Though Giuliana's mother told me that Lilly was able to lock her legs to stand before Giuliana was. One thing I've noticed is that though these children have a lot in common - the T-18 still affects each one so differently so you just never know what to fully expect. If you'd like to see Giuliana's news clip go to:

I'll never understand why God created some people the way He did. But I know every being He creates is for His glory. That includes Lilly and all the others with Trisomy 18 who have died already or are still alive. I love this verse:

"Indeed, the very hairs of your head are all numbered. Do not fear; you are more valuable than many sparrows." - Luke 12:7

Wednesday, August 24, 2011

Heart catherization postponed

Lilly is still having some extra congestion so her cardiologist thought it best we postpone her heart cath. He is concerned about the additional risk since she will have to have anesthesia. The lab is supposed to call me back tomorrow with a new day and time.

I admit I'm disappointed because I just want to get all this heart stuff done asap before she gets really sick from something. But I certainly don't want to take any chances. I keep thinking about the little boy Caleb, who I mentioned in my last post, who has since had several more heart attacks. So perhaps God allowing Lilly to have this cold right now prevented something worse from happening.

"I waited patiently for the LORD; he turned to me and heard my cry." - Psalm 40:1

Lilly had occupational therapy yesterday. The therapist commented several times that Lilly is such a hard worker and doesn't whine like some of the other children she works with. As she moved Lilly through different positions, she noted how much stronger she has gotten, just in the past few weeks she has worked with her. She said Lilly's body wants to crawl and roll over. But that she can't because she doesn't have the neck strength to pick up her head.

On a completely different note, Lilly experienced her first earthquake yesterday! Only the disappointing thing is - I didn't even notice and I doubt she did either. At the time of it we were sitting at the kitchen table and I was giving her a nebulizer treatment. The machine is very loud and vibrates the table. Plus Lilly was MAD about the treatment and was crying and squirming about. I was so focused on her I didn't notice anything unusual.

Monday, August 22, 2011

I think she's made it!

Today's photo credit also goes to my daughter T. She took this one a few days ago. What a big smile Lilly! As you can tell we love taking pictures of Lilly. I have thought off and on how I wish we had a special chair for pictures. Something that held Lilly upright better and especially kept her neck and head straight. We're limited in our propping places around here. But, Lord willing, one day she will learn to sit up straight on her own and hold up her head.

Lilly still has some lingering congestion from her cold. But it's only in her head. She is still acting like she feels just fine! She's smiling, talking LOUD, and playing with her toys as normal. If not for the occasional flood of green snot (!) I wouldn't think anything was different. I can't express what a relief this has been. Lilly actually handled a cold like a "normal" child! We stayed out of the emergency room, thank God. I am just so happy and relieved.

I'm thinking the nebulizer treatments really helped. (By the way - if you use Xopenex, they have a special "Breath for Less savings program" where you can get the medication discounted or for free. I am still in shock that we qualified for FREE!) Also, at night I increased her oxygen from a half liter to one liter. Did lots of saline spray and suctioning when she was awake. Lots of hard patting on her back to get phlegm loosened. And I ran my diffuser 24/7 with an essential oil mixture for colds. Also used Hylands C-Plus Cold Tablets. And of course lots and lots of prayers!

Tomorrow I am going to let her cardiologist know what's been going on in detail, so he can decide if it's still safe to proceed with the heart cath on Thursday. I'm thinking maybe not, since anesthesia is involved. But I am not a doctor.

In the meantime I am continuing to:

"Give thanks to the LORD Almighty, for the LORD is good; his love endures forever.” - Jeremiah 33:11

Saturday, August 20, 2011

So far so good ...

Lilly is holding steady from her cold, so far. Yesterday afternoon she started treatments with her nebulizer. She's getting them delivered through her infant sized turtle mask every 4 hours.

