Chromosome Test Results are in...

Received a call this morning from Dr Landers. A report came across her desk that she thought we'd like to know about. She already got the chromosome test back for Gabriel. As it turns out, he had an extra Y chromosome that caused his kidneys to never develope. There are different types of Potters Syndrome - Bilateral Renal Agenesis (no kidneys) is Classic Potters.

This means that it isn't a gene Derrick or I are carrying, it was just "Bad Luck" (the story of my life it seems - bad luck when I got suspended from high school, bad luck when I had my back surgery, bad luck when the teachers wouldn't give me all my homework and my grade point average dropped significantly, bad luck that we bought our house at a bad time, bad luck that we bought a "lemon" for a car... the list goes on). So, this result means that our risk of it happening again is much lower. Instead of being a 1 in 4 risk, we have about 4%...

The interesting thing about this abnormality is that there are kids out there living with this extra Y chromosome... Some are reported to grow faster, some have other developmental abnormalities, and some reports of Potter's Syndrome. So having this extra Y chromosome isn't always so serious or fatal, some people can live with it forever.

Dr Landers is sending us a copy of the report. I probably won't understand anything on it, but I do intend to try to see if I can find out more about this Y chromosome that Gabriel shouldn't have had. I know I can turn to the genetic councelor we met earlier if I still don't understand any of it. She was very smart about all the genetic and chromosome stuff.

Derrick went back to work this week. Its been tough being home all day without him here. I'm hurting more now than when he was here all day for support and to keep me busy. Yesterday was especially hard, I was busy babysitting my neice and nephew most of the afternoon, but couldn't keep my mind off Gabriel and his sweet face. But I got through another day and woke up this morning to some good news. Maybe that means today will be a better day...

Memorial Tattoos

2 weeks old...
Gabriel would be 2 weeks old today. We are still coping day by day, but I'm really starting to get nervous about him returning to work. He's been my main support, my rock and keeping me busy the last few weeks... what happens when he goes back to work and isn't here all day with me anymore? Luckily I have friends who are planning to stop by during the days next week so I won't be home alone with Evelyn all day. 

We talk about Gabriel at various points throughout the day. Sometimes the smallest thing on TV or in a store will start a conversation about him. He's on our minds all the time. Every night I say good night to him before I go to bed. I miss him so much and wish he were here with us all the time.

Tattooing our heartache away...
Last night, Derrick and I went down to our tattooist at Persona Studios to get our memorial tattoos. We'd designed them for the last few weeks and new what we wanted to get. I had hopes that the pain of getting the tattoo would relieve the pain in my heart for just a short time.

Derrick went first and his turned out beautiful. He did it to match the one he got for Evelyn about a year ago.



Mine has been being designed by me ever since we got the diagnosis. I knew what I wanted to include but just needed an artist to put all the elements together. I had a vision and he put it to life. And, what an amazing job he did too! It looks like his footprint was stamped right on my shoulder!

He kept the footprint the actual size, so my tattoo ended up being a bit bigger than I had originally planned, but I'm so glad he wanted to do it that way.  When Derrick drew his out he added the ribbons on either side, so when we were doing mine, we took the ribbon Derrick drew and enlarged it to fit my tattoo. So Derrick actually drew my ribbon :)

I'm so in love with my new tattoo, it is the biggest one I have gotten so far, and also the most painful one I have gotten. But it was all worth it so that my angel will walk with me forever.  (And by the way, it worked. For that hour and a half, I was so focused on the pain of the tattoo, that my heart wasn't hurting. But after I saw it in the mirror the heartache was different, I can't explain it, it was just different.

Being There

I'm currently reading "Chicken Soup for the Greiving Soul" and have found a few things I want to share. But this one felt especially fitting so I thought I'd post it in here first. This way, if someone who is reading or has followed our story knows someone who is going through a similar journey - maybe this can help.

