Chris' tribute to Juliet

Below is the eulogy that Chris gave on Saturday. The strength that he had to stand in front of almost 300 people and speak of his love for Juliet was simply amazing. His words were perfect and pure. I am proud to have such an inspiring husband but heartbroken to see the pain in his eyes.

***********************************

Thank you all for coming to celebrate the life of my youngest daughter.

Being a father is one of the most special things a man can aspire to be. My experience is three-fold; each the same, but different. My girls have the same facial expressions, the same nose, and the signature cheeks. Were such pictures available, it might be tough to tell the difference between the three if their earliest pictures were all mixed together, and even if some pictures of Jessica from her earliest days were mixed in. I thank God for this blessing because it means I should never struggle to see Juliet – her cheeks, her eyes, her nose, her expressions…all running around in my house.

Of my girls, Juliet is the fighter. Her father is competitive in the sort of “I can beat you” mold. But Juliet is more like her mother in the “you can’t beat me” mold. I will always wonder where in life her quiet, but unyielding courage would have taken her. Even though we never took her home, I miss her already there – hearing two sets of footsteps coming scurrying by, I think it will be a long time before I don’t imagine a third. I know she would have provided great balance among her sisters – too tough to be pushed away, she would have forced her way into their tightly knit circles where she would have thrived. I like to believe she would have a wild streak. I often joked with Jess about how she would want to wear bikinis to show off all of her scars when she was old enough, confident that she could readily dispel, and by force if necessary, any reaction that did not meet her approval. She would have been one who had something to say, and maybe this is why she joined us ahead of schedule in July while we were on vacation instead of waiting until October when she was expected.

Juliet and I had a great relationship. She understood very quickly what it meant to be my daughter. I would talk and she would listen, and then not do what I asked. Early on, I told her about Spain winning the World Cup. I read her books, told her stories, and sang her songs – sometimes even Man United’s supporter songs. She would have hated City. But mostly I told her about her sisters and her mom, and how much fun she’d have when she got home. Juliet’s contributions were made almost exclusively through facial expressions and hand-squeezes, and even the occasional smile. My favorite part was simply being able to hold her gaze.

It is not my intention to tell a sad story. And while it is true that I am sad as I tell it, I am not sure that Juliet’s story is a sad one. So I ask “How is courage measured?” Is courage 1 foot 4 inches tall and weighing just over 7 pounds? There is certainly a sad story here about a brave little girl who fought like hell and did not make it home. But to leave with that would be to miss her true character.

Over the course of her remarkable life, I’ve heard many people – some very close and some whom I have hardly met – remark of Juliet’s strength and courage. This is quite a character for a 6 month old child to have built, and all the more so because she never moved beyond 2 feet of her hospital bed or for the most part uttered more than a peep.

It would be too easy to say that she simply lasted 186 days. The truth is, given her challenges, she could have only lasted 186 minutes. But that would not have been enough time to do what she came to do, to say what she came to say. Some might say how could a child that young and that fragile even know that she should fight? And perhaps that is the beauty of it – she just did. That is where we see the courage and that is what we were meant to see. That was her purpose. How wonderful that God chose to send us this message of courage in the shape of a seemingly delicate baby girl with a name of “Grace.”

It is through her inspiration that you carry and share this story. So her story is in some small part your story about courage. And that is a pretty cool impact for a baby girl to have. It makes me very proud to be her dad. My uncle had a neat way of putting it when he said that it seems like she did so much during her life that she may have died of old age.

As you know, Juliet has two sisters. Their responsibility will be more complex, a greater challenge than telling a story. Addison and Mackenzie - Juliet demonstrated courage every day. Her bravery helped her fight for 186 days against a body that seemed to fail her at every opportunity. For much of that time, she saw you – your pictures, your faces constantly positioned within her line of sight. I think she fought so hard because she desperately wanted to be a part of that love.

Your little sister built a legacy of strength, courage, and love. I ask you to carry that legacy. You must BE the story. I want you to live your lives drawing on Juliet’s strength, courage, and love as you demonstrate your own. I want you to be brave and have the confidence of growing up like Juliet would have grown up so that as she looks down she gets to live her life through the two of you. Keep your little sister close to your heart like an angel and ask her for help as you face the challenges you’ll certainly have in life. Juliet was with us in body ever so briefly, but for you and others who can continue to be inspired, her spirit can stay with us forever.

Readings from Juliet's Memorial Service

This morning I asked Juliet to send me a little of her strength and courage to get me through the day. For once, she did as I asked and got me through the memorial service and reception following. It was so touching to see the number of people that crowded in the chapel for the standing-room only service. There were at least 275 people who came to show their love for Juliet and our family. Thanks to each of you who came to give us hugs, share your words of sorrow, and show your respect to Juliet. Special thanks to Rev. Sharon, Adam, Shannan, and Shannon who spoke so beautifully about Juliet and gave the readings that meant so much. It was a beautiful ceremony for a beautiful little girl.