Lilly seems like a "regular child" with a cold right now. Yesterday she played a little with the animals hanging on her bouncy seat and talked some. She even smiled for big sister last night. (Last picture.) She sounds pretty congested but so far it is staying in her head. She's getting lots of saline spray and suctions. Since she wasn't doing too bad, yesterday, both her therapists came at their separate times since they were nearby anyway. I thought we might need to end the sessions early, but Lilly did great. She absolutely loves therapy.

Yesterday afternoon I hooked her up to the pulse ox to check her heart rate and oxygen level. (This is a great clue if her body is really struggling.) Much to my surprise it was better than usual! Her oxygen levels were in the upper 90s and even 100. And while she has a cold! (It is usually mid to low 90s because of the VSD in her heart.) I have not had her on the pulse ox all summer long so perhaps her body is naturally like this now. Which means maybe we can get rid of the oxygen at night! (I know I know I'm rushing ahead in my thoughts.) We'll track her once she gets better and see.

Lilly slept normally last night, praise God, only periodically fussing in her sleep as she rubbed at her oxygen cannula. The pulse ox did not alarm once. I couldn't believe it! I laid there a lot last night and this morning just thanking God. And thanking him for my peace too. I don't feel so panicky today. Lilly is in my lap right now chewing her thumb and talking a little. Thank you everyone for your prayers for Lilly!

I've mentioned a little boy named Caleb on this blog before. He is 2 years old and has Trisomy 18. Just a couple days ago he went in for a routine procedure to get his tonsils and adenoids removed. Shortly after that he had a heart attack and it looks like the left side of his heart is damaged. Please pray for his recovery and his parents and siblings peace. Stuff like this is so hard. We know our special babies most likely won't have normal lifespans. But it is just so hard to not to want every possible second with them and so we keep pleading with God for more.

"For with God nothing will be impossible.” - Luke 1:37

Friday, August 19, 2011

Lilly has a cold :(

Lilly came down with a cold in the middle of the night last night. She's still sleeping now but is restless and congested. Please please pray that she will get better quickly. When Lilly gets sick she tends to go downhill very quickly and ends up in the hospital emergency room.

If she doesn't get better quickly, we'll need to postpone her heart cath scheduled for next Thursday. (Which we need so that we can get her heart surgery scheduled. Surgery which she needs so that her heart can handle her illnesses better!)

Thank you.

"Heal me, O LORD, and I shall be healed; Save me, and I shall be saved, For You are my praise." - Jeremiah 17:14

Wednesday, August 17, 2011

Liquid whole foods coming soon ...

Here's a picture of Lilly with her brand new Vitamix mixer. This is the "mother of all mixers." It can even liquify chicken! I got it because mouth feeding is still going so terribly slow with Lilly and I want to start getting some bigger quantities of real food into her belly. Right now she is still getting fed breastmilk with her supplements added in. (StemKine and VitAloe.) But since she's 13.5 months old now she needs more nutritionally I think. I really don't want to go with man made formulas, especially since formula tended to upset her stomach so badly when we were adding it in when she was younger.

So I've been researching real foods and g-tubes. The one thing everyone said is you gotta have a really good blender, like the Vitamix and that my KitchenAid wasn't going to cut it. I'm excited about this process. I have a need in me to make my children's food and that includes Lilly, even if she does mainly eat through her g-tube.

Anyone that knows anything about a Vitamix knows they are crazy expensive. However, in my research online I found that they have a "medical necessity program" where qualified people can get a nice discount on one. I got a refurbished one which made the price even lower.

[If you're someone that would like to do this here's the proceedure: have your doctor fax Vitamix a note on letterhead saying why your child (or you!) needs a Vitamix (feeding by g-tube is the reason we gave). Have them put your name and phone number in that note. Have the doctor fax to "Sue" at Vitamix (440) 235-3726. When she get's it she will contact you and you can purchase the blender by phone.]

Speaking of g-tubes, yesterday was an absolutely crazy g-tube day for Lilly. Her g-tube button got pulled out of her not once, but twice! It was horrible but at least I knew how to put it back in and the procedure was so much easier for both of us as compared to when I used to have to put the NG tube up her nose. Then in the evening, she was napping and the milk pump tubing came out of the g-tube extension and milk was everywhere before we realized. Guess she was pulling Cleopatra bathing in milk again. Thankfully today is going smoothly with the g-tube!