"Being There

Do you know of someone
Whose precious child has died?
Perhaps she is a neighbor or friend
With whom you can confide.
You assume that she is suffering
A tragedy so deep,
That there is nothing you can do
Since all she does is weep.
You feel that if you see her
There is nothing you can say
That would make her precious child come back
Or make the pain go away.
And if by chance you meet her
And have to face her grief,
You'll do your very best
To make this meeting brief.
You'll talk about the weather
Or the lady down the lane,
But you'll never mention her child -
That would cause her too much pain!
And when the funeral's over,
And all is said and done,
You'll go home to your family
And she'll be all alone.
She'll go on, she'll be all right, time heals -
Or so it seems,
While she's left alone to pick up the pieces,
Of her shattered life and dreams.
 -OR-
You can open up your heart
And find that special place
Where compassion and true giving
Are awaiting your embrace.
"Today I'm thinking of you in a very special way,"
Or, how about "I love you!"
Are some loving things to say.
Sometimes a very simple task
Like picking up the phone,
Can help her feel no-so-quite
Desperately alone.
Whatever comes from a genuine heart
Cannot be said in vain
For the truth is, its these very things
That lessen her great pain.
And when you let her talk about
Her child who is now dead,
You'll know this is far greater
Than anything you've said.
So will you reach out with all your soul
And let her know you care?
For in the end there's no substitute
For simply BEING THERE!
- Debi L Pettigrew

Thank you so much to everyone, for "Being There"

10 days since we met our sweet Gabriel Ray...

Took Some Time for Myself
On Friday, I decided to take some time to myself. I needed a change and to pamper myself a little. So I went over to the local Spalon Montage and got my hair cut. She cut off 6 inches and gave me a different style. When we were planning for after the birth I new I needed to plan some things to look forward to and this was one of them. It'd been 2 years since my last haircut/trim, so it was much needed.


The Before:

The After:

Picnic With Gabriel
Yesterday, we went to the cemetary with my mom and had a "picnic" with Gabriel. But, Minnesota winters are quite cold so we ate in the truck. I had been wanting to go out to the cemetary but wasn't up for it all week, so it felt good to go see him. It was sad though, that while we were there we noticed a few other "new" plots... How terrible to see how many other parents have to go through as much hurt and pain as we have. I can only hope that they too have found an incredible support system like we have.


On Checking the Mail
In the mail, we recieved the information regarding his birth certificate, but not his death certificate information. We have to send in money to get a copy of his birth certificate. Sadly, I know we'll also have to request a copy of his death certificate... something to file away and hopefully not need to pull out or look at again, or at least for a long time. There are just some things that are such a negative reminder, I feel like I need to weed out some of the reminders when I can.

We are still recieving loving and thoughtful cards from our friends and family (these are good reminders of the love and support we have!) Its so nice to open a card and know that someone is thinking of us and sending us their love.


How We're Doing
We are still taking things day by day. Derrick talks more about Gabriel now. I know he loves his little man and I think it hurt too much for him to really talk about it. But now he brings it up a few times a day, talking about what makes him sad, what it would have been like if he'd be here, and about his birthday. 

The hardest part for me right now is realizing that I have a son but I don't get to be his mommy, I don't get to do all those things that mommy's are supposed to do. Instead of carrying him in my arms, I only get to carry him in my heart. Instead of feeding him, I go out to the cemetary and have lunch/dinner with him. Instead of looking at his face, I look up at the sky and mentally run  through pictures of what he looked like and those few precious moments we got to spend with him.

There are other hard parts too. I constantly crave holding him, snuggling him, and rocking him. I want to feel his warmth and hear his cries.  But I know these are only things I can imagine now.  Hopefully someday we'll be able to experience the thrills of a new baby again.


Waiting on the Results
Waiting for the autopsy results to come back seems like forever. They said 6-10 weeks, and looking out at the future, that seems like a REALLY long time!  I want to know the autopsy results because Dr Buchbinder said that its possible the kidneys had formed and just weren't functional... Or perhaps they didn't form at all? Only the autopsy will tell us that forsure. I'm also hoping the autopsy will tell us his eye color. I never got to see his eyes and I am curious what they were. Its a small detail - I know - but something I'll always wonder about. 

They also did chromosome testing on him, they said this would tell us if its a gene one of us is carrying or if it was a sporatic occurance. They've all said it was probably sporatic, but I'm not getting my hopes up incase it was genetic.  If it is genetic our risk is 1 in 4 of this happening again, if it was sporatic then our risk is 4%.  So it'll make a big difference as far as deciding if we will try for more babies or not.  We both know that we want more, but if our risk is 25% then we will have to seriously reconsider if/when we will want to try to get pregnant again...


Looking into the future
I'm not looking forward to Derrick returning to work next week. He's been my rock, my main support through all of this. I'm planning to keep myself busy for awhile so that I'm not just sitting around at home.  Perhaps this is my chance to reconnect with people and get out of the house.

Each day gets easier and easier, although not by much. I still feel like its going to be a long trying road for us. I plan to start looking at support groups soon so I can meet other parents who have gone through this greiving process before us... But it may be awhile before I feel up to actually attending a support group. I guess we'll just have to see how I feel.

"Precious Little One, We had you in our lives such a very short time, but we’ll hold you in our hearts forever. It seemed like only a fleeting moment, but it was long enough to see you, touch you, hold you, love you. It was long enough to know that your life was indeed a gift- no matter how brief, no matter how fragile, Your life was indeed a gift, and we’ll hold you in our hearts forever."

One Week... A letter to Gabriel.

"Some people only dream of meeting an angel, we held one in our arms"

Sweet Gabriel, our little man

Today is one of the days I wasn't counting down to, I never wanted to say "its been a whole week...". I want to say that I love and miss you so much, every minute of every day I'm thinking about you. I wish you were here with us, I want to hold you and love you, I want to snuggle with you and feed you and do all those things mommy's are supposed to do.

You were wanted, loved, and prayed for from the start. You are perfect in every way.  You may not have had any kidneys, bladder, or enough lung development, but you were created perfect for the purpose you were designed for - to be our angel.

We'll never forget the moments we spent being your parents. Your presense in our lives has taught us to live life to its fullest, it has taught us about love, life and hope.  We will never be the same people as we were before you came into our lives. 

We will always love and remember the times you spent playing and kicking inside mommy's tummy. Seeing you on the ultrasound screen sucking your hands and wiggling your feet. The times I would inconveniently have to run to the bathroom because you thought my bladder made an excellent pillow. The nights you kept me awake by kicking and dancing - I was tired and frustrated - but loved feeling your life inside me.

We spent much time preparing for your birthday, but nothing could have prepared us for the love we felt as we got to meet you, kiss you, and tell you how much we love you. Especially for the surprise you gave us by hiding you boy parts during the ultrasounds. We could feel your warmth, feel your soft skin and hold you tight.  You left us, surrounded by the people who love you the most... Everyone was there for you, to love you and to say farewell to you.  Saying goodbye was the hardest thing I've ever had to do. I didn't want you to be gone, I didn't want to let you go... Nobody should have to say goodbye so soon after meeting someone so sweet. You gave us everything you had during those 35 minutes we spent with you. Although I never got to see your eyes and never got to see your smile, I know you were saving your strength to stay with us just a little longer.

We are so blessed to have been chosen as your parents, to have gotten this time to spend with you and cherish you. To be lucky enough to have such a beautiful angel watching over us. Thank you for everything you have taught us on this journey we traveled together. You're in our hearts forever and beyond.

- We will love you forever and always -
Your mommy and daddy.

Gabriel Ray - Rest In Peace.

The morning we met Gabriel came and went. That afternoon we were able to go home and be with Miss Evelyn. We relaxed, we cried, we held eachother close. That night I walked out to my car to get something, i noticed the moon was in the east sky - it was almost dark. Right next to the moon was a single star. It was shining extra bright and twinkling beautifully. For about 15 minutes I stood there crying and talking to Gabriel, it felt as though our little angel was shining a special star for us that night. We felt so loved, surrounded by his presence and the warm embrace of his tiny angel wings.

