Saturday, October 31, 2015

#lovefromlainey

Inspired by my daughter in Heaven and my caring bridge website Love for Lainey I've found a way to honor Lainey, this her first birthday in Heaven.

I've been told her story was inspiring, that through my words many people were touched by her short innocent life.  As our family continues to grieve her loss I continuously find ways to promote healing and acceptance.

Acceptance, in that we appreciate God's gift of Lainey to us and that we accept his will for her and our family.  More importantly acceptance in that it is okay to talk about your loved one, even an infant, who has passed.

During the month of November our family will share random acts of kindness in Lainey's honor.
I've printed a note I plan attach.

LOVE FROM LAINEY
Lainey passed away in November 2014 just before delivery due to 
complications associated with Trisomy 18.

Our family wants to remember Lainey with random acts of kindness during the month of November!
In honor of Lainey please accept this gift!  If you feel inspired please share a gift in her memory
 and tell us about it!

To share your experience: #lovefromlainey

Or email us at lovefromlainey@gmail.com

These gifts will not be expensive, or elaborate, and some may not include a note.  By adding a note, it is our hope that a recipient or giver will share their experience.  This would mean so much to our family, especially our girls.  It will show them that when we give to others we are truly the ones who receive.  It will show them that Lainey matters, that she is loved.  

Our gifts will include:  A visit with a neighbor, cookies to a family, cash taped to food items in a grocery store, maybe coins taped to a vending machine, buying someone's meal in line behind you at the drive through...we'd welcome ideas!!!  

Also donations may be made in Lainey's honor to any of the listed organizations.  Each of them were founded by parents mourning the loss of their infant, each of them continue to keep the memory of their own baby's alive by giving so much of themselves and mailing special packages to families facing loss.  We received gifts from all four organizations and they mean the world to us!  

Molly Bears send weighted bears, Held your whole life send hand stamped necklaces and key chains, Hopes Healing Hearts send weighted hearts, the exact weight of your baby and Robby's Rabbits sends a stuffed animal to hold.  


I hope to donate preemie outfits to our local hospital.  Lainey came a few weeks early and she was so very tiny, the clothes we had for her did not fit. She was dressed in clothing donated to the NICU at our local hospital.  We were able to take home two little outfits she wore.  (I may not be strong enough to shop for these items this year, but one day!)  

A smile, card, a phone call to someone you've not talked to in awhile, are all great ways to give and they are virtually free.  Please join us if you can!  So excited to hear about the love and service performed in honor of Lainey!


Saturday, October 10, 2015

Wallow

I haven't been posting, though I need to write.  I can't totally confess to wallowing, but I have my moments.  I feel like people get tired of those moments, so they are usually kept private.

Someone tried to hand me a baby shower invitation a few weeks ago, I hesitated in taking it.  I got the impression (or maybe it was even stated) you've got to start (doing this) sometime.  I took the invitation knowing I would not be in attendance.  Certainly not for a shower before a baby is born. There is no guarantee.

I want to say I've been feeling better, but there is this underlying little black rain cloud hanging around.  I really try not to dwell on the past, I am still in that rut, that postpartum rut. I find little satisfaction in things right now.  Overall loneliness and depression.

I still think most would be surprised by this as I still joke and have fun...it's those quiet moments, alone time in the car, inability to accomplish tasks, little desire to do so.

I saw online where a popular actress was seeking treatment for postpartum, her baby is 10 months old.  Validation I'm not crazy, that it is real and that I haven't been delivered from it yet.

The 11th month mark came and went, I didn't acknowledge it to anyone, as I said people grow tired of hearing it.  Yet part of me is dying, 11 months since I've held my girl? 11 months away from her.

October 1st hit and I had this slight panic attack, it was the month before November.  The month before November arrived!  November is the month we lost Lainey.

My birthday is coming up, I just don't want any acknowledgement of it, I don't want well wishes.  If anyone understood what' I've been through they would understand it's not the great celebratory day they think.

See how miserable I am?  I'm just not through the postpartum yet.

Friday, October 9, 2015

The land of what ifs...

I am really proud that I have not allowed myself to live in the land of "what ifs".   I've learned so much since the last time I was in this position.  It takes a conscience effort to not dwell in the past.

Yes, I've done very well.  Honestly you have no idea how well.

For a moment I want to write about it, I want to go there...I want to be write about my unfulfilled wishes.

Why, why couldn't she be born alive?

Why couldn't we see her open her eyes?
Why couldn't we hear her voice?
Why couldn't we have her even if for only a few moments?
I wanted my family to see her alive, why couldn't we see her alive?

We only had her 7 weeks and 3 days, why couldn't we have her longer?
I got cheated out of enjoying my pregnancy, feeling her move.
I didn't even know she existed until she was almost gone.

If I would have realized she wouldn't have lived, I would have recorded her alive in a sonogram so I could watch her move.

Why did I have to do this twice?

Why do other trisomy 18 babies live?

Why do I have to suffer postpartum?

Why the hair loss, the weight gain...for no baby?
Why not give me a break?  If I have to give her back (which I willingly did) can't you let the weight just fall off?

Why do people abandon their babies when I would have done anything to keep mine?

I should be preparing for a first birthday, and a second Christmas.
Smokey should be laying at the base of Lainey's cradle watching over her.

There should be diapers to change, blankets to wash, a baby girl to bathe.

It makes me so mad that God thinks I can handle this again.
It makes me worry that the loss of my sweet babies is in preparation for a greater loss.
What could be greater?

I've buried two children, I do not want to bury any more.

Sometimes I want to be angry with God.  I may allow it for a split second, but the spirit helps me reel those feelings back in almost as soon as they are cast out.

These moment are ever so brief, I just don't allow them.  If I did, they could destroy me, my progress and my family.

Wednesday, October 7, 2015

On this day last year

 Reading this I'm numb, what a hard thing to go through, how did we ever get through this past year? 

More than just a broken heart

Yesterday was a day of all answers, it is the worst case scenario.

The echo cardiogram told us Lainey did indeed have a genetic heart defect called Hypoplastic Left Heart Syndrome.   Dr. Amanda Cook basically explained there were treatment options available if Lainey was an otherwise healthy baby, meaning if she did not have additional chromosomes.  

Those treatments are:
1.  Surgery within the first 3 to 5 days of life.
2.  A second surgery within 3 to 5 months of life.
3.  A third surgery within 3 to 5 years of life.
4.  A total heart transplant in the teenage years.

Dr. Cook then explained that if Lainey had Trisomy 18 (a 3rd Trisomy 18 Chromosome)  surgery would not be offered.  Given what is known about Trisomy 18, medically speaking surgery would not change the eventual outcome and would put a baby through unnecessary suffering.  

Dr. Cook mentioned the findings of Lainey's right arm, then possible suggestion the left hand was cupped, and having this sort of heart defect all point to signs that Lainey may have Trisomy 18. 
 
She of course said all the "I'm so sorry, please call if you have more questions..."  and I went to the car and cried.  

When I got home I had a missed call from our Genetic Counselor Jean St. John.  I knew she had the results of the cell free DNA test I had done last week.  

I called her back and she asked about my appointment with the Echo, I told her:

"Well, I didn't get good news from them, and I am not expecting to get good news from you either". 

Jean said, "It's not, Lainey tested with 99% certainty for trisomy 18".  

(Just like that, it's over)