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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, October 31, 2011

Party at a farm

This past Saturday, we took one more "pre-surgery" family adventure. The birthing center, where I went for care when I was pregnant with Lilly and my son, was having a birthday party for itself at a farm. This birthing center is the only free-standing birthing center in this state and I always felt blessed to go there. (It's about an hour from us which is fine - except when it comes for delivery time! We made it there with only 15 minutes to spare when my son was born. Lilly had to be born at the hospital, 5 minutes from the birthing center, and I think we had about 20 minutes to spare when she was born there.)

Anyway, my family loves any excuse to be on a farm, so we really enjoy this annual celebration. (We are praying that we will one day have our own little farm.) We enjoyed some food including delicious cake, a tractor pulled ride around the farm to see all the animals, and just walking around looking at things. I was so happy to see M., the midwife that helped me so much when I was pregnant with Lilly - and helped the doctor at the hospital deliver her. The nurse that was in the room when I delivered Lilly was there too. They were both happy to see us and especially thriving little Lilly.

Below are a couple pictures from the farm.

Lilly and I getting ready for the ride around the farm. (Lilly has decided she doesn't like riding in my wrap anymore and wants to ride in the Snuggli. She LOVES being back a little from my body so she can look all around more easily. Once she can hold her head up well we're going to the Ergo!) :


My son, wearing his dog costume, doing one of his favorite things in the world - pretending to drive a tractor! He LOVES engines and motors of all kinds and has an amazing understanding of them. :


My daughter had so much fun feeding a calf. She is dressed up like Lucy from the Narnia series. (Thank you C. family for the costume!) :


I had to admit - that was the cutest cow I've ever seen! :

"Praise to the Lord, the Almighty, the King of creation!

O my soul, praise Him, for He is thy health and salvation!"

(from the hymn "Praise to the Lord, the Almighty")

Happy Reformation Day!

Happy Halloween! Or as we now prefer to celebrate in our house - Happy Reformation Day! My older daughter's favorite person in history is Martin Luther. It was on this day in 1517 that Luther nailed his "95 Theses" to the castle church door in Wittenburg, Germany. This document was a list of things that Luther believed needed reforming in the Catholic church.

I'm sure many of you are familiar with this hymn that Luther wrote - "A Mighty Fortress Is Our God." It begins:

A mighty fortress is our God,
a bulwark never failing;
our helper he, amid the flood
of mortal ills prevailing.


Lilly's outfits in today's pictures are from my aunt and cousin who wanted to be sure she was dressed in traditional orange and black.










Sunday, October 30, 2011

Surgery week ahead


This morning I got Lilly ready for church in her blue dress, which she's starting to grow out of! She got to wear her new mary jane shoes, knitted by my sister-in-law K. (2nd picture). After I had Lilly ready, I put her in her bouncey seat. Within minutes, Sneaky Lilly had kicked one shoe off and was working off the other, and wiggled out of her headband (last picture).

We're getting a lot of questions - in person and by e-mail - as to what our plan is for this week for Lilly's open heart surgery. We are going to leave for my aunt's house in Jacksonville, Florida on Tuesday. Wednesday morning Lilly will have pre-op at Wolfson Children's hospital. She'll have an EKG, echo, and blood work. They will let us know that afternoon what time she needs to be back at the hospital the next day for her surgery.

Surgery will be Thursday and will last about 5 hours. (What a way to celebrate her 16 month birthday!) Average recovery time, at the hospital, is 10 days. My husband will stay at the hospital with Lilly 24/7. I will be there during the days, and will go back to my aunt's house in the evenings to spend the night with our other two children. (Yay for homeschooling - it's easy to take everyone with us. And yes, the school books are going too!)

We will have a laptop with us at the hospital and there is supposed to be wireless there. So I will be updating the blog from the hospital. But if there's any problem, I will update from my aunt's house in the evenings.



Thank you so much to everyone for praying for Lilly! Please continue to pray that the surgery will go smoothly and that Lilly will recovery quickly. It is so exciting seeing what the Lord is doing with her life. One of my very favorite verses in the Bible is Jeremiah 29:11:



"'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.'"