"So, whether you eat or drink, or whatever you do, do all to the glory of God." - 1 Corinthians 10:31

Monday, August 15, 2011

Lilly learns to laugh!

Last Friday, Lilly was in her bouncy seat on our kitchen table as usual, while we ate dinner. She suddenly started making a noise that sounded a bit like a fuss. But her whole face was lit up and she had the biggest smile. She kept doing it and smiling the whole time. We wondered if she was laughing. And then on Sunday she did it again. And again today! So yay!!!! Lilly has finally learned to laugh. What a blessing to us all. :)

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

I just got an appointment for Lilly's heart catherization. She is scheduled for next week, on Thursday morning. Please be praying that she will handle the anesthesia just fine.

Also last Friday, Lilly's occupational therapist brought some little splints for her hands. They are to help her open up her hands. She is doing pretty well with her right hand on her own, but her left hand needs help. And on both hands she needs to learn to not clench in her thumbs so tight. Lilly is wearing the gloves overnight.

Here is Lilly modeling the splints the first day she got them:

An up close shot - you can see her thumb sticking out a little - she has plenty of growing room:

Sleeping beauty:

Sunday, August 14, 2011

Lilly's first boat ride

Yesterday was my husband's birthday and we celebrated by going out-of-town to go boating with one of his childhood friends. This has been a pretty rough year for us and it was a welcomed break to spend an afternoon just having fun. The weather was amazingly perfect. Warm, but not hot or humid, and a nice breeze. Lilly seemed to enjoy herself and stayed awake almost the whole time just looking around.

Here is a picture of Lilly using her special powers to drive the boat and ...

Pull her daddy on a wake board:

Lilly enjoyed laying on the tube too though she was disappointed there was not a life jacket small enough for her to wear so she could actually ride it on the water:

Thursday, August 11, 2011

Lilly books

Our family loves books. Reading time is a sacred thing in our home! Our bookshelves threaten to overrun us, we have so many. My husband and I often say "so many books to read, so little time!" Reminds me of what King Solomon wrote:

". . . Of making many books there is no end, and much study wearies the body." - Ecclesiastes 12:12

Library day is an exciting day. Lilly got to go with us yesterday since it is summer and not the scary-dangerous-flu-season yet. She enjoyed getting out. Today's first picture is of Lilly helping big sister search for a book at the library computer.

At our home we have three special "Lilly books." In today's second picture you can see two pink books with Lilly on the cover. These are books I have had printed off her blog. Volume 1 is from when I started the blog last August through the end of the year. Volume 2 is this year January 1 - June 30. They are wonderful keepsakes for us. I got three printed of each: one for me, one for my older daughter, and one that I have put up for my son for when he's old enough. We had the books printed by:

A number of you have said you miss the picture of Lilly's smiling face that we used to have as our blog header. If you scroll to the bottom of this webpage, you can see that picture again. :)

The last two pictures are of Lilly's medical records notebook. This enormous tome is in a 3 inch binder and weighs over 7 lbs. It's the kind of thing I'd grab if there were a fire in the house! It has all of Lilly's medical information and therapy information. I take it to all her appointments with us and of course hospitalizations. It has proved many times to be invaluable. The nurses have all thought it was great and can even easily find information they need in it.

Tuesday, August 9, 2011

Cardiologist update

Weight check 12 lbs. 6 oz. (no change here but that is normal for Lilly's age)

Yesterday Lilly had an appointment with Dr. R, her cardiologist. It was a good appointment. The echo showed no worsening in the heart.

Dr. R said that he had talked to Dr. E at Wolfson's Children's Hospital in Jacksonville, FL. (Lilly had a pulmonary artery band put on by the surgeon at this hospital last fall.) Earlier this spring that hospital made the decision not to do Lilly's needed VSD repair surgery (she has a large hole in her heart). However, because Lilly's heart has actually slightly improved since that decision, they have reconsidered and are open to doing the surgery. Dr. E said they want to do what's best for Lilly to have the longest life possible with us.

