May the road rise up to meet you. May the wind always be at your back.
May the sun shine warm upon your face, and rains fall soft upon your fields.
And until we meet again, May God hold you in the palm of His hand.
-Irish Blessing

Wednesday, December 29, 2010

Wanting the End of the Road

I am having a really rough time.  Our household has been hit hard by viruses and illness and as a pregnant, grieving, stay at home mom, it is hitting me particularly hard.  I am doing the best to care for myself, but everyone else needs so much from me right now.  I don't sleep well at night and haven't for most of the pregnancy, but especially since the diagnosis.  I just toss and turn all night long and I'm so tired.  That, combined with my kids and husband coughing and sniffling all night as well as a babe within wriggling around, I am so exhausted.  Thankfully my body does finally get so tired it sleeps every few days so I can at least put together a little energy to get by.

With that said, I'm so very emotionally tired right now too.  I want this whole thing to be over with.  I love my baby with all my heart but my heart is breaking with every minute I have to wait for his or her arrival.  I just want it all to be over with as much as that pains me to say.  I am in such a bad place right now, I feel so used up and isolated.  So few people have to carry a child to term with a fatal diagnosis, why me, why twice?  It is what it is. That's what I've been telling myself to get by.  I know this too shall pass and I will keep going.

Tuesday, December 28, 2010

Lessons from Lord of the Rings

Nine years ago my husband and I  married.  On the evening of our wedding, we saw Lord of the Rings.  So many years ago I could not have imagined my own journey in life and the burden that I would carry.  In the Fellowship of the Ring, Frodo tells Gandalf that he wishes the ring had never come to him and Gandalf tells him that all people who live to see such times feel that way but that it is not their decision.  That our decision is what to do with the time we've been given.  I sometimes wish I had not been given these burdens, carrying two children that I know will not survive, that there is so little I can do for these babies. So much sadness and weight.  In the Two Towers I believe, a ruler buries his son and as he stands by his flower covered grave his heart heavy, he says that no parent should have to bury their child.  In the Return of the King when Frodo finally reaches Mordor and prepares to throw the ring into the fires of Mt Doom and he hesitates, wants to keep the ring for himself.  I have felt that, as I prepared the day of my c-section to give birth to Wyatt.  As much as I wanted to meet him, I remember crying and crying because I did not want to and was afraid I could not let him go, he was mine.  When I gave birth he would really no longer be mine and it was so hard to do what I knew that I must do.  The movies are so powerful because of the emotional journey, I just never realized how much that journey could speak to my own, how much of that pain I would soon feel from within my own heart.  All I can do is choose to do the best with the time I have been given.

Wednesday, December 22, 2010

Christmas in Heaven

As I sit here, I wonder what Christmas is like in heaven.  Even on a "good year" for me, it can be sad and emotional.  There is always a longing to spend one holiday with my son, to see his face one more time, to inhale his sweet baby scent or touch his smooth warm skin again. We comfort ourselves with a beautiful image of heaven and our loved ones there.  But what is it like for them?  Is it possible that in the place of heaven where there is no pain, disease or hurt that maybe, just maybe, on days like Christmas our loved ones miss us?  That as they watch us from afar their arms long for us as much as ours do for them?  That as they watch all the family gather, they feel isolated and alone?  It is possible to feel completely alone in a crowded room, so why not in Heaven?

I haven't bought Wyatt's Christmas present yet, I don't like to do so myself.  First, because he's a boy and with three girls at home and myself growing up in girl-land, I am kind of out of tune with what little boys might like.  So I like my husband's opinion.  I also like the feeling of us all picking something out together, a true sense of cooperation for the most worthy of reasons.  It is never something expensive, something little that can sit by his graveside and remind us year to year what he probably would have been like and how he might have changed.  Rarely, these toys disappear, I like to imagine some little boy visiting a his own lost loved one could not resist and loved Wyatt's toy just like he would have. We will take him a Christmas tree with brand spankin' new lights this year, battery powered  LEDs which should last quite a while and light him up for the world to see.  It is a fond memory from year to year, even when the short trek from the road to his grave is perilously piled with fresh white snow, to see his little tree glowing brightly in the darkness, the love of family reflected in lights.