Friday, October 28, 2011

Rick Santorum's video of Bella

My husband sent me the below link to this new video of Rick Santorum with his daughter Bella. Bella is three years old and has Trisomy 18. She is one happy little girl!

http://www.ricksantorum.com/blog/2011/10/meet-our-daughter-bella?utm_source=housefile&utm_medium=email&utm_campaign=family_102711&

Thursday, October 27, 2011

Reading is fun!



Weight check = 13 lbs. 1 oz.

Height = 26.5 inches


Today Lilly and her brother had check ups with their pediatrician. Both did great. Lilly is growing well, including her head. (Yay - brain is growing!) She's still under the 3rd percentile for everything, but for a Trisomy 18 baby, she's just fine.


After bolus feeding Lilly, I have to keep her still and upright for about 5 minutes, or else whatever I just gave her will come right back up. What seems to be her favorite thing to do during that time is to look at a large board book we have that has a different animal on each page. Each animal has a part that is for touching. For example, the bunny in today's picture has a fuzzy tail. I take Lilly's hand and help her feel the pages. She seems to really focus on all the animals, except the cat. (I guess she prefers dogs to cats like the rest of our family!)

Tuesday, October 25, 2011

Video: Lilly laughing

We have finally been able to get Lilly laughing on video. Last night, she just got so tickled at her stuffed caterpillar named Hank. First when I was holding her, and then my husband. Here she is with her funny little laugh:



video

Monday, October 24, 2011

Pretty dresses and a "real food" e-book

Today's pictures are of Lilly wearing her new smocked dress. It's the "Petit Ami" brand which I seem to always be drawn to. (I like the "old fashioned" style.) Ebay usually has a nice selection of these dresses, so I wasn't too disappointed when I needed to move Lilly up in sizes. :)

Lilly seems to continue to gain weight and be thriving on her "real food" diet. Yesterday I introduced pureed egg (with a little breastmilk) through her g-tube. She's done great with it and had it again today. (We get organic free-range eggs delivered by a local chicken farmer.)

For the past few years, I've gotten more and more interested what had been dubbed "real food." (This just means eating food that is close to it's natural state as possible. i.e. no processed food, not lots of added sugars, pesticides, etc.) It's what I think of as "basic food": organic meat, fruits, veggies, whole grains, dairy (real butter!), etc.


When I was pregnant with Lilly and found out that somethings weren't right with her, I really really tried to just eat organically and did things like adding in homemade kefir. I wanted to do everything I could to help give her a better chance of life. And since Lilly's immune system is always in a fragile state, I continue to try to learn new ways to feed my family better so we can be healthier. I recently came across a wonderful e-book called Real {Fast} Food by Trina Holden. This book is perfect for me! It is filled with time saving techniques and the basic kind of recipes that my family loves. (The first one we tried was salisbury steaks and we've all been craving to have it again ever since!) Most of our menu for this week will have more recipes from this e-book. I don't think I've ever really gotten excited about a cookbook before (I honestly don't even like cooking meals. I prefer to bake bread or something like that.) Anyway, it was the best $6.00 I've ever spent on something food related. If you're interested in learning more about the e-book, or purchasing it to download, go to: http://www.trinaholden.com/p/real-fast-food.html Scroll down and you'll see that you can download it in pdf, Kindle, or Nook.


Praise God, Lilly is staying well right now. She's so happy too! My husband and I were discussing last night that we don't even remember the last time she cried. We're excited that if Lilly continues to thrive, then next week we will get to leave to drive out-of-state for her open heart surgery where they'll patch the hole in her heart. God's plan for this little girl has completely surpassed everything we had hoped for. My current goal for Lilly is that she'll be one of the 60% of Trisomy 18 children (of the 5-10% that made it past age one) to make it to 5 years old. :)

I also hope that the medical profession in general will notice that there are children like Lilly that survive longer than statistics say they should, and will do what they can to help them. Our medicine is so advanced, I just don't see why any of them wouldn't want to try. We are so thankful that Wolfson Childrens Hospital in Jacksonville, Florida is willing to operate on Trisomy 18 children. But I also admit that at times I am completely annoyed that none of the big hospitals around us will operate on Lilly. (Though thankfully the majority of the doctors in those hospitals treat Lilly well and are kind.) Anyway, this reminds me of what one doctor at Wolfson's told us last year - that in the past, children with Down Syndrome were treated the same way.


