Day 6: Lilly's broken heart

This is my sixth post in a series of seventeen.  17 days of remembering Lilly's 17 months of life as we approach her one year angelversary.

Lilly was born with two holes in her heart.  They did not close on their own as holes can often do.  This is called ventricular septal defect, or VSD. 

In explaining Lilly's heart condition to Hunter, I simply told him that "Lilly's heart was broken."  It needed to be fixed. 

Easier said than done.  To this day, I still can not believe how difficult it is to get most heart surgeons to accept a patient with Trisomy 18.  We live in North Carolina, in an area surrounded by highly respected hospitals.  But no one would accept Lilly as a patient because it is "unethical" to treat a child that was just going to die.  (Meaning since she was going to die, she shouldn't have to be put through the trauma of surgery.  Never mind that that surgery could very well extend her life ....)

Have you read in news stories about people that are forced - by the courts - to accept treatments for life threatening illnesses like cancer?  I have.  How ironic.

Thank God for Wolfson's Children's Hospital in Jacksonville, Florida.  Thank God for their love and acceptance of Lilly.  Thank God for their surgeons and the team there.

When Lilly was 3 month's old, she was too tiny and weak for the complete VSD repair surgery.  So a pulmonary artery band was placed in her heart. 

The band helped Lilly to gain weight and get stronger.  When she was 16 months old, we returned to Wolfson's for Lilly's "broken heart" to finally be fixed.  Surgery went smoothly, once again, and she healed up quickly, just as good, if not faster, than a "normal" child.

Lilly's heart was fixed and functioning normally. 

"He heals the brokenhearted and binds up their wounds." - Psalm 147:3

Day 5: Siblings

This is my fifth post in a series of seventeen.  17 days of remembering Lilly's 17 months of life as we approach her one year angelversary.

In spite of how Lilly and her circumstances could make things difficult for our family at times, her siblings absolutely adored her and were so proud of her.  Both Tabby and Hunter have things that belonged to her and treasure them.  They talk about her every day.  They both look forward to seeing her in heaven again one day. 

During her life, it was obvious Lilly loved them both back.

Solomon will never meet his big sister Lilly in this life.  But we tell him all about her.  Lilly loves him already.  Look in the bottom right of this picture of Solomon visiting Lilly's grave. 

Did you see the rainbow?!!  A "hello" from Lilly to her "rainbow baby" brother!

"Love one another with brotherly love, in honor giving preference to one another;" - Romans 12:10

Day 4: Now I Lay Me Down To Sleep

This is my fourth post in a series of seventeen.  17 days of remembering Lilly's 17 months of life as we approach her one year angelversary.

Four days after Lilly was born, we had a photographer from Now I Lay Me Down To Sleep come to our house.   

NILMDTS is a worldwide network of volunteers who photograph infants that are stillborn or not expected to live.

Since we left the hospital so fast with Lilly, Steve Rubin came to our home to take the pictures.  Photos are done in black and white and the service is completely free.  We also got a DVD with the pictures on it along with a song.  It always makes me cry to watch it.

 I love the NILMDTS organization and what they are doing.

We are so blessed to live in a time where there are photos.  Remembrance photography.  I can not imagine not having photographs of all my loved ones.

Steve Rubin came back to photograph our family with Lilly at her life milestones.  He came to our house again today - to photograph our new phase of life with Solomon.  LillyBear stood in for Lilly in the siblings photo shots and our family shots.

"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." - Jeremiah 29:11

Day 3: Lilly's birth

This is my third post in a series of seventeen.  17 days of remembering Lilly's 17 months of life as we approach her one year angelversary.

Lilly was due June 17, 2010.  She decided she loved the colors red white and blue and loved fireworks, so she held off until the 4th of July.  My labor and delivery was super fast - only one hour and 40 minutes total.  Lilly was born naturally and breech.  Her coloring was not good and her breathing very shallow.  She was laid on my chest and we were covered with warm blankets and there was a hush in the room.  With tears in her eyes, our midwife said we were to "keep praying and see what happened."