A perspective on loss

I don't recall many smaller details about my pregnancy with Wyatt, so I'm going to be a little indulgent with details  this time.  Within days of finding out we would lose this baby my hair started falling out.  Not big clumps or scary amounts, but every time I washed my hair I would lose alot, I am single handedly contributing to a higher water bill because my shower times have increased for this very reason.  Finally, six weeks later, it is slowing a bit.  To give a bright side spin, I am lucky enough to have very thick hair so  it is completely unnoticeable to others.

I have lost so much more than hair, and of all the losses, that is the easiest to replace.  I have lost my innocence again.  Something which was taken from me out of the blue during a time when I was most happy and expectant in my life.  It took me over seven years to regain most of the innocence, the true enjoyment which should be present in  all pregnant women.  I have lost my identity as a pregnant woman.  I don't want to be seen or acknowledged for the precious life that grows within because those things are often accompanied by difficult emotionally draining explanations or awkward avoidances of the truth and blinking back of tears.   I have lost my identity as a mother.  I have defined myself as the mother of a child in heaven and three on earth.  Now I must make adjustments for one more in heaven.  I had closed that door but apparently it was not locked.  I have lost a wonderfully (for the most part) carefree and easy relationship  with my husband.  In its place is one that is strained by the shadows of grief, worry and death.  It will need to be well tended in the months to come.  It is so hard to care for a partner when each is grieving privately and in his/her own way.  Seeing beyond your own pain is almost impossible some days.  I have lost desire to face each day and to do more, to be more.  Most days it is enough to be, to meet everyone's needs and call it good.

With loss there is gain.  I have gained a perspective on the fragility of life and family.  Of how very delicately we are intertwined.

Thursday, December 16, 2010

Preparations for Baby Number Five

For the past five weeks I have been preparing.  That's me.  I'm a type-A, list-maker individual.  I like to know what's going to happen, when and then what after that.  So I've begun.  I've started a list of things that need to be done before baby is born.  I've started a birth plan, met with my priest to discuss baptism/funeral arrangements, thought about headstone/burial issues, purchased two small baby outfits, crocheted a baby afghan and hat and have begun another.  I've emptied off my digital camera memory card, charged my video camera battery and made sure we have a black and white roll of film ready to go for our film camera.  I have lists in my dresser drawer for my husband in case anything should happen to me and he needs it.  My worst fear is  losing control of the situation, because control over preparation is all I have.  When baby comes it's really not in my hands anymore and I am prepared to deal with that when the time comes.

I have also prepared for the months ahead, I have purchased birthday gifts and am trying to get as much done as possible should things veer of course in the future.  This baby was due about 3 weeks after my middle daughter's birthday but due to the likely earlier c-section it will now be born less than a week after her birthday.  My son's birthday is just 4 days before our oldest daughter's.  It is bittersweet to have them so close together, one so sad and one so joyful.  A very real reminder of the fine line between life and death.

The Numbness of it All

This I suppose relates to the luxury of grief. I have felt disconnected from this baby/pregnancy pretty much all along and probably especially so since the Potter's diagnosis.  My heart aches for this little one so badly.  But I basically feel numb about the whole thing.  I suppose it could be compartmentalization to preserve my sanity for the remainder of the pregnancy.  A survival instinct perhaps.  I don't dwell, I've found myself doing what needs to be done and for the most part just moving on. Oddly enough, this has probably improved my mothering to some extent since my emotions are numbed I am much slower to anger, slower to impatience, but sadly, likely also slower to smile and laugh.  I am distracted and forgetful.  I feel distanced from pretty much everyone around me.  Like I am surrounded by a dark cloud wherever I go.  It's hard to be fully present, my mind is always somewhere else.  Even waking to go to the bathroom in the middle of the night is a journey to intrusive and often upsetting thoughts.  My children are children and it is difficult to keep up with changing behaviors.  Of course, our youngest decided to potty train literally right when we found out about losing this baby.  It was so hard to breathe sometimes, yet I found myself lingering under the constant threat of dirty underpants.  (As an aside, she has done absolutely wonderful with potty training and is nearly trained!)  Parenting for me is always exhausting, but more so under the weight of this pregnancy and grief, yet I find myself almost underwhelmed.  I look at others around me who are so stressed by their (to me, comparatively "easy") lives and I wonder how things could be so bad in their lives to cause them such distress.  My husband always jokes to me that "you just don't get it" and that's true, there is so much about people and their harmful behaviors that I really don't understand.  Holding my child to his last breath has given me a new perspective on the important things in life I guess.