Trisomy 18 is still considered "incompatible with life," but Lilly is one joyful little girl who I'm sure feels very "compatible with life." This scripture is so fitting for her:

"For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well." - Psalm 139:13-14

Friday, October 21, 2011

Cooler days



Weight check = 12 lbs. 14.5 ozs.

The weather here officially feels like fall now. Lilly has had to get out her long sleeves and leggings. Long time blog readers know that we nicknamed Lilly "Sneaky Lilly" because she so often has one sock kicked off. (The "sneaky" part is she always manages to do it when we aren't looking. She's just sitting there all still and innocent then a moment later the sock is laying on the floor.) So I just got Lilly's first pair of Robeez off E-bay for her to wear around the house. (They are little leather slippers with soft bottoms and elastic around the ankles.) Maybe those will stay on!

When we go out, Lilly has a new pair of beautiful black knitted Mary Janes, courtesy of my sister-in-law, K. (A picture coming soon.) K. tweaked a pattern she found, to make it longer for Lilly's foot and the strap longer to fit Lilly's fat roll on the top of her foot. When I initially looked for shoes like that, I really couldn't find any in Lilly's size. Then it finally hit me that other kids her size are wearing walking shoes and had no need for shoes like this. :( But K. saved the day by knitting a special pair of shoes for Lilly.

Yesterday I called to get Lilly pre-registered with Wolfson Children's Hospital in Jacksonville, Florida to get things in order for her upcoming heart surgery. (Nov. 3.) I think they told me surgery is supposed to cost around $47,000 and last about 5 hours.

Lilly's crazy cowlicks all over her head make for some funny hairdos. The front part naturally sticks up into a mowhawk. In the back of her head are two "swirls" - you can see them in this last picture - they're the areas with a bit less hair. The hair growing in between is long and is actually growing straight UP her head. Its so unique and cute and funny. I figure that as her hair grows longer, the weight will pull it down eventually. When I first started peeking online into the Trisomy 18 world, I found one listing of "markers" that a mom had posted. The swirly cowlicks on the back of her son's head were on the list, given to her by medical professionals, of being because of Trisomy 18. But that was the only place I've ever seen that particular marker mentioned.

Hair is so unique to us all. I've got crazy thick dark hair. My husband and older daughter have lighter brown, thinner hair. My son has really blond hair that is thickening up. And Lilly's is of course brown and fine and is really growing in more fully. A scripture that often comes to my mind, which is wonderful and comforting is:

"Are not two sparrows sold for a penny? Yet not one of them will fall to the ground outside your Father’s care. And even the very hairs of your head are all numbered. So don’t be afraid; you are worth more than many sparrows." - Matthew 10:29-30

Monday, October 17, 2011

Real food update

I've been continuing to introduce blenderized food to Lilly via her g-tube. She is now up to 3 food meals a day, with breastmilk or water in between. She has tolerated everything very well. I only give her 1 ounce at a time as that is all her tummy can hold. These are the food combinations she is getting:

- yogurt/banana
- spinach/orange juice
- avocado/dark chocolate
- cauliflower
- congee (see below for details)

Lilly is still eating coconut oil by mouth. Other than that though, I'm afraid I haven't been very good about working on mouth feeding with her right now. I've been so focused on the diet itself. But after her heart surgery we hope to really try hard to teach her to eat more by mouth.

Until I read the Homemade Blended Formula Handbook I had never heard of congee. It is a slow cooked porridge considered a staple in many Asian countries. It is supposed to be very easily digested. There are a lot of recipes out there for it, using different grains and spices. Here is how I made it for Lilly: combined 5 cups of water and 1 cup of organic brown rice in the crock pot. I added a pinch of himalayan salt. Then sprinkled in some ginger and cinnamon (both of which have many healthy benefits). Covered and cooked it on low for 8 hours. (Smelled yummy!) It made a lot so I put some in the freezer. With what was left, I blended it in the Vitamix with some breastmilk.

One important thing we've learned about feeding Lilly anything through the bolus - is NEVER lay her down flat for at least 5 minutes. If we do that, or even just jostle her too much, the food or milk comes right back out. In fact, Lilly's in my lap right now, staying propped because I fed her a little while ago. But I've kept her still long enough and she's getting squirmy. So we're off to do some physical therapy and practice sitting. :)

Saturday, October 15, 2011

Lilly goes to the park



This afternoon we went to the park. My 10-year-old has decided that she's at that age where she's getting too old to really enjoy the playground. My 3-year-old has the most fun just running up and down the sidewalk and ramps pretending to be a car. Lilly seemed to just enjoy being outside and someplace new.


We've felt such freedom this fall to actually go out and do things. We really haven't done a lot as a family since Lilly was born. Since she was born she's had 3 major hospitalizations. There have been a couple deaths in the family. Lots of catch up with homeschool. And the weather hasn't been great for Lilly to be out. Too cold in the winter, too much pollen in the spring, and the summer was very very hot. But the weather lately has been perfect so we can go out and enjoy all those fall things outside and not have to worry or avoid them because of exposing Lilly to airborne germs. So this month has been really refreshing to us and much needed.


In the pond behind Lilly today we saw turtles, fish, and one catfish that was as big as Lilly!


"How many are your works, LORD! In wisdom you made them all; the earth is full of your creatures." - Psalm 104:24

Article about Rick Santorum

This is a picture of Lilly, not Bella.


CMWH posted in comments yesterday a link to a good article about Rick Santorum:





Former Senator Santorum has a 3 year old daughter, Bella, with Trisomy 18.



Thanks for the link CMWH - and your ongoing support and prayers!

Friday, October 14, 2011

"Lilly is Sweet"

Today's photo credit goes to my 3 year old son who got a hold of my camera and announced he wanted to take a picture of Lilly napping. I said "go ahead and try" He turned on the camera, aimed, snapped the picture, turned it back off, and handed it to me. Wow.

When I was pregnant with Lilly I didn't have any support within the Trisomy 18 community. I didn't know it existed. I only found the negative stuff online and it was so upsetting I didn't look at it much. But once Lilly showed us that she was planning on staying awhile, I joined SOFT and ordered their handbook. Through that support group I got a call from the author of their care handbook, who lives in a town near me. I was shocked when she said her daughter (who had full Trisomy 18) lived to be almost 20! Then soon after we talked she got me in contact with another new mom, who's little girl, Giuliana, was exactly one month younger than Lilly. Giuliana's mother just started a blog for her. Check out this happy little girl at: http://www.g-giftoflife.blogspot.com/ .

I've been trying to do a lot of cleaning out in the house lately and in going through a stack of papers found a poem that my older daughter wrote about Lilly earlier this year. It is entitled "Lilly is Sweet":

There is a little girl named Lilly;
And she is very cute and funny!
We think she’s very cute!
She holds her toys and talks to us;
And to our family that’s enough!
She is a little blessing;
The best one we could ever be with.
Although she can’t do everything,
We think she’s a cute little thing!
So let’s thank God for sweet little Lilly;
She’s a blessing that’s cute and silly!

Tuesday, October 11, 2011

Lilly visits the zoo

In the past week, I've had quite a number of people ask me what exactly Lilly's upcoming heart surgery means for her. In other words, does it change her short life expectancy. Well honestly, only God knows. But we hope, that by getting the hole in her heart patched, that it will help Lilly to live longer. That she at least won't die of heart failure. That she'll handle sicknesses, like viruses, easier. I have heard that of the 5-10% of children with Trisomy 18 that make it to one year old, about 60% of those children will live to be 5 years old. Now that is an exciting thought! :)

Yesterday was both Lilly's and her brother's first time to visit a zoo. It was a cloudy day - perfect for Lilly's sensitive eyes. I figured we'd have an interesting time as we walked towards the entrance and in front of us was a man - presumably with his family - wearing a skirt! And no not a kilt. It was an "industrial" skirt for "manly men." Ooookay ... I had heard about those in the past but had never actually seen one. Besides that oddity, we saw many animals and did so much walking. The most interesting thing I actually learned was that a rhino's horn is actually made of hair! Here are some pictures of Lilly around the zoo:


Riding a baby elephant (statute):



Taking a lunch break (bolus feed):


Lilly in front of the giraffes (she got a lot of laughs and smiles as people passed us and saw her sunglasses):






Lilly by lily pads:




At the children's playground -Lilly on a giant climbing spider web:




Lilly in front of the carosel (which disappointingly closed just before we got to it):






Lilly riding the tram between "North America" and "Africa":




Lilly was tired enough from all the fun that she slept in past 11:00 this morning.

Saturday, October 8, 2011

Return to the pumpkin patch

Today we went back to the local pumpkin patch for the kids to pick out pumpkins. It was thrilling to take Lilly back with us this year. Last year I had wondered if she would still be with us to do it again. (You can see my post from last year - including a picture of 6 lb. Lilly here.) The Lord has been so generous with continuing to share Lilly with us!

"Now to Him who is able to do exceedingly abundantly above all that we ask or think, according to the power that works in us, to Him be glory in the church by Christ Jesus to all generations, forever and ever. Amen." - Ephesians 3:20-21

Below are a couple pictures from today. (A much bigger Lilly than last year - she's almost 13 lbs. now!)

Lilly sitting amongst the pumpkins, wearing her pumpkin hat:


Super Lilly trying to lift a pumpkin:


Lilly with the pumpkin she picked out:



Lilly sitting on one of the old John Deer tractors that were at the pumpkin patch:



Ready to go home - Lilly got a sticker saying she had visited the pumpkin patch:




In other news from the week, Lilly got her first Synagis shot (for RSV (virus) protection) this past Wednesday. She's supposed to get one a month throughout flu season.


I'm continuing to add new foods to Lilly's blenderized real food diet through her g-tube. I found out that the body apparently doesn't absorb iron well from spinach if you eat spinach by itself. So I got a list of foods that help it absorb better. One thing is citrus foods like oranges. So I mixed orange juice in with her spinach. I also am melting her super healthy dark chocolate and adding that to her avocado. The other new food she had was banana mixed with yogurt. She is taking just under an ounce of food at a time. About 30 minutes before I feed her food, I give her an ounce of water. I read that this helps with digestion. She's now getting two feedings of real food a day. All her other feedings are still breastmilk. This next week I hope to add eggs and cauliflower.

Wednesday, October 5, 2011

We have a heart surgery date!!

We were thrilled to receive a call from Wolfson Children's Hospital (Jacksonville, Florida) today that they have accepted Lilly for heart surgery! (She has a hole in her heart (VSD) and she needs it fixed.) FINALLY! The surgeon at that hospital placed a pulmonary artery band in Lilly's heart about a year ago and we've been working towards this surgery ever since then. Pre-op is set for November 2 and if all looks good then surgery will be the morning of November 3. Average hospital stay for this procedure is about 10 days.

Now it is very important that Lilly stay healthy. No more colds or any sickness, or the surgery will be postponed. Please pray for this!

We are so thankful to God for Him bringing all this about. We will have to travel out-of-state for this surgery. So we are grateful that there are surgeons in this country that are willing to help Trisomy 18 children. There aren't a whole lot! Praise God for Wolfson Hospital and their open-minded surgeons!

I'm so excited about Lilly's surgery! A bit nervous too. But whatever God's plan is for her - we trust Him. He's already surprised us so much with Lilly's life so far and we are exceedingly grateful.

"Trust in the LORD with all your heart and lean not on your own understanding; in all your ways submit to him, and he will make your paths straight." - Proverbs 3:5-6

Lilly got to do some more sightseeing today, right here in our own hometown. We took a homeschool field trip to the town's little museum, old jail, original post office, and old schoolhouse. Lilly managed to stay awake the whole time.

Here is Lilly in the little schoolhouse:


Lilly in the post office by the pot-bellied stove:


Lilly by the mail sorter in the post office:


Lilly sliding with Daddy on the (modern!) playground:


Tuesday, October 4, 2011

Happy 15 months, Lilly!

Lilly turned 15 months old today! Every month older she gets still feels like a milestone. Praise the Lord! (And Happy 14 months Giuliana!)

Yesterday we went on a walking tour of Bath, North Carolina with my mother-in-law. Bath is the oldest incorporated town in North Carolina, established in 1705. The weather was beautiful - sunny and cool. Lilly toured the town in my wrap and slept the first half of our tour. We saw several old houses.

We went the oldest standing church in North Carolina, St. Thomas Episcopal Church, which was built in 1734:


Here is Lilly snoozing inside the church:




Bath is also famous for being a place where Blackbeard the pirate lived for a couple years. Here's Lilly snoozing by a sign about Blackbeard (Joseph Bonner House in the background):


Lilly finally woke up when we walked down by the Pamlico River:



Lilly enjoyed sightseeing and hopes we can go on more adventures soon!