But first they want Lilly to have a heart catherization done. She will have to be put out under anesthesia and then Dr. R will make an incision in her upper thigh area and go in to her blood vessels with a catheter (about the size of a spaghetti noodle) and go up to the heart and measure pressures there. (I think I got that right!) It is usually an out patient procedure, but they may keep Lilly overnight just to be sure she's OK. We should be getting an appointment set up this week and the procedure will most likely happen in 2 weeks.

If everything goes well with the heart catherization, then Dr. E said they most likely will do the surgery on Lilly. He said that they are willing. Dr. R wants to see the surgery happen in the next 4-8 weeks. We all want Lilly to have it before the dangerous flu season begins.

Because Lilly is doing so well right now, and her breathing is good (other than the usual congestion in her head) Dr. R said let's stop giving Lilly her Lasix. We're just to listen closely for coughing, or a rattling or wet sound in her lungs. This is very good as I've been hearing from other mom's of Trisomy 18 children that Lasix is hard on the kidneys and can cause kidney stones. Dr. R agreed with this. T-18 kids tend to have kidney problems. Lilly will soon be having her kidneys scanned to check for any issues. This is supposed to be done yearly throughout her life.

As we left Lilly's appointment yesterday, I told my husband (for the zillionth time) I have learned way more medical stuff than I have ever had any desire too. My criminal justice background did not prepare me for this! We also talked about the amazing things modern medicine can do. Without it, Lilly would probably not be alive, unless God had performed a miracle in her after birth. (She just did not have the strength to eat enough.) And, we talked about how blessed we were that Lilly was born in this time period. It is amazing how many babies and young children died in past times, and that was sadly normal. (As a family we're reading the Susanna Wesley story (mother of the famous Christians John and Charles) and in her life Susanna had 19 children - 9 of which died young.) In this day and time, we just assume our children will live normal lives. And really that is very presumptuous of us.

"Why, you do not even know what will happen tomorrow. What is your life? You are a mist that appears for a little while and then vanishes." - James 4:14

Saturday, August 6, 2011

The kindness of strangers

(1st picture) Lilly loves her big brother! And he frequently tells her that he loves her too. :)

Lilly continues to have physical therapy each week (right now Friday mornings). Yesterday Lilly started occupational therapy. The occupational therapist (O.T.) is to work with Lilly's fine motor skills. She worked a lot with Lilly's hands and said she would order her some splints right away to train them to open more. She showed me a number of exercises to do with Lilly's hands each day, in additional the stretching and massaging we already were doing. We had hoped the O.T. would be able to work with Lilly for mouth feeding, but she decided she wasn't specialized enough to help Lilly with that.

(2nd picture) A couple weeks ago, a family at church brought Lilly a gift basket that a neighbor had made for her. The basket was beautifully decorated with flowers. (I was actually surprised at the impression that special touch made on me. I guess in this hurry up world of gift bags where you toss in the present and shove a few pieces of tissue paper in, something beautifully done with a little thought really does make quite a statement!) The woman put in a card and a nice sweater for Lilly. We were so touched. It was definitely another "Lilly Blessing!"

One thing in our Lilly journey that has continued to amaze us and make a huge impression on us is the number of strangers that have reached out to us. We have received hundreds of cards from people we don't know, gifts from strangers, supportive blog comments from many people we've never met, and the prayers of thousands and thousands of people. Just this morning I checked this blog's stats section and saw that people had recently visited Lilly's blog from countries far away like Romania, Germany, the United Kingdom, Hong Kong, Slovenia, the Netherlands, and New Zealand. (Hey "Carol from New Zealand" - thanks for all your blog comments! We are grateful for your support.)

