Amelie

It’s officially come – Oliver is 16 days old. One day older than his sister’s last day here on earth. As much as I am happy Oliver made it to day 16 – I cannot help but also feel sad that Amelie never did.

From this day forward, all my memories of Amelie have never been. But I will cherish everyday that I get to have with Oliver. As bittersweet as it is.

Words cannot express how happy we are for the gift you sent us. Your brother Oliver is absolutely beautiful and reminds us so much of you. There is nothing in the world we want more than to have you here with us. We so wish you had an earthly relationship with Oliver, as I know you would have been a wonderful sister.

Our heart still aches for you and will always till our dying days. If there is a heaven, wait for me. I, one day, look forward to embracing you in my loving arms again.

We love you dearly our little princess.

With all our undying affection, your mamma, dad & brother, Oliver.

I saw this poem on another angel mom's blog. It is appropriate and fitting for someone like me, who misses her daughter everyday.

I would give anything I own
Give up my life, my heart, my home
I would give everything I own
Just to have you back again.
(D. Gates)

I can safely announce the arrival of 4 new babies who presented themselves in the month of June.

Welcome to the world Alexandra, Lucia, Maxwell* and Oscar.  May your next 100 years of life be filled with health, happiness and love!

* Maxwell is a rainbow baby...He is the hope that many of us bereaved parents cling to.  What a special little boy he is, indeed.

Although most of you have heard my feelings (or not-so-clear feelings) about religion and God - I thought this prayer was nice.  Call it a nice morning request, if you will.

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Dear Lord,

Please don't let our brief time with our babies remain as anchors that we have to drag along life's way.  But instead - turn them into TREASURES that we can carry with us closer to our hearts!

Amen.*

* This prayer came from the Gaurdian Angels Perinatal Support Group newsletter I receive.

To my dear husband,

As you wake in the morning, your eyes remind me of Amelie's.  You have been a wonderful father from the day she was born until today as you protect her memory with such sensitivity.  I am so glad I've found a man who has lived up to what a good father should be.

Thank you for being so supportive during this pregnancy.  I hope that next Father's Day is a happier one for you.

Love, me

What I found most odd during my visit to England is that Paul’s family did not know what congenital heart defect Amelie had. Actually, they thought they knew – but they were a bit confused about the details. I suppose this should have not surprised me as this topic is not exactly a conversation starter.

Anyway, it got me thinking that maybe I should write a blog about it? I’m sure there a lot of our family and friends unaware of Amelie’s CHD. After all this is how rumors start…lack of knowledge about what she had, how she got it, why she died, etc. (I won’t even begin to tell you what one side of my family thought was the reason for Amelie death. I feel like an entire blog should be written about them and the odd things they have done, thought and said but they aren’t worth the stroke of a keypad…*&^%$#@!!)

What she had?

To begin, Amelie was born with an undiagnosed Coarctation of the Aorta (CoA) and her Patent Ductus Arteriosus (PDA) did not close post birth. More likely than not, her PDA did not close because of her Coarctation. Most children with CHDs either have to take drugs to keep their PDA open up until corrective surgery or automatically have an open PDA just so that it can offset what the original CHD is inhibiting.

Is it CHD hereditary?

Most CHDs are not hereditary. For lack of a better term, they are normally “flukes”. But because our daughter was born with a CHD, all our subsequent children would be eligible for a CHD screening. There is a bit higher percentage of it occurring again but not by a lot.

Why didn’t we know?

There are about 33 known CHDs. Amelie’s CHD is the hardest to detect via sonogram due to the nature of it (just for stats purposes, it’s a 50/50 detection rate on a fetal echocardiogram). The ultimate test would have been an echocardiogram post birth. But unless there are reasons for a fetal echo or live-birth echocardiogram – the normal protocol for a regular healthy baby does not require one. Mainly because insurance companies don’t cover the exam if there’s no reason to.

What would have been the alternative scenario?

If the ideal situation occurred and Amelie’s CoA was detected earlier – she would have had corrective surgery which has a success rate of 98%. She would have thrived to her maximum genetic potential, been able to play sports and that would have more likely been her last heart surgery (writing this breaks my heart).

We realize we would have had to have kept a close eye on her heart with a cardiologist – but nothing more than a few times a year as the years went on. I would give anything to have faced that task.

What happened?

Amelie died of a cardiac arrest in the early hours of Feb. 13th, 2007 and I think that’s all anyone needs to know about that.

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I hope this blog post clears up a lot of unanswered questions you may have had or were unwilling to ask us (which we appreciate). It took a long time to explain, but I think no time, is more right in telling the truth, like the present.

Here is more information about CoA and PDA:

I love these blog threads. My friend Ashleigh requested I fill it out…thanks for the fun & games, Ash!

Here are my responses:

1. What were you doing 10 years ago?

1998, I met Paul. At this point in our relationship we’d been dating for 2 months and were having the time of our lives. I was due to leave to Croatia in July and looking forward to that. I recall dropping Paul off at the subway stop before my European getaway and he knocked on my car window for a last goodbye and as I rolled it down – he blurted, “I love you” for the first time.

2. What 5 things are on your to-do list for today?

1) At work, doing work stuff (yawn)
2) Travel back home in 100 degree heat
3) Walk dog in 100 degree heat
4) Kick up my heals and relax

3. List some snacks you enjoy.

1) Hummus & carrots
2) tzatziki sauce (greek yogurt dip)
3) Oreo cookies w/ Milk
4) Vanilla/Chocolate milkshake

4. What would you do with a billion dollars?

1) Donate to Amelie’s heart charity
2) Set-up fund for those who cannot afford to receive a fetal echocardiogram (because of no insurance & crap insurance)
3) Give money to our parents so they can relax & retire
4) MOVE to a bigger house (that has been completely renovated)
5) Travel


5. List the places you have lived.

1) 3 places in Queens, NY
2) Westfield, NJ

6. List the jobs you have had.

1) Sales person @ leather store
2) Receptionist at dentist office
3) Lawfirm clerk
4) Executive Assistant
5) Marketing Assistant & Manager

7. List the names of people you want to know more about:

Oh, everyone is tagged for this. Its fun…do it!!...I want to hear from you!

Thank you for choosing me to pass this rose too, Ashleigh. I have known Ashleigh way before our lives turned for the worst after loosing our children. Although our circumstance of loosing our children is different, the love and devotion we have for them is similar. I am touched to have received this from her.

I am passing this rose along to a fellow heart mom who just “gets it”. Beth is Charlie’s mom…through her I feel like I know Charlie and because of her I feel like Amelie will never be forgotten by others. There are many other’s who don’t have a blog but have helped me with my journey tremendously: Margaret (Noah’s mom), Kristin (Kenny’s mom), Kelly (Cayman’s mom), Amy (Evan’s mom) Christy (Ryan and Lance’s mom) and Sarah (Westyn’s mom). Thank you for being such wonderful human beings.

Now it's your turn. Here's what to do:

1. On your blog, copy and paste the award, these rules, a link back to the person who selected you, and a link to this post. You will find the story behind the Pink Rose Award and other graphics to choose from there.

2. Select as many award recipients as you would like, link to their blogs (if they have one), and explain why you have chosen them.

3. Let them know that you have selected them for an award by commenting on one of their posts.

4. If you are selected, pass it on by giving the Pink Rose Award to others.

5. If you find that someone you want to nominate has already been selected by someone else, you can still honor them by posting a comment on their award post stating your reasons for wishing to grant them the award.

6. You do not have to wait until someone nominates you to nominate someone else.

I am so happy to report that a fellow heart mom has given birth to her daughter, Cara.  Cara is another rainbow baby who's gaurdian angel is her brother, Evan.  What a special little girl she is to have such a special little boy watching over her.

Congratulations!

When a parent dies, you lose your past; when a child dies, you lose your future.

- Anonymous

Although some of us are only mother’s to angels - our devotion to our children and their memory goes beyond what a meaning of a "mother" is.

I am so proud to be Amelie’s mom.