Wednesday, December 15, 2010

Take Care of Your Children

I live in a cold part of the country during the winter.  Each weekday morning I walk my daughter about a block and half away to wait for the school bus.  There are two young children that also ride that bus and come, more often than not, without winter gloves on.  It is absolutely heartbreaking to see neglect of a child's basic care and comfort and makes when I see something like that I can only imagine what kind of emotional and spiritual care those children receive.  I am by no means a perfect parent, I am human, and because of that I feel for others, especially children.  Children are so easy to bring into this world for most, and so lightly undertaken by some.  My heart was made very heavy this morning watching those children out in approximately 10 degree temps with bare little hands while mine were icing within my own gloves.

Suffering and the Luxury of Grief

With three young children, grief is a luxury in this house.  Last time I wrapped myself tightly within the blanket of grief.  I wore it constantly.  I do not have that luxury this time.  These children need their mother as much as the one I carry inside does.  I need to smile, listen, play and teach.  I need to model appropriate behaviors for my children, to show them it is okay to grieve, but that it is not okay to let the grief destroy me.  That even on the darkest days there are moments of joy or at least beauty.  That while I am awaiting death, I must celebrate the life all around and within me. That's not saying that I don't cry or think about the heavy heavy burden that I carry every minute of the day.  It is ever present.  But sometimes I just have to push it aside and allow some other emotion to fill me instead.  I could cry a million tears and it will not bring my children back or save them, I know this because I have already done it.  I can beg, barter, scream and yell and it will not change anything.   Sometimes I feel as if there is no hope. But that's not true.  Our first daughter brought hope back into my world, she restored my faith in goodness and lifted the dark clouds that surrounded my heart.  In her I saw the joy and innocence that had literally been ripped out of my body just one year before.  I think the best I can hope for is to be graceful with my words and my actions. There is no villain to this story.

Tuesday, December 14, 2010

My Own Worst Nightmare

At some point and time in the last five weeks I've taken a step back.  Immediately I sought out the support of others, not just others who have lost babies/infants, but others who have lost babies to Potter's Syndrome like we have and will.  I posted our story and gratefully accepted all who shared my pain.  One mom who I have known since after losing Wyatt said that losing another child is our worst nightmare come true.  I thought about that comment.  It is so right, this is my worst nightmare times one hundred.  But I also realized that I am every Potter's Syndrome parent's worst nightmare too.  So many are told, just like we were, that it was just a fluke, that there was no explanation for why it happened to their baby, that it was highly unlikely to reoccur.  That is what I believed and I honestly would have been terrified to find another family who had lost or was going to lose two children to Potter's.  Even more so because now that I am losing two, I still don't have the answers.  Blessedly at the level 2 ultrasound, they scanned my kidneys and I now know that I have two.  Our oldest daughter had some issues with urinary tract infants when she was two so we've had many scans of her kidneys and she also has two normal kidneys.  She did have a urine reflux condition which I inquired if it could be related to Potter's at the time and was told it was not.  However, after doing extensive research on the topic now, it appears they truly don't know and perhaps it was related.  There is no magical test which will grant us the answers we seek.  We have met with a genetic counselor and she had no statistics on the odds of recurrence or any answers as to how this could have happened twice in our family. I have no answers, only the reality that it has happened twice and most likely was not a fluke for us.

And I feel awful sharing my story now.  Because I know that reading it after losing Wyatt would have terrified me and most likely terrifies many, if not all, parents who read this. It's almost too much to think about in terms of percentage and numbers.  I have found statistics saying that Potter's Syndrome happens about 1 out of every 3,000 to 5,000 births.  It has a 3-5% recurrence rate and only 20% of Potter's cases are classic Potter's as in our case.  That makes us quite a statistical anomaly.  It is our worst nightmare come true.

My Faith Part Two

Like a tornado, the thoughts swirled in my head, threatening to tear everything inside apart.  How could God do this to me a second time?  Why us, what have we done wrong?  Why now, why this child?  Hadn't I weathered the storm already, and rebuilt, shouldn't I be allowed some peace?  God is supposed to be kind and merciful, right, so where was the kindness and mercy in taking not one but two of my children?  I also thought about sacrifice and God Himself.  I feel I am earning the right to say this - God only had to sacrifice one child, why two for me?  Have I not already paid the ultimate price?  It took alot of strength to feel those things but not to allow them to take hold of me like they did with Wyatt.  This was not about me, it is not just happening to me and I know that my life will go on after this baby is born.  I cannot spend my time feeling sorry for myself and dwelling on questions to which there are no answers.  I may never know exactly why my children died and even if I were given the answers I may still not understand.  What I can do is to be.  To be in the present and to live the life I've been given without having to have all the answers.  I am my ship's captain and there will be storms but the waters will also calm.  I have weathered the worst of storms and the waters did calm, I must believe that they will again.