 Rest In Peace Gabriel Ray
On Monday, December 12th at 2pm, a small group of friends and family came out to the cemetary to lay our little man to rest. David from the funeral home offered to let us see Gabriel one last time before he put our last few items with him and sealed the cradle (infant casket). We had decided we wouldn't because we had said our goodbyes at the hospital. However, after asking him what to expect Gabriel to look like, I decided I had to see him one last time and give him one last kiss. Gabriel looked so comfy snuggled up in his blanket with his bear. He looked better than he did the day he was born - his color was normal, he looked so peaceful. Derrick and I both gave him a final kiss and said goodbye before he closed the cradle tight.

Derrick carried our angel over to his plot where he would lay to rest forever. I carried the 3 roses we brought him, one from me, one from Daddy, and one from Evelyn. The service was short (December in MN tends to be chilly). I was tough for me because it felt so final, it was over, he was gone... officially gone.

As we walked away my heart felt heavy. I didn't want to leave him there all alone...

Our family came back to our place where we had sandwiches served by Derrick's family. I was able to connect my computer to our TV so that we could play the slideshow photos of his short but precious life here with us.  Derrick put in a cd of soft piano music. It was wonderful to share Gabriel's birthday photos with our families.

That evening, after everyone left - we reminised on the last few months of our lives, the moments we spent with him, and the day he was born.

Morning Mourning
Mornings seem to be the hardest on me. I wake up crying as I realize I'm not pregnant anymore, I'm not carrying him with me... he isn't here. I struggle to get the courage to get out of bed, I could stay there all day.

Luckily, Evelyn always comes to find us. It never fails, she always manages to put a smile on my face encouraging me to get up and play. That's where I find most of my motivation to start each day.  I have moments throughout the day when my heart gets heavy and I might fall apart, but I also have moments when I just feel so blessed that he is watching over me.

A constant reminder...
Sunday morning, my milk supply came in. The constant throbbing pain reminds me every moment that I don't get to feed Gabriel, I don't get to hold him in my arms anymore. It seems as though my body is craving my baby as much as my heart is...  I don't know what hurts more, the physical throbbing pain or the emotional pain that follows.

Support System comes around
Since he was born, our friends and family have not left our side. They are checking on us, calling us, and reminding us that they are there if they need anything. Some people are bringing us dinners so we don't have to worry about that part of our day, some people are just coming by to show love and support to us.

Its been remarkable, the way people have really been there for us. Now that the burial is over though, it seems to be slowing down a bit. Which is ok because Derrick has been wanting time just to ourselves to mourn and grieve.

Our house looks and smells beautiful. We've recieved numerous bouquets of flowers. It really brightens a persons day - especially in the middle of MN winter - to see beautiful, colorful flowers all around you. My house looks like spring! My favorite!

We continue to take each day as it comes, each moment as it comes. Its a rough and rocky road, but its a journey...

Recieved a surprise today!

My mom had been texting me the last couple days, she kept telling me they were up to something but wouldn't tell me what. I was actually a little nervous about having a surprise... wasn't feeling up to "surprises" given what we are currently working through. Little did I know this surprise was going to be beyond worth it.

Around 12:30 I was writing my message to be buried with Gabriel - already a semi emotional moment for me - when our doorbell rings. Derrick goes to answer it but went outside instead of letting them in, I was confused. Next thing I know, in walks my younger brother Patrick!

Background story:  My younger brother has been stationed out at Fort Irwin in the Mojave Desert California since August. It was upsetting to me that out of our entire family he wasn't able to be here, that he couldn't get away from the Army to come be with is family during this time...

Little did I know that my older brother had arranged for him to come home! What an emotional, but very pleasant surprise for me! My family gets to be all together, and he gets to be here for the burial on Monday!

He's in the Wolves jersey

Still can't believe he's here, that he was able to get away for a weekend to come home when I wanted him here the most...