For those of you who were unable to make it to today's service, here are the three readings that were presented. I am trying to post the slide show and Chris' reading, as well - but that will be in a separate post.

***********************************

an adaptation from John 14 - read by Adam Pequignot (Juliet's uncle and godfather)

Let not your hearts be troubled;
believe in God,
believe also in me.
In my Father's house are many rooms;
if it were not so,
would I have told you that I go to prepare a place for you?
And when I go and prepare a place for you,
I will come again and take you to myself,
that where I am you may be also.
I will not leave you desolate;
I will come to you.

Yet a little while, and the world will see me no more,
but you will see me;
because I live, you will live also.
These things I have spoken to you,
while I am still with you.
But the Counselor, the Holy Spirit,
whom the Father will send in my name,
will teach you all things,
and bring to your remembrance all that I have said to you.
Peace I leave with you;
not as the world gives do I give to you.
Let not your hearts be troubled,
neither let them be afraid.

*************************************

A brief history of Juliet Grace by the numbers - read by Shannan Hoelle (Juliet's godmother)

25 minutes by helicopter to Norfolk from the Outer Banks

30 minutes after liftoff Juliet Grace Smith was born

1 lb 14 oz and 13 inches at birth

4 of 7 babies named “Smith” including Juliet in CHKD NICU pod D (and no, it was not done alphabetically)

100 percent of Juliet’s arm around which daddy could slide his wedding band in first days of life

2,800 miles driven collectively by mom and dad between Norfolk and Arlington

40 minutes sister Mackenzie spent crying in daddy’s car after leaving mommy in Norfolk

3 am marked daddy’s departure from Norfolk to get to Reston by 6 on Monday mornings for work

2 helicopter rides

3 intensive care units

2 very tiny titanium heart clips

5 chest tubes

3 different belly button shapes (as re-figured following each abdominal surgery)

16 Arlington Strikers who said “Run for yourself, Run for your mates, and Run for Juliet Grace”

8 attending physicians, 5 nurse practitioners, and 9 primary nurses

28 6^th graders at St. Teresa’s in Prince William County who kept her in their prayers

1,500 oz of frozen breast milk

7 freezers throughout Arlington that were used to store that milk

3 phone calls in the middle of the night

130 x-rays taken

15 different antibiotics administered

150 times her father asked “How much did she pee?”

17 times she faced the surgeon’s scalpel

31 centimeters of small intestine removed

14 times Addison sang “Daisy, Daisy” by her bedside

9 over-stuffed three-inch binders of medical records

7 lb 1 oz on her 6 month birthday

97 posts to julietgracesmith.blogspot.com

As of this morning, 51, 039 views to the blog…from 10 different countries

186 days on earth

1 special little girl

Countless people inspired by her life

*******************************************

read by Shannon Wells - representing Juliet's nurses

"I’m only a small child, not much do I know.
God holds onto my hand as I look down below.
I’m here with the Father in the most beautiful place
yet I can’t feel much joy when I see your sad face.

...Your heart has been broken, I can see from up here
as you struggle along and you wipe every tear.
If I only had words I could send you today
that would tell you I’m home and I’m really okay.

Heaven is beautiful with sparkles and white wings,
and the angels are teaching me so many things.
I’ll grow and mature in this Heavenly land
while holding on tightly to my Father’s soft hand.

Then one day you’ll join me in this home in the skies.
Our joy will be full with no more goodbye’s.
So don’t grieve for me now but find peace in your soul,
and know God has finally made your little one whole.

Now, even if you can’t seem to understand why,
please know in your heart that our love didn’t die.
He tells me that just for a time we must wait
and then I can meet you at Heaven’s front gate!"

A memorial service for Juliet Grace will be held at 11:00am on Saturday, January 15, 2011. We welcome all who were inspired by her to attend. Info below:

Arlington Funeral Home
3901 N. Fairfax Dr.
Arlington, VA 22203
703-522-1441

In lieu of flowers, please consider donating to one of the following two organizations in honor of Juliet. Both of these organizations provided immeasurable support to Juliet and her family during her life.

Georgetown University Hospital Foundation
Hospital Administration – 1 Main
3800 Reservoir Rd., NW
Washington, DC 20007
(In MEMO section of check, please write: NICU Developmental equipment – in honor of Juliet Grace)

OR

Ronald McDonald House – Norfolk
404 Colley Avenue
Norfolk, VA 23507
757-627-5386
(In MEMO section of check, please write: in honor of Juliet Grace Smith)

When a child passes before a parent, it is said that a little bit of the parent passes too. I experienced this unnatural order early this morning when Juliet Grace passed away after just more than six months of the most courageous battle I’ve ever seen. Not sure whether we specifically were experiencing pain, sadness, relief, anger, or shock, it was in an environment of raw emotion from which our angel passed.

Yesterday, Juliet experienced serious internal bleeding, which required a significant amount of donor blood. This episode caused a chemical imbalance in her system from which she could not recover. Believing she had seen the worst, the doctor informed us that this episode was far beyond that from which we’d asked her to rebound earlier. Juliet was comfortable as she passed in the arms of her mom and dad, unhooked from the too many lines that had restrained and supported her. Again she demonstrated the perseverance that carried her well beyond medical expectations. And while her strength was immense, it is surely attributable to the thoughts and prayers of all of you who have followed a life whose briefness was exceeded only by the incredible impact she had on so many. A special thanks in particular to the staffs at Georgetown, Norfolk’s King’s Daughters, and Outer Banks hospitals, and Dare County (NC) Rescue in whose care she spent her whole life.

I am so very proud to be Juliet’s father, so lucky to have Jessica, Addison, and Mackenzie, and so touched for all of the support you have given my family since Juliet joined us in July. I look forward to celebrating her life and memory, and to ensuring that Juliet’s sisters carry forward her tremendous courage in their lives.

We will use this forum to share upcoming details about a memorial service and a memorial fund (in lieu of flowers, please) as they become available in the next few days.

A New Home

Juliet now resides in the PICU. She has her own room which I have already "decorated". She has her own TV which frequently is turned to the "meditation channel" that plays constant spa music. It is very relaxing - at times. Although, I think she is still getting used to the new scenery. So am I.

Change is always hard, but I am hoping this change is what Jules needs to get home. We will miss the NICU dearly, as they treated Juliet like she was their own child and got her to where she is today. Every one of the NICU employees will hold a special place in our hearts as we continue this journey.

Here is her new room. I need to send a "shout out" to the 6th graders at St. Theresa School who follow this blog and made a special angel chain for Juliet's bedside. (It's hanging on the door in the picture above.) Thank you so much for her angels and for keeping Juliet Grace in your prayers.

Today's big change was feeding. They started to feed Jules through her second stoma. This will give the lower section of her intestines a chance to work. This will also help her to finally absorb some good nutrients. For now, they are only feeding her this way - not into her stomach. They are starting this feeding even slower than before and will increase the amount/ speed as she tolerates. If it goes well they will feed her both ways to maximize absorption. The thought is if we can finally get her some good nutrition she will be better able to heal. Gaining "good" weight is one of the biggest goals right now as she hasn't really gained any actual weight since October.

What a difference a day and a few chest tubes make

Juliet was a new girl yesterday. Her size was relatively back to normal. She could fully open her eyes. Her vent settings were decreased. She was maintaining her blood pressure (with only a little medicine) and her kidneys were working again. She was MUCH happier. Apparently, she likes chest tubes.

The plan for today is a big move for Jules. She will be transferred to the PICU (pediatric ICU). The doctors (NICU and PICU) feel like it would be best for her to have a "new set of eyes" treating her. Many of her issues are no longer "NICU issues" and she seems to be in a vicious cycle without making forward progress. It is very sad for Chris and I to leave the NICU, where so many of the staff love Jules and know her so well. However, maybe this change is what we need to get her closer to home.

3 new accessories

Well...I spoke too soon. This morning I entered the NICU to find a crowd around Juliet's bedside. The surgeon was there because her incision was opening wider and her stoma was leaking into it. He was making a contraption to try to prevent that from happening. Juliet was also more edematous and more lethargic than yesterday. She could barely open only one of her eyes. She was back on high doses of her blood pressure medication since her kidneys stopped adequately functioning last night. (If her blood pressure is too low, her kidneys don't work.) They had already done a ton of labwork and had ordered an ultrasound of her abdomen and liver, a follow-up chest xray, and a cardiac ECHO. They removed her other chest tube since it wasn't in the right spot and was no longer draining fluid.

By mid-afternoon all tests were completed and all showed a large reaccumulation of fluid in her lung space - on both sides. They had to put 2 new chest tubes in to drain it. They also attached a wound vacuum to her open incision to help it to heal. This child can not catch a break.

Still behaving....for the most part

Since Friday, Juliet had a few good days of losing the fluid that she had gained last week. The last 2 nights she has gained again, but just a tiny bit (40 g). Her last remaining chest tube is barely hanging on, so hopefully it will be removed today. However, yesterday's chest xray was a little suspicious for more fluid in her lungs so it may stay. She has had a few decent days and hopefully will be able to come off of the ventilator soon. She started getting a LITTLE more milk yesterday and we got to snuggle! It made us both SO happy! According to the pictures from Friday night, she rang in the New Year in style: :)