My dad told me that it is part of God's plan, but I do not believe that.  I would rather God strike me down that take just one of my children away from me.  But, God is not vengeful either, is he?  I didn't get the miracle I desperately prayed for with Wyatt and to believe that it was all God's doing is to destroy my foundation of faith - did I not pray enough or hard enough or use the right words?  It just cannot be, God did not do this, it just happened and I accept that.

I had recently taught a lesson to my kindergarten class about God as our Heavenly Father.  So I started there.  If God is my Heavenly Father, then he is my parent and I would do anything for my daughters but there are some hurts that parents just cannot fix.  God did not cause this pain to me, my children or my family.  That is not my God.  These terrible things have happened to our innocent babies and it pains God just like it pains me to watch us suffer.  He, like a parent, would love to take my hurt away, but he cannot.  He can offer me his unending love, support and compassion.  He tells me He will be there for me whenever I need Him and that even if I don't need Him, He will be waiting for me to come home.  That is the most I can expect of any parent, heavenly or not. I don't ask God to cure my baby because there is no cure, I don't ask God to give me strength because I know it's within, I ask God to be with me, my unborn child and my family and to carry us when we stumble on our journey.

Hearing the News a Second Time

I picked my husband up from work and we drove the rest of the way to the appointment together.  I asked him what he thought about the ultrasound and again told him that I thought something was really wrong.  I explained how I didn't see amniotic fluid, kidneys or bladder and that I had compared these pictures with the other children's.  He lied to me and told me he thought everything was fine.  Usually when my husband tells me everything will be fine I have one of two reactions: anger at his minimizing the situation or I find it comforting and allow myself to let go of whatever is distressing me.  This time it was like I barely heard his words.  All I could do was pray that everything was okay over and over.  I know why he lied and he knows that I know, that's all that matters.

I knew from the minute my doctor walked into the room that the news was not good.  It was written all over her face.  She said that the radiology report was nearly identical with Wyatt's.  No amniotic fluid, no kidneys, no bladder.  The only difference was the absence of the sacs they had seen on Wyatt's spine.  This baby was perfectly normal, minus those important little organs.  The baby even measured right on track at 19 weeks.  My doctor was very caring as she again explained our options and the increased risks involved with each option for me this time considering my prior history of four c-sections.  Because of the time I already had to process the news one of my biggest concerns was preserving my uterus as much as possible so that I could try to have another baby.  There was no question that our decision would be to carry this baby to term just as we had done with Wyatt and she anticipated as much.

I cannot say enough kind things about the compassion that my doctor has showed me throughout this whole journey, and that day was no exception.  She hugged me and cried alongside me as I sobbed for the baby, myself, my husband and our family.  This was the first blow of many.  Now we would have to again tell our family and friends and perhaps most importantly, our children.  That was the most difficult part for me.  I could process this news, I had been down this path before, I knew what to do and when to do it.  Knowledge empowered me.  But it left me speechless when I contemplated what to do with our children at home.

We decided to tell them that evening.  Mommy & Daddy explained that the baby in Mommy's tummy was missing some parts and would die, most likely after it was born.  We explained that Mommy was okay and that baby was okay for now and that hopefully we would get to watch him/her grow bigger and stronger in Mommy's tummy.  But that when the baby was born it would not get to come home with us.  Mommy & Daddy are sad and will be sad for a long time and that it's okay for them to be sad too and for them to talk with us about how they feel.  Our oldest, about 6 1/2, really understood.  She said she felt very sad for the baby and desperately wants Mommy to have another baby.  It's heartbreaking to feel this loss from her perspective.  We felt it was necessary for them to have the knowledge that Mommy isn't going to be normal Mommy sometimes, that she may cry, she may get angry for no reason and that I may have to go to the hospital earlier than planned.