As I have posted here, my father-in-law has recently passed away. His visitation (viewing), funeral, and burial were all the same day. When we arrived for the visitation, my son had just fallen asleep and Lilly was drifting off. So we decided it was best I stay in the car with them and let them get a good nap before the funeral. When my husband finally came out and got us, we had just a few minutes to meet people. He carried Lilly in and I tell you it was like a little celebrity coming into the room. People flocked all around her to see the Lilly that they had been reading about and praying for. Once again we were just stunned at the number of people that said they frequently read Lilly's blog and pray for her and us. More Lilly Blessings.

My husband and I tend to be introverts. But one thing we've been learning, from the example of so many, is how to reach out better to others. We've done all sorts of things that we probably never would have thought of doing before. What amazing examples God has sent us. Hmmmm ... having a child with Trisomy 18 is not only faith building, it's also character building!

"Do not forget to entertain strangers, for by so doing some people have entertained angels without knowing it." - Hebrews 13:2

"For I was hungry and you gave me something to eat, I was thirsty and you gave me something to drink, I was a stranger and you invited me in," - Matthew 25:35

Wednesday, August 3, 2011

13 Months Old! And Jesus in the room

[picture - I never get tired of looking at sleeping children!]

Happy 13 month birthday Lilly! And happy birthday to Lilly's friend Giuliana who made it to one year old today! Another miracle baby!

Yesterday Lilly and I were gone from home half the day for appointments with her audiologist and ear-nose-throat doctor.

The audiologist went over the results of Lilly's hearing test (done in May) in more detail than she had previously done on the phone. She showed me on a chart what types of sounds Lilly most likely heard. Lilly hears better in her right ear and in that ear should hear most of what we say. Though there are some letters in words that she may be missing. But not in her left ear. That ear needs louder sounds like dogs barking, vacuums, or babies crying. She did a few hearing tests on Lilly while we were there. Lilly cried when she looked into her ears, but did find otherwise. The audiologist did say that for Lilly much of the transmission gets lost in her ear canals because they are so incredibly tiny. But, as Lilly grows, then hopefully her ear canals will grow, and then she will hear better.

We talked about hearing aids and I said that we weren't going to pursue it now because Lilly did respond to our voices. Probably a good thing as she noted that the tops of Lilly's ears are so thin and soft and that it would be tricky to get hearing aids to stay in them. (They'd need tape.) (I knew her ears were really floppy but hadn't considered that before. But I know if I put sunglasses on Lilly and they don't have a strap to keep them up and on, the sides of the glasses push her ears down.)

After that appointment we had a long wait to see the ENT. (We should have only waited about 25 minutes, but they were running ONE HOUR behind. Sigh.) Nothing really to tell of that appointment - the two doctors she saw asked a lot about Lilly's breathing. They said that once she had her heart surgery, the pulmonologist would probably start weaning Lilly off night time oxygen. Yay!!!!!!!!

We had an interesting experience while waiting in between appointments. We were in a little waiting room were a steady stream of people were coming in and being called out. At one point a woman came in with her baby and mother. They smiled and asked how old Lilly was. When I said "one year" they both looked quite startled, especially when I said "no Lilly was not a preemie but was born 2.5 weeks late." The woman's baby was 10 months and even though not chunky like Lilly, looked so big next to Lilly. When I explained about the Trisomy 18 and that Lilly was now one and that made her one of only 10 percent that survive that long, the mother loudly exclaimed, "I KNEW I felt Jesus in this room when we walked in!!!" I smiled and told her we gave God the glory for Lilly being here with us. Then we all smiled and they amened. Praise the Lord! :)

"However, as it is written: "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

Monday, August 1, 2011

Staying cool ...

The weather here has been so hot. Very humid and upper 90s-low 100s. Not good weather to take Lilly outside. So she has been keeping busy inside and staying cool.

Grabbing and bopping her toys in her bouncy seat:

Swinging until she gets sleepy from the motion:

Sending e-mail on her laptop:

Playing with her caterpillar which ALWAYS makes her smile:

Playing outside on the slip 'n slide - daddy pushes her down it and she gets the biggest grin!: