caption - title

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, July 29, 2012

Rainbow gifts

Our Rainbow Baby received the cutest gift in the mail the other day.  A Lilly colored hat!  K., the woman that made LillyBear, sent it to me as a surprise.  I was so touched and am looking forward to getting some really cute pictures of our Rainbow Baby boy in the hat.  K. asked if T. and H. would like matching hats and they both replied "YES!" immediately.

This is the kind of hat I was envisioning for Rainbow Baby to get some of those really cute sleeping baby pictures in.  Now he just needs a crocheted diaper cover to match.  :)

Rainbow Baby and I had a checkup this past Friday.  Everything seems good.  T. thought his heartbeat sounded slower than Lilly's had, and it was true.  Lilly's was usually about 160 bpm in the womb.  This boy's is about 140 bpm.  The midwife told Tabby that it is said girls tend to have faster heartbeats than boys.  She hasn't found that to always be true, but likes to keep a mental tally of it.

The baby is in a head down position which I'm relieved about.  (He had been breech at one point.)  It made me think of something funny that Lilly would do after birth.  She was a breech baby and for the first few weeks, her legs would suddenly fly straight up in the air, at seemingly random times.  My midwife called it "breech legs."

My husband brought home a special gift from "Anonymous" (a thoughtful co-worker of his that prefers to give gifts but not her name) for "Lilly's baby brother."  (I just think that's so cute - "Lilly's baby brother!")  It was a rainbow colored blanket.  There was also a baggie with rainbow colored goodies for the rest of us.  Bracelets for T. and I, a ball for H., and bookmarks for my husband.  Thank you Anonymous!  You are so kind and generous and we are really enjoying the gifts.  :)  I just feel weird I can't send you a proper thank you note!

Names names names.  People keep asking what Rainbow Baby's name will be.  I don't know.  Still can't really decide.  The rest of the family likes a couple names.  I don't dislike them, but just can't commit.  I'm not sure why.  I am not as fearful as I have been about this baby dying.  And I am looking forward to meeting him.  But ...

"I will bless the LORD at all times; His praise shall continually be in my mouth." - Psalm 34:1

Saturday, July 28, 2012

Encouraging new T-18/T-13 medical journal article

"[Jesus] said to them, 'Whoever receives this child in My name receives Me, and whoever receives Me receives Him who sent Me; for the one who is least among all of you, this is the one who is great.'” - Luke 9:48

Earlier this week, the Trisomy 18 and 13 world was blessed by a positive medical journal article.  It was co-written by a Barbara Farlow, the mother of a baby girl who lived with Trisomy 13.

The University of Montreal issued a news release about the article (read it here) and I found it encouraging from the start:

"Children with trisomy 13 or 18, who are for the most part severely disabled and have a very short life expectancy, and their families lead a life that is happy and rewarding overall, contrary to the usually gloomy predictions made by the medical community at the time of diagnosis, according to a study of parents who are members of support groups published today in Pediatrics."

Lilly's above picture is a good representation of that.  I took her "famous smiling picture" as we waited in the hospital for a sleep study for her.  She was such a cheerful and contented little girl.  (She usually only seemed annoyed when she was hospitalized - and who could blame her for that?)  Lilly's above picture is part of a collage that Barbara made, of pictures of children from the Trisomy 18 and 13 community.  (Lilly's picture is in the 4th row down, in the upper right area.)

The abstract of the Journal article is here and the pdf of the article is here (a subscription is required to access the article itself). 

Keith Barrington, a neonatologist, clinical researcher, and chief of service at Sainte Justine University Health Center in Montréal wrote an excellent summary about the study.

As the mamma of a blessing that lived 17 months with Trisomy 18, I find these articles so encouraging.  I wish there was some way to reach EVERYONE in the medical community at once with this information.  I really hope and pray that I will have a chance to speak to some groups of doctors and or medical students at some point about this.  But in the meantime, I will continue to share Lilly's story with everyone, one person at a time.

Thursday, July 26, 2012

Lilly's Trisomy 18 physical features - Part 2

Photo credit - first 3 photos - Steve RubinTaken very shortly after Lilly reached the milestone of one year old

Hands down, my most popular blog post has consistently been "Lilly's Trisomy 18 physical features."  It occurred to me recently that I wrote that post when Lilly was only 2 months old and I still knew so little about Trisomy 18.  So I thought I would write a part two of the post, sharing a few more things that I have learned that children with Trisomy 18 tend to have in common.

In my first post, I shared that Lilly's small head size and tiny mouth and jaw were normal in the T-18 world.  Another interesting and very very common facial feature was this shape and "style" of her eyebrows and super long eyelashes!  These features make so many T-18 children look like "cousins."  Some children even have a "unibrow" and some have hair that lightly grows up their foreheads - leading some parents to shave it off!  (No we never needed to shave Lilly.)

In the above pictures you'll also notice Lilly's "crazy hair."  Quite a number of T-18 children just have some crazy cowlicks.  I find it really endearing.  :)  Lilly's was like a mohawk.  She continued to have the "swirls" on the back of her head.

Children with T-18 tend to have eyes that are very sensitive to the sun.  We tried to always put sunglasses on Lilly when we took her out, and if it was really sunny, a hat too.  We had two strollers and always used the canopy top on them to further cut down on sun and glare.

Weak muscle tone is another commonality.  Lilly had both physical and occupational therapies once each week to help with this.  She LOVED these sessions and was a hard worker! Lilly was never able to sit on her own for more than a minute, though she was getting a lot better at it when she passed away.  She never held her head up for long either.  So we always were careful to support her head, just like you would a newborn.

Lilly preferred to hold her arms like this next picture shows.  She also tended to keep her hands clenched.  She was able to open all her fingers, but when she relaxed, they went back to the clenched position.  (Though not a hard clench like when she was born.)  I've been told that even the older children - those in their teens - would still go back to a clenched position when they were really relaxed or tired.

To help train Lilly's hands, we got her hand splints, to hold her hands open.  She usually only wore them at night while she slept.

In the above picture, notice the oxygen cannula on Lilly.  Because she had a heart defect and obstructive apnea, sleep studies showed she needed oxygen while she slept.  There are many T-18 children that need oxygen at night, or even all day.  Also children that have to have a trach for breathing is not too uncommon. 

Lilly had two holes in her heart, known as a Ventricular septal defect, or VSD.  The majority of children with T-18 have some kind of heart defect.  Lilly needed it repaired pretty quickly but she was so small and weak that doctors were afraid she would not survive the regular heart surgery.  So she had surgery to have a pulmonary artery band put in first.  (Unfortunately I wasn't good at "labels" for my posts when I first started blogging.  If you want to read more about this, go to September and October posts of 2010.)  Lilly finally was able to get the regular heart surgery, to patch the holes, in November 2011.  (Go to label "heart surgery" to read about that.)  Here is Lilly sleeping peacefully after heart surgery.  (The scar healed remarkably well.)

When Lilly was hospitalized the first time, while waiting for the pulmonary artery band surgery, she had an Nasogastric feeding tube placed.  She was able to bottlefeed, but - because of her heart - she just didn't have the stamina to feed long enough at a time.  This is the "NG" tube, which was hooked to a Kangaroo Joey feeding pump. 

If you look close at the above picture, you can see a little split in Lilly's upper lip.  Regular cleft lips are not uncommon for T-18 children.  

Lilly had the NG tube and was on continuous feeding, via the pump, for almost 8 months.  We tried a lot to get her to drink a bottle again.  But she was not interested anymore after the NG tube was placed.  I guess because it was uncomfortable to swallow.  So we finally had a g-tube placed for feeding.

That made Lilly SOOOOOO happy.  She HATED the NG tube!

Feeding Lilly was an adventure at times with the G-tube.  I ended up doing a blenderized diet with her, which you can read about here

Children with T-18 are small.  Lilly was 5 lbs. 4 oz. at birth and 18 inches long.  I thought that was tiny - but I have learned, she was actually a good size.

These children grow and gain weight slowly.  When Lilly passed away, 17 months later, she was at 13 lbs. and about 26 inches long.

One other BIGGIE, that I need to mention, is that children with Trisomy 18 have very weak immune systems.  Lilly had numerous colds, was on several rounds of antibiotics, and was hospitalized twice for for viruses.  We did a number of things to boost her immune system.  You can read about some in this post and this post

Finally, I have to say, that Lilly was the most contented little thing I've ever known.  Many other parents of children with Trisomy 18 have told me the same thing about their children.  They are happy and loving.  They fight hard to live.  And they bless their families in incredible ways.  They change our lives for the better.  Thank you God for Lilly!
"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 . . . ." - Psalm 139:13-14

Saturday, July 21, 2012

T's writing camp

Photos from June 2011

This past week, T. went to a writing camp each morning.  She really enjoyed it.  Her class learned about her little sister Lilly pretty quickly.  T. was happy to show everyone the pictures of Lilly that she carries in her "many pocket purse" made by little angel Hannah's sister

T. found out that two siblings in her class had a younger brother whose twin had died after living only two hours.  And, her teacher had a little child that died young.  There seems to be an instant bonding of sorts when people learn those things about each other.

Lilly's teacher asked me about the dates that Lilly was alive.  She then said that in a class she had taught at her church, there were a number of students that attended the school that my husband works at.  She said that those students had requested prayers for Lilly every week.  It always touches my heart to hear stories like that.

One of the assignments T. had in class was to write a list of emotions and what colors go with it.  When the class discussed this topic, a girl asked what color "death" was.  T. quickly answered "white, blue, and purple."  The girl responded "How do you know?"  T. said "Because I saw my little sister dead."  I've thought of that a number of times this week and it just makes my heart so sad for T.  And well, all of us.  Finding your child dead is just so horrible.  In spite of some confusion in my brain of the night Lilly died, some things, like what she looked like are burned into my mind.  And as cold as her body was in death, I treasure my final memories of holding her close, and feeling her stick up hear on my cheek. 

When my thoughts do stray to topics like this, I try my best to turn my thoughts to good things. 

"We demolish arguments and every pretension that sets itself up against the knowledge of God, and we take captive every thought to make it obedient to Christ." - 2 Corinthians 10:5

I think of Lilly being perfect in heaven, thanks to her death, in being released from her broken earthly body.  And to remember just how gently the Lord took her home and how we could not have chosen better circumstances for her.  And how grateful we were to have Lilly for 529 days.  Etc.

Yesterday T. and the other children in class each read one of their pieces in front of the class and their parents.  T. choose a poem she wrote about Lilly:

Lilly is Sweet - by T.J.H., July 2012

Lilly is sweet, all day, all night,
and I love her with all my might!

Lilly is safe, tucked away in Heaven,
Sweeter than candy; snug as a bug in a rug.
Sometimes I miss her, and want to give her a hug.

She loved me; and she loved her special toys,
To her almost all things were joys.

She is my angelic sister,
And she is my Little Firecracker.

She was sweet from the start,
And I know in my heart,
There is nobody sweeter than Lilly.

Her sweet face I could never replace,
As long as my life goes on.

Her chubby hands on her little round cheek,
If there's ever a beautiful picture I seek,
It will be one of Lilly.

And when we meet in eternity,
She and I will forever be together.

Tuesday, July 17, 2012

Beautiful butterflies

The Lily Flower Butterfly

The above photo is a "Flower Faery Butterfly" by Carly Marie Dudley, taken on Christian's Beach.  How could I resist a photo with the beautiful lily flower, for our Lilly?  :)  It's just so pretty and peaceful.  This photo will look perfect enlarged and hanging next to Lilly's crystal butterfly photo, also by Carly

Butterflies surround me,
Colored pink with streaks of gold,
And all the other kids here,
Say that we'll never grow old.

So when you're feeling down,
And you miss me more than ever,
Remember that I'm happy,
And that I'll be with you forever.

     - Mary Hayden-Evans

The beauty of heaven in the above poem is also seen in this scripture:

"The twelve gates were twelve pearls, each gate made of a single pearl. The great street of the city was of gold, as pure as transparent glass. . . . The city does not need the sun or the moon to shine on it, for the glory of God gives it light, and the Lamb is its lamp. On no day will its gates ever be shut, for there will be no night there."  - Revelation 21:21, 23, 25

Sunday, July 15, 2012

Grow in wisdom

We were thrilled to pick up my very special birthday gift at the frame shop yesterday.  I had missed not having it in the house for the past few weeks!  Here it is, simply beautiful:

Here is a close up of the beautiful detailing on the frame:

I have declared this Lilly and Jesus picture is an official family heirloom.  And probably the second most expensive thing we own!  I told everyone that if the house ever catches fire to try and save this picture!

On a different topic, I have long admired a way a friend keeps record of her children's physical growth.  So I decided to copy her idea.  My husband painted an extra board white we had for me.  At the top of the board, I wrote in black marker:  "Grow in wisdom" which is a reference to this scripture:

"And Jesus grew in wisdom and stature, and in favor with God and men." - Luke 2:52

Then I took a tape measure and marker and marked off each inch, starting at 18 inches for our smallest baby (Lilly). 


I had all three of our children's height records from birth, and wrote those on the board with pen.  (A different color for each child.)

Now I have a permanent height record that can be easily moved to any house we move to.  :)

I have to admit I felt rather sad when finishing this board though.  It was fun measuring T. and H. today and marking their heights.  But sad to know that I am forever finished marking Lilly's height.  There is just something about it that doesn't seem right.

Guess I better go look at my Lilly and Jesus picture for comfort, reminding myself that Lilly is now happy beyond measure and is perfect.

Thursday, July 12, 2012

Beautiful books

Last month, I received a beautiful book in the mail from Caleb's mom, called Far Flutterby (by Karen Kingsbury).  It is the story of a plain little caterpillar named Cody who lives in a plain land called Better-than-Brown.  He finds life is boring and yearns for something better, with more meaning. 

Then he learns of a wonderful place called Far Flutterby, and that God has an amazing plan for him.  Cody carries on through hard times, filled with this hope, until it's finally his time to transform into a beautiful butterfly and go to that beautiful land.

2nd picture:  Inside the book I taped in a picture of Caleb and his mommy.  Caleb lived from 3/20/09 - 8/29/11 with full Trisomy 18.  H. likes to tell Caleb "hello" whenever he sees his picture.  Then he wonders if Caleb lives near Lilly in heaven.

The message of Far Flutterby is wonderful and comforting.  I often end up with tears in my eyes thinking of Lilly, and Caleb, and the other children that have gone on to "Far Flutterby."  My son H. loves hearing this book over and over.  And we are happy to read it to him.  I think it is a wonderful gift book for anyone that has lost a child, or any loved one.

Another book that I really like, even though it always makes me cry (especially because of now being pregnant with our Rainbow Baby), is The Angel with the Golden Glow by Elissa Al-Chokhachy.  This book is based on a true story of a family who's first child was born with a "rare genetic neurological disorder."  It is the story of an angel being sent from heaven to be born into a family.  The family knows that baby won't be with them long and were sad.  The Angel with the Golden Glow doesn't understand why - he knows he was specially chosen and created special.  So he shined his "halo" brightly to cheer his parents up and fill them with love.  Finally he is gently taken back to heaven.  The family later receives comfort in the form of a new baby.  The new angel that had been created for them was called "The Angel with the Tender Heart."  This too is a wonderful gift book, though probably best for "Rainbow families."

Lilly's memorial garden has a couple of new beautiful blooms this week:

My aunt sent the craziest pair of flamingos I have ever seen, in memory of Lilly's birthday:

T. and I tend to name things after the people that gave them to us.  We're debating between the names of my aunt and uncle.  Or, after the large dog statutes flanking both sides of their porch:  Scarlett and Rhett. 

Finally here is a digital scrapbook page that T. made, featuring Lilly with her "boxing gloves."  (The "boxing gloves" were little hand splints to train her hands to open better.  It is very common for children with Trisomy 18 to clench their hands.  You can see my post about when Lilly first got her splints here.)

Don't forget - you can buy the My Memories Suite digitial software program and get $10 off by using the discount code that I have at the top right column of this blog. 

Tuesday, July 10, 2012

If only people knew ...

T. made a beautiful present for me.  She got a doll and then sewed an angel outfit, complete with wings, and gave it to me.  It turned out beautiful.  The perfect place for it was next to my favorite picture of Lilly dressed like an angel.  What a beautiful little girl!  :)

"See that you do not despise one of these little ones, for I say to you that their angels in heaven always look upon the face of my heavenly Father." - Matthew 18:10

Here is an close up of the angel doll:

Earlier today I read yesterday's post on "The Other Lily's" blog.  It made me cry.  Lily's mother wrote about someone online that made nasty comments about an article on a boy with Trisomy 18. 

(I googled the original article and found it here.)  This person posted on this forum.  She pulled out quotes from the news article and gave her comments on T-18 children, whom she called "defective loaves."  I skimmed the comments that that person got in response to her post.  All seemed to agree that children with Trisomy 18 are a drain on taxpayers, completely unworthwhile as people, and the only kind thing their parents could have done was to have aborted them.

Honestly I just shake my head at forums like this person posted on.  Just as they would think I am a monster for allowing Lilly to live, I think they are godless and sadly ignorant.  Something like this is not really worth my time.  Yet I couldn't help but think of these comments today and wonder, what could be done to change their minds?  To help them see the real treasure that "a Trsiomy-18 Tard" is? 

Probably nothing, unless they could meet some of these children in person.  The Other Lily's mother invited the derogatory commenter to her home to meet her child and see how that child lived.  Perhaps that would change that person's heart. 

Sadly though, this is the state of America in general.  And with the increasing lack of belief in God, the lowering of standards and morals, and the new health care laws (i.e. health care rationing and it's corresponding loss of choice and freedom) I don't see anything improving.

Last year someone left a negative comment on my Lilly blog where, among other things, they accused my husband and I of "condemning Lilly to life."  (You can see that comment in full and read my response here.)  I thought of that comment today, after reading The Other Lily's blog post.  I also thought of several people, who after our Lilly died, expressed that they were surprised that we missed Lilly so terribly.  (Because she must have been a burden.) 

I think that as humans, it is often hard for us to really understand much unless we ourselves experience whatever it is.  But maybe, just maybe, through this blog some readers will come to understand the true blessing of a child like Lilly is.  Lilly is in heaven now, but her life continues to bless us in more ways than we ever thought possible.

And for anyone who still thinks these precious Trisomy 18 children can not interact and are just a vegetable, I share a link to a post from last November of one of my favorite Lilly videos.  The one where Lilly laughs and laughs in response to her caterpillar Hank.  It makes me smile just to think about.

Sunday, July 8, 2012

Christmas in July

"Two are better than one, because they have a good return for their labor:  If either of them falls down, one can help the other up.  But pity anyone who falls and has no one to help them up." - Ecclesiastes 4:9-10

Friends are amazing.  We have been so touched by friends and family, both the ones that we know in person and those online.  We received such an outpouring of e-mails, phone calls, letters, gifts, prayers, and hugs last week, as we celebrated Lilly's 2nd birthday without her in our arms.  She of course had the ultimate party in heaven!  Through the tears and smiles of remembering Lilly, we were certainly held up by friends and family.

I wanted to post pictures of all the gifts here, mainly as a journal for my family.  But I thought my readers might enjoy seeing them too.

First is the gift I bought Lilly.  (Last year I bought her this one, and thought I'd add to the collection each year.  We buy our other children birthday gifts, it only seems right to with Lilly too.) 

From Ann Barnes, the author of The Care of the Infant and Child with Trisomy 18 or Trisomy 13, (the most helpful Trisomy 18 book out there!) we received this wonderful frame with hooks (perfect for hanging some of Lilly's b'day dresses on):

The Barnes family had a daughter, Megan, that lived almost 20 years with Trisomy 18.  How amazing is that??!!  (Today, July 8, is Megan's birthday.  I wonder if she's having a party in heaven!)

From C.N-R, the mom of angel Darian, a baby girl that lived one day with Trisomy 18, we received these beautiful pictures and the card that is in the pictures:

C. took the photos of the Lilly card she made on what she had dubbed "Darian's Beach."  It is in Canada and certainly looks like an amazingly beautiful place!

From C.C., mama of angel Jordan, a baby girl that lived three days with Trisomy 18, we received a sweet book entitled To Let You Know I Care and an angel ornament:

Look at Jordan's precious tiny footprints on the front of the card!  C. wrote that an older woman in her community made the angel to share with another angel mom.  C. added the "Lilly colored" ribbon.

From my friend H.B., H. received a "Lilly colored" necktie (his first tie and he is SO excited about it) and T. a red hairbow with a flag on it.  (T. always has a hairbow or flower in her hair.)  I received the doily:

H. wrote in a letter that her great-grandmother made the doily.  It's not easy to see in the picture, but wow - what amazing work she did!  H. said she was the wife of a railroad man and farmer and a faithful and godly woman.  And that she had 8 children.  One son died of pneumonia at about a year old.  Like Lilly, he died at home in his sleep.

From A.S. we received the most remarkable Christmas stockings I have ever seen:

A's friend hand made these.  Every stitch, bead and sequince was hand-sewn.  It takes about 40 hours to do one stocking!  Wow!  A. wrote that all the stockings, except my husband's, were finished when Lilly passed away last December.  She couldn't bring herself to send them at that time though, but decided that now was the right time.  A. has even already had a stocking for our Rainbow Baby made, and all that is left to do is to add his name to it, when he is born.  I love Holly Hobbie and A. knew that.  Look at this close-up of Lilly's beautiful stocking:

From J.C., the mom of Julia, a little girl that lived for a bit over a year with Trisomy 18 (and who went to heaven the day after Lilly), we received "lilly colored" hand towels, a b'day flag, and an adorable card that J. made:

My friend K.L. dropped off a gift box with the most amazing paper lilies on it. Inside was a beautiful ruby (the July birthstone) beaded angel:

My brother P. and his wife K. had these beautiful flowers sitting on our kitchen counter when we got back from our trip Thursday.  The lilies smell sooooo good!

My mom left a gift "from Lilly" to us, a crystal angel ornament for Lilly's tree and a Willow Tree figurine:

H.A. and her family send a tree!  A European Cypress tree:

It's way to hot to plant the tree, so we will enjoy it inside until fall at least. 

The L. family, that lives very close to us, thoughtfully sent both T. and H. a book.  For T. was two books in one:  Time at the Top and All in Good Time, books which M.L. said she enjoyed as a child.  H. was excited about the Diggers and Dumpers sticker book.  Oh yeah - heavy equipment - he loves it!

From Emily's big sisters S. and L. (Emily is 6 years old with Trisomy 18!) we received ornaments for Lilly's memorial tree.  Both girls made a wooden ornament.  S. took one of her own bears and made clothes for it.  I have it sitting under the tree.

Finally, I appreciate the mom's that mentioned Lilly on their blogs last week.  (These are all mom's of children with Trisomy 18.  Two are still living.)

Aaron's blog:
"The Other Lily's" blog:

Julia's blog:     (Check out little angel Julia in her red white and blue bathing suit!)

Thank you EVERYONE for your prayers and for caring.  You inspire us to do better at reaching out to others.