That evening it occurred to me that I had again not purchased one item for this baby.  My husband bought a new carseat but I hadn't wanted to purchase one yet and really wasn't too interested.  It was like I knew that we wouldn't need it again.

Monday, December 13, 2010

The Second Leg of my Journey

One more child.  It was a much desired and planned pregnancy.  My first trimester was relatively mild, but any drain on my energy and even a mild sickness is amplified when I'm caring for three children under the age of seven!  I determined that this would indeed be our last child.  I no longer had the desire to be pregnant or to go through another c-section.  It seemed so simple.

As I entered the second trimester I was so eager to feel my baby move.  I had felt the girls all move very early, between 13-15 weeks, and I just couldn't wait to feel this little one.  I know I commented more than once about not feeling those kicks.  I surmised that my placenta was probably in the way and blocking them.  I knew the baby was okay because I had been listening to it daily with a fetal doppler (we've done so with each pregnancy since Wyatt). Finally, I started feeling little movements here and there and they were mostly reassuring that things were okay.

However, as we approached the 19 week ultrasound I became very uneasy.  The lack of regular strong kicks, feeling not very big for my 5th pregnancy and just intuition I guess left me uncomfortable.  I also was struggling with not "connecting" with this baby and could not understand why.  I clearly remember taking a walk with my husband and girls the night before our ultrasound, just 5 weeks ago.  I told my husband that I had a bad feeling, that something was wrong with the baby or the pregnancy but I didn't know what it was.  My best guess and fear at the time was placenta previa.  Perhaps my subconscious prevented me from connecting the dots or my memories had faded enough to spare me the pain.

We decided to take our youngest two to the ultrasound early the next morning.  I was so excited for them to see their baby sister or brother.  However, I began worrying right away when they started.  The screen was annoyingly turned away from me so I couldn't see.  But when they turned it toward me things just didn't look right.  Of course, neither of the techs said anything about low amniotic fluid, missing bladder or kidneys.  But, this was my fifth ultrasound and I knew by now what I was looking for and that I did not see those things.  The baby was beautiful and bashful, so we were unable to find out the gender.  I hadn't wanted to know, but my husband did and we had planned on him finding out.  The baby just wasn't moving much and had its precious little privates well concealed that day.

I took the ultrasound photos and my two girls home.  Despite an urgent need to empty my bladder I tore open each of our children's baby books and frantically dug out ultrasound photos.  I knew in a second that this baby had Potter's Syndrome too.  The lack of fluid was unmistakable.  It's literally the difference between grey and black.  I sat at our dining room table and burst into uncontrollable sobs for the little life in my belly and for our family and what we would lose again.  There was so much more to process this time, this time we knew all about Potter's, we knew how the pregnancy would likely go and how it would likely end but now I had three innocent children who I could not protect from the pain of losing this child.  When my mascara  was gone I went to the bathroom and cleaned up without saying a word.

Later that afternoon when my mother-in-law came to watch our girls while we met with my OB/GYN, I said nothing when she asked how it went.  I showed her the ultrasound pictures as happily as I could, got in the car and prepared to hear some of the most awful words any person could ever utter, that my child would die, again.

Wyatt's Potter's Syndrome

We had samples of Wyatt's cord blood tested to determine if there were any chromosomal abnormalities.  The tests came back perfectly normal.  Based on that and Wyatt's near perfect appearance, we were told that he did have Potter's Syndrome and given a 3% or so chance of recurrence.  We never dreamed that it was not a "fluke" or could happen again.  Especially not after having three healthy babies.

My Three Rainbows

Any parent who has lost a  child will hopefully know what my three rainbows refers to, my three children born after the storm of losing a child.  The children who brought light back into my life and love back into my heart.  I have three wonderful little girls who are as much a part of this story as their brother.  Each one very much loved and wanted.  Though we have gone on to have three more children, none have healed the whole in my heart left by their brother's death.  They are not replacements, they are extensions of our love and our family.  Having another child does not assuage the grief of losing one - ever.  Each child is carried within my heart until it too stops beating.  However, having these children has brought more joy to my heart than I could ever imagine.  They have shown me that there is good in the world, there is more than pain and heartache.