About an hour later Lilly let out a big cry.  An excitement buzzed in the room.  Lilly's color was better and she had perked up.  Soon Lilly was taken and cleaned up and measured and all.  Lilly was 18 inches long and 5 lbs. 4 oz.:

She was bundled up and given back to us for kisses:

A couple hours later, we learned that we were being released from the hospital so that Lilly's siblings would have the chance to meet her before she died.  Apparently this was "highly unsual" for their procedure, so we were very grateful.

My prayer had been that Lilly would be born alive and that I would be able to take her home.  God granted my wish.  We took her home:

But not before she had be given the nickname "Little Firecracker."

". . . your Father who is in heaven give[s] good things to those who ask Him!" - Matthew 7:11

Day 2: Lilly's namesakes

This is my second post in a series of seventeen.  17 days of remembering Lilly's 17 months of life as we approach her one year angelversary.

Once we knew from the second ultrasound that Lilly was a girl, we gave her her name:  "Lillian Eva."  "Lillian" was after her great-great-grandmother on my side of the family (photo in below left of the scrapbook page) and "Eva" after her great-grandmother (below right) on Frank's side.

The Bible was Lillians's and cranberry colored glasses were Eva's.

"Lillian Eva" is such a beautiful name to me.  Yet soon after she was born, we seemed to mainly be calling her "Lilly."  That made me think of beautiful white Easter lilies.  :)

“Rise in the presence of the aged, show respect for the elderly and revere your God. I am the Lord.” - Leviticus 19:32

Day 1: Learning about Lilly

This is my first post in a series of seventeen.  17 days of remembering Lilly's 17 months of life as we approach her one year angelversary.

My first ultrasound when I was pregnant with Lilly was on January 11, 2010.  We did not find out if she were a boy or girl - she was too abnormally small for the technician to tell.  We found out that instead she had several "soft markers" of a genetic disorder we had never heard of.  Trisomy 18.

On March 18, 2010, I had a second ultrasound.  This time we learned that our baby was a girl.  That the Trisomy 18 "markers" were still there.  And that she had a heart problem.

There were no problems in our hearts in loving Lilly dearly already. 

"Before I formed you in the womb I knew you, before you were born I set you apart; . . ." - Jeremiah 1:5

LillyBear's house tour - part 2

As LillyBear promised Tabby and Hunter, here are their Lilly things in their rooms.

Tabby has Lilly's quilt that she died on on her bed.  Lilly pictures over her bed:

Here is Tabby's memorial shelf:

Hunter's framed photos (which he selected himself) and the collages he made:

Both children also have a couple of Lilly's stuffed animals in their rooms.

In the first picture of Hunter's room, notice the round blue "bunny clock" on his nightstand.  I often tell people what a wonderful clock it is.  I set the time on it for when Hunter is allowed to get up in the morning.  When that time hits, the light behind the picture of the bunny sleeping will switch to the bunny walking.  Amazingly, Hunter has always obeyed bunny clock!  (except once I think and I sent him back to bed.)  He is an early riser, so it has just been a big help to me.  (You can get this clock here - they also have a pink cow version for girls.)  When Hunter sleeps in and bunny clock is awake before him, he gets so excited and tells me "how kind" bunny clock is being.  Other days, I will hear him pleading "oh please bunny clock - please wake up! Wake up NOW!!"

One more tip for the day - a baby tip.  I had to use this trick on Solomon this afternoon.  Tabby had been playing with him and then had him posed and playing so she could take pictures of him:

He was completely exhausted by the end and started crying.  Really crying.  Hysterical crying.  My usual bouncing-jiggling-patting-humming trick only made him cry harder instead of soothing him as usual.  So we went and stood by the dustbuster and I turned it on.  Within seconds Solomon had stopped crying.  His body went limp and he was very quiet in my arms for several minutes and then fell asleep.  Ha!  This trick used to have the same effect on Hunter when he was a baby.  Dustbuster, vacuum, hairdryer - a loud steady noise - makes them quiet and calm.  Definitely a blessing when you need it! 

"In peace I will both lie down and sleep, for You, Lord, alone make me dwell in safety and confident trust." - Psalm 4:8