Tuesday, May 25, 2010

Cholestasis

I read this on a stillbirth website...I keep thinking of her because I too was told "lightning doesn't strike twice" and it did.

I have had two stillbirths. On June 4th, 2008 at 34 weeks pregnant, I stopped feeling Jake move. I went right to the hospital, and I was told that the baby i was so excited to meet , and love, had passed away. He was delivered on June 5th 2008, 6lbs 4 oz.. absolutley beautiful. It was the most devasting day of my life. I was told that an autopsy would most likely show nothing, and that it was a fluke.. My three year old son was so confused, asking where his brother was , and why wasnt he coming home. I was told to heal emotionally and physically and try again... "lightining doesnt strike twice"... Well it did.. 7 months later i was pregnant with Lucas.. until 32 weeks, when i woke up and he wasnt moving . I went to the hospital to relive my nightmare all over again... The same Dr. in the same room, had told me that Lucas had passed away. On Aug. 25th 2009 i delivered baby Lucas.. who loked just like his big brother Jake.. Why do we not see this on a baby story, why are we not prepared for somthing that happens so often.. somtimes more than once to the same person. This needs to be a topic that is discussed. Also, just so you know.. itching during pregnancy is normal, but severe icthing on your body where you make yourself bleed is not.. it is a sign of cholestasis which causes stillbirth... noone took my symptoms seriously and because of that i have lost two angels. In memory of Jake and Lucas xoxo I should have 3 kids in my house right now.. one simple blood test could have saved my sons lives.

Early Mornings, Late Nights

Up again - what's new - can't sleep when the rest of the world is healthily dreaming and resting up for tomorrow.  It mainly comes down to two factors:
1) general worry about the baby at night. That's when Jackson died. That's when a lot of babies die. I last worried for Jackson late at night before I fell asleep, and the worry turned out to be real. I have learned how helpless even the birth mother is in caring for her unborn child... Certainly much better care standards could/should be offered today, but even then, we are blocked out from baby in the end.
     I feel overall that the baby will live. That is 100% due to spiritual confirmations this direction. As time passes, more prayers are uttered, and more faith is exercised my confidence grows. (Here's me in the middle of the night after being awake and worriedly tracking movement, "Remember Lord, when you said he would live? Please keep your promise... I will trust that you will," then back to sleep I can go.) I do feel better now than I did even last month. But the initial worry may still wake me up, usually when I feel myself roll to my back - the "bad" resting position.

2) My other sleep culprit - generally feeling unlistened to. Even at my amazing doctors I feel like I'm swimming upstream trying to advocate for my baby. "Luckily" my daughter had such a terrible diagnosis that everyone in the medical community takes that serious as a future threat. But my son, who I carried longer, and do I have to remind them, is JUST AS DEAD as she is, they act like, "Ah, bad luck." Without any real research to back this "bad luck" diagnosis, I am diagnosed and this new baby's cord is consciously overlooked.
     I hate that I don't express my needs for his monitoring better. I am intimidated STILL, even after several concrete examples where my doctors just plain overlooked scientific facts/trends that my "bad luck" son gave signals of.
     I feel like I live in a world that's "flat." I know it's round. I know someday they will all know this. But today, they are SURE it's flat and I am just a silly, hormonal, paranoid mother.
     Feeling unvalidated is hard enough. I feel it, rattling in my head, voices of people who think,
        -why doesn't she stop feeling sorry for herself - it's not like she KNEW her babies
        - she lost a baby, but it's not like she lost a KID...geeze... etc.
So then to go to my doctor and also feel like what we have lost isn't substantial - it's emotionally draining. I am emotionally spent.  Too bad that doesn't make me tired at night!
       Anyone really good at arguing well with smart docs who wants to come to my appts with me and advocate?! I swear, if they don't renig the whole "we can no longer tell you if there's a knot in your cord because it doesn't matter," I am going to find a new doctor. Any suggested docs?

Tuesday, May 11, 2010

24 Weeks

     Feeling like baking a birthday cake today, because today my son is 24 weeks, meaning in medical terms, he's "viable" outside the womb! It's been a LONG anticipated day for me. He's kicking up a storm too. No front-facing placenta is blocking that out.
     Was it the day's significance that made me feel, for the first time, like a weight was lifting off? I felt both yesterday and today like life wasn't so bad. I felt more acceptance of our losses and our unique family. Maybe it's strength and understanding from the families at the Hospice retreat recently. Maybe it's the love and support of friends and family who tell us they think of our kids and respect what we've been through. I think getting Claire's headstone helped give us some closure and peace. I don't know, but, alas, that accepting feeling was fleeting!
     This morning I wrote a brief story for a sweet friend who is doing a service project with Laney's Legacy. They are a group that makes boxes for families in the hospital who just lost a baby. We did not get "Lanee's" boxes when we lost Jackson and Claire. They work with a different hospital. But we got a similar style box. We're most grateful.
     Writing the story I had to go back to the day I delivered Jackson...the same day we found out he'd died. The MOST racking memory is when my two little kids ran into the room, looking for their new baby. We were so unprepared for this. My dad had recently died, giving my daughter nightmares. My grandmother had passed away about 5 months before. How much could they take? We didn't know what to say or do and I am sure we flopped it up with them. But it's the confusion on my daughter's face that haunts me. It's the memory of her looking about the room trying to understand what was going on. I HATE, HATE the memory. I want to forget. I am so glad it's over, but I wish too that I could block it out. Anyone who knows me knows that is NOT my style, either. I am a facer - not a denier.
     So here's the story. It's rough and short. I hope it helps motivate the project. I hope it's of some use.

I have gone to the hospital 4 times to give birth. Each time has been unique, but also the same. Always, we have been blessed with a precious, perfect little child. We hold their little warm bodies close as soon as they are born and cry, touched by the sacred feeling in the room as we experience celestial purity arriving on earth.



The first two times I gave birth, I was able to take those precious little bodies home with me and bring more the the Spirit into our house, changing our lives forever.


The second two times, I had to leave my babies' bodies at the hospital, their spirits already returned to their Heavenly home, my heart and arms empty.


The shock of being told my full term son had no heart beat when we went to deliver him was staggering. I didn't think I could deliver his dead body. It was by grace that I went through the labor and delivery. I still shake or cry when I recall being wheeled out to my car down the same hallway as with my first two babies, this time without my baby in my arms. I didn't know what to do. We had no preparation. We didn't know anyone who had been where we were. Such things still happened in America?


If it had not been for the preparation and sensitivity of the bereavement staff, our tragedy would have been multiplied, for we truly would have left the hospital empty-handed. As it was, they quietly came in our room the day following delivery and presented us with a blue box. Inside were pictures a nurse had taken of my son. There were tiny molds of his hands and feet safely tucked inside. There was a tiny gold ring that had been placed on his finger for the pictures and was now for us to take home as a keepsake. The first outfit he wore was placed inside, along with other mementos that would soon come to sustain us when the emptiness was overbearing.


When my daughter died less than a year after her brother was stillborn, I anticipated getting the box while in the hospital. I eagerly accepted it, knowing how important it would be to my family in the coming year. It still sits in my counter, because I am not ready to put it away. I am grateful someone thought of creating these, and someone made it happen.


For all the pain we have suffered in losing our children, I know that past generations have similarly felt such loss, but theirs was multiplied. Less than thirty years ago, mothers didn't get to hold their baby after delivery, there were no photos taken, there were no memory boxes made and delivered in love.


We cannot stop death in our society, but people like the creators of Laney's Legacy help soothe the grief. Getting a hand made box that reflects thoughtfulness and tenderness makes me feel like there are people out there who mourn with me, who cry with me, and especially, who value the life of the tiny babies who never get a voice in this life. From my family here on earth, and Jackson and Claire and their siblings above, thank you for contributing to Laney's Legacy.

Saturday, May 8, 2010

Happy Mother's Day!

This can be a wonderfully, terrible time for us mamas with babies on the other side. I'm thinking of all my friends who will have secretly heavy hearts like I will.
I am also thinking of my mother in law, who is with my kids, and how much I hate not shopping for her, and how much I hate that her mom is here without her baby, to share the day with.
So, here is a little humor for us all --
I asked my daughter yesterday while doing her hair for school what kind of mom would she be if she was a mom...I was wondering if she'd do her girl's hair, since she hates me doing hers. I wondered if she'd want to work, or if she'd tell her kids lots of jokes and take them swimming a lot...

she said,
"Um...a Mexican mom."

Ok! I can't really compete with that, although I did grow up on the south side of Tucson so maybe that will add a teensy bit of "Mexican Mom" to my mothering. :)

Well honey, I hope you get your wish of growing up and being a Mexican Mom. :)

Oh! And not to withhold any of my son's humor from you on this hard weekend - he's a sober, thoughtful child who has recently discovered jokes. He made one up this week - also in the morning while getting ready for school.
An Unwritten Novel called Being Prepared,
by Justin Case

And a final one by my husband to make the kids laugh -
What did the Mother Bullet say to the Father Bullet?
Congratulations, honey! We're gonna have a B.B.!

Wednesday, May 5, 2010

Trey's scary pic at 20 weeks, 6 days

Here's that pic I mentioned a while back - obviously I haven't been blogging. Life has been too hard for the computer... but even late, I want to post this pic!


Can you see the cord right up by his neck? Can you see what looks like a knot in it? This was a joy kill for sure! We loved his profile! How fun! What a boyish face! But that cord...
The tech assured me it was not around his neck, but did not say whether or not it had a knot in it. Unfortunately, it is normal for the cord to be all over the baby and such throughout pregnancy. And at 20 weeks, 6 days what can be done? No delivery will save that baby if the cord kinks, collapses.
So I had to wait it out...
I showed the pics to a doctor soon after and she assured me that it was not a knot. They also re-took pics two weeks later... here are a few:
How precious! No knots.
His mouth looks just like my son Jackson's mouth looked. I have stared at that feature on Jackson's face more than at any other. I have longed to know what he would look like when he smiled. I have felt the need for patience, knowing i will see it, but not for so long.
I'm thankful that this little boy just may have his brother's mouth! It's a small detail to many, but to his mom, it is a visual link that will give me joy when he smiles, and help our little family always remember his brother.

Thinking of You

Yesterday we were down for the loss of a family member's babies - miscarried at 7 weeks.  We are thinking of you and your family, remembering that they are all a part of it, even at young, young ages.
I also received a call from a tear-filled friend in Colorado, wanting to know how to help her employee that just had to deliver a full term still born baby that day. I was so sad that this woman was just starting the road that I have been on now for over a year... I know what she must be experiencing, starting with the surrealness of physically delivering a baby you will only get to hold a few hours, then never see again in that form in this life.
I'm worrying for a friend in Canada who I haven't heard from in a while who's pregnant, after losing her first to a cord accident, then miscarrying multiple times after.
The world does not know the secret mourning in the hearts of parents, instinctively longing for their children but forced to let them go. I love you all, in all your unique situations. I'm hoping the future will be easier for our young mothers coming up after us.