We share Wyatt with our girls even though none of them will ever truly know him.  We celebrate his birthday each June with cupcakes and lunch at his gravesite.  This is followed by a balloon release at which each girl gets to send a balloon to her brother.  We decorate his grave for all seasons and holidays.  Each Christmas we place a decorated and lighted little Christmas tree to keep him company.  In the summer he gets fresh flowers.  For his birthday and Christmas, we take a tiny age-appropriate gift to leave with him.  At Christmas we purchase a gift for a boy his age each year and donate it to charity.  Wyatt's pictures hang throughout our house, among pictures of his sisters.  They know his name, his face and images of him in life.  It is the most we can do, but of course will never replace the thought of a seven year old boy running around with his three little sisters.

Soon they will understand, they will feel some of what we felt when we lost Wyatt, but they will feel a different pain which I will not understand this time - the pain of losing a sibling, one that they have seen, touched, loved and spoken to.

Losing Wyatt, Losing God

I mentioned my struggle with God earlier.  It was epic.  I did not give up hope until Wyatt's heart beat for the very last time.  I went to church, I prayed, I gave thanks.  Then it just all came tumbling down.  I would go to church and just sit there and cry.  It became so difficult I just stopped going.  Twenty-five years down the tube just like that.  Only one fragment remained.  I was angry at God but I had to keep believing in Him.  Without Him, I could not find my son, I could not imagine him being taken care of.  I could not hope to join him.  It's a dangerous precipice to question one's faith, but in my experience, a worthwhile journey.

All of the platitudes and religious viewpoints offered to me by people I believed much more knowledgeable and faithful than I was could not withstand my questions.  If you accept just one statement it sounds great and can be rationalized, but when you try to fit that statement into your entire faith and knowledge of God, it was like a bad movie when the hero mysteriously reaches for a not-there-before bazooka to kill the bad guy.  It's just not believable and leaves you with a bad taste in your mouth which sours the whole thing.

My struggle with all of these questions and my search for answers lasted at least five years.  Five years after Wyatt's birth, probably almost to the day, I found my way back to church.  After all that time I still teared up occasionally, but I continued to go.  I volunteered to teach kindergarten faith class and had made some kind of workable peace.  Then my world came crashing down again.

After Wyatt

After Wyatt's birth I was filled with joy, the joy only a new mother can experience.  I was thankful for every breath, touch and snuggle.  I gave thanks for every hour, minute and second of his life, for the absence of the sacs that were supposedly seen on the ultrasound and for the perfect little baby I had been given.

Quickly those feelings evaporated and gave way to anger, even rage.  No one was immune, though most did not know they were a target.  I, first and foremost, was angry at God.  I went from feeling he had answered my prayers by giving me almost 3 hours with my soon to feeling like he stole my baby from my arms.  I felt abandoned and I felt that all of the prayers which had been offered for us and our son, including my own, had been disregarded.  I had heard so much of how God works miracles, yet I had not received mine.  Why others? Why not me?  Those were questions I asked constantly - every time I saw a pregnant woman or a baby.  Why did they get theirs and I didn't get mine?  Being in public was awful.  More than ever I sought to hide my no-longer-pregnant belly.  I took four weeks of maternity leave and devoted it to losing the baby weight as quickly as possible.  This was not for health or vanity purposes, simply to avoid the inevitable questions as to how my baby was doing.  I refused to wear maternity clothes after I had Wyatt and packed most of them away before he was born.  I have never worn maternity clothes after having a child since.  It was just too painful to wear those clothes which were filled with so many memories.

My husband, as a man, wanted to ease the pain in my heart.  My 25th birthday was just weeks after Wyatt's death.  He got me a puppy, a miniature dachshund to be exact.  We named her Beenie, which was a clever play on weiner dog (or at least that's what we believed).  Beenie filled my empty arms, gave me a warm little body to snuggle and love.  However, she quickly turned into the anti-answer, more specifically, a devil dog.  She would literally chase us around the house and nip at our heels, it was not a friendly game.  She angrily escaped her gated confines during the day and proceeded to destroy our house and then punish us for leaving her alone when we got off work.    We had to make the difficult decision to find her a new family which was hopefully a better fit.  It was a lesser pain of losing Wyatt all over again.  However, I knew it was the right choice and have not regretted that one, not often we get to make decisions with no regrets, is it?

Saturday, December 11, 2010

Goodbye Wyatt

We chose to spend some precious time alone with Wyatt to say our final goodbyes and prepare to let him go. At some point and time my husband had changed from his scrubs to regular clothes.  I was finally able to sit up in bed and hold Wyatt a little easier.  I believe we let him go in the early afternoon.  And then we were alone.

Wyatt was born on a Thursday and I left the hospital before noon on Saturday.  Leaving the hospital with empty arms was an indescribable experience, heartbreaking is the closest words can come.  The three flights of stairs up to our quiet apartment had never seemed so long.  Family was there but they didn't know what to say.

We had the funeral on Monday.  Of course, just enough time had elapsed for my breasts to be large swollen and extremely painful.  This was a cruel twist of fate that took my completely by surprise.  I had never given birth and my body simply did not know what happened to my child when he left it.  We went to the funeral home early and were able to spend some time alone with Wyatt.  He looked like a chubby little doll.  Beautiful and at peace.  Though I did not see him differently in life either.  He was dressed in a baby blue Winnie the Pooh onesie.  We wrapped him in a homemade blanket.  We held him for the last time.  I honestly don't remember the funeral much, I sobbed through most or all of it.  I rarely took my eyes off the tiny coffin made by my husband for our precious son.

My brother in law drove my husband, myself and Wyatt to the cemetery.  He rode between us.  To me, the worst day of my life was not the day we received Wyatt's diagnosis or even the day he died.  It was the day we buried him.  There would be no more opportunities to see, touch or hold him.  My thoughts of snuggling his warm little body were replaced by thoughts of him deep below ground, cold and alone.  I will never forget the memory of that little coffin being lowered into the grave.  I worried whether he was okay so often in the weeks and months to follow.  A mother's instinct I suppose.  At least when I carried him I knew he was okay inside of my womb, safe.  I knew he wasn't actually in the cemetery in the sense that he needed me, but I needed him.

My grandparents offered to have a lunch at their house afterwards.  I remember mostly two things, that my mother made my favorite strawberry pretzel dessert and the shock of looking at my ankles and seeing how extremely swollen they had become.  I'm pretty sure I cried myself to sleep for a long time afterwards.

Friday, December 10, 2010

Hello Wyatt

Finally, the big day arrived.  Even though it was early June, it was still pitch dark as we made our way to the hospital that morning.  I clearly remember what I wore that day, a bright pink flowy top with pink Winnie the Pooh knit capri pants (I have worn the same outfit for the birth of all of my children since).  We were surprised by a wonderful balloon bouquet placed in our room by one of my husband's co-workers.  It was no nice to see something cheerful and baby-like first thing.  We began prepping for the c-section.  My mind was a blur but a few things stood out  that morning:  the lab technician took probably close to a half dozen stabs at my arm and hand before finally getting my blood drawn and the anesthesiologist shared with us that he had also lost a baby prior to me entering surgery.  I remember family was there, a few pictures were taken and a few nervous laughs shared.

After getting my spinal,  I only remember waiting waiting for baby to be born, I'm sure it was much quicker than my memory recalls.  Finally we heard "It's a boy!" and tears exploded from my eyes.  Then I heard a sound I had been completely unprepared for - the sound of my baby's voice.  He cried and I will carry those cries with me always.  It never occurred to me that such a thing would be possible because of the underdeveloped lungs.  One of many surprises that morning.  The staff quickly cleaned up little Wyatt, a name chosen by my husband, and handed him to my husband.  We had a priest come into the OR to baptize Wyatt as well as my father and father-in-law who were master photographers that morning.  Every moment captured is a precious reminder of his brief life.

Because of the c-section I was confined to the operating room table for a while after Wyatt's birth and could only look at him and snuggle from the side.  I remember softly caressing his chubby little cheeks.  He was a good sized baby for 37 weeks and for having Potter's Syndrome, six and a half pounds!  He had short fuzzy dark hair, dark eyes and his hands were curled into the cutest little fists.  Appropriate for my little fighter.  His blue hat kept popping off his chubby little head!  We were soon taken back to my hospital room to meet the family gathered there.  Everyone had a chance to cuddle sweet Wyatt.  I don't remember how or when people started leaving, but I know the numbers dwindled and that we were given interludes with just me, my husband and Wyatt in the room.  We took turns taking pictures, both color and black and white.  Pictures of his hands, hair, ears, face.  We kissed and snuggled and told him how much he was loved.  My husband was especially giving that day, he unselfishly let me spend the most time touching and snuggling our child, a kindness I could never forget.

Wyatt was undressed and weighed in the typical hospital bassinet in our room.  It had been raining all morning but when he was placed in the bassinet in front of the window sunlight flowed into the room and landed where he lay.  The chaplain told us she believed this was the moment that his soul left us.  Sure enough, shortly after his heartbeat was gone.

Thursday, December 9, 2010

Preparing to Say Goodbye

While nourishing the life in my womb, we also had to prepare for that life to end.  My husband set about making a tiny casket for the baby.  I crocheted a baby blanket.  Time passed and it soon became clear that a bigger casket would be needed.  So my husband lovingly crafted another tiny, but larger, casket.  We were able to do these things and had accepted the reality of what would soon happen, but even so there were some things I just couldn't bring myself to do.  I could not make funeral arrangements, it was difficult enough to give words to what would happen, but to plan how it would go was more than I could handle.  The days, weeks and even months passed by.  We roamed the cemetery and chose grave plots, for ourselves with our precious baby in between.  How many 24 year olds can say they have a plot in the cemetery?  That time was a gift, time to absorb, prepare and tackle each task individually.

I remember discomfort carrying the baby, it was fairly high up and moved into a transverse position.  When the baby stretched I could literally see my stomach expand left to right and it was very uncomfortable.  I could feel a big round head on the right side of my belly and bottom on the left. When I would wake up in the morning baby would be all bumbled up on whichever side of my stomach was resting on the bed.  Baby remained in a transverse position and with the lack of amniotic fluid that's where it stayed.  Our doctor graciously gave us the opportunity to meet our baby alive by scheduling a c-section for 37 weeks.  We would soon meet our first child.  The night before baby was born was so bittersweet.  I was so excited to meet the precious child I had grown and  loved over the past 37 weeks, a child whose strength and will to live inspired me to continue our journey towards his birth.  But at the same time, I was so sad to let him out knowing that he was only safe inside my womb.  I was also really scared to see the baby knowing that there may be other physical problems.  There was also nerves and fear surrounding having a c-section.  Especially since I had never had major surgery.  With so many unknowns, there was still one certainty, that our home would remain empty.

Carrying to Term

I went to work and sent an email around the office informing everyone my baby was going to die either before or shortly after birth and asked everyone to respect how difficult it was for me.  Blessedly, there were a few who reached out to me and felt free to speak with me about my pregnancy.  I am sure it was difficult and uncomfortable for them.  Words mean everything sometimes.  I knew no one who had gone through what I was going through and my husband could not even relate to what I was experiencing.  He could go to work and perhaps sometimes be able to leave it all behind for a while.  I carried it with me literally.  Every time our child moved from within it filled me with joy and reminded me that our time together was short.  I worried that every kick would be the last and often just sat and prodded my poor belly until I felt movement.  My husband could be out and about by himself without receiving questions about the baby.

I felt that the words "My baby is going to die" were emblazoned on my forehead.  That somehow everyone could see the sadness in my eyes and the burden in my heart.  I saw pregnant bellies and newborn babies everywhere.  I indulged my pregnancy cravings and fed my grief and my belly betrayed my desire to just disappear.  Questions followed about my pregnancy.  Each one was an on the spot decision as to whether to acknowledge the depth of our situation or simply politely answer and question and move on.  I felt as though I had the most rarest and ugliest of diseases.  One that no one wanted to talk about, even if they knew I had it.  I am sure some meant well and hoped not to cause me additional pain. The silence was deafening.

Where my journey began

My journey began eight years ago.  I had just begun married my best friend and started in a career I had worked for since childhood.  We decided it was a perfect time to start our family.  I became pregnant quickly with the first grandchild in our family.  It was an exciting time for all of us and I reveled in the joy of pregnancy and impending motherhood.  I also learned the morning sickness was a great misnomer as I felt sick all day long!  The sickness eventually passed and my stomach began to swell.  Maternity clothes were purchased and my ultrasound was scheduled.  We were thrilled to see the baby, our baby, on the screen.  The technician took great care in examining every inch of our baby. We left the ultrasound department that day with an unsettled feeling but at that time we had no reason to believe anything was wrong.  When we met with my doctor we were told there were some problems with the baby.  The kidneys could not be visualized, nor could the bladder and I had little to no amniotic fluid.  They also saw what appeared to be fluid sacs at the baby's neck and base of its spine.  We were told there were a few possibilities, but neither was compatible with life. Our child either had Trisomy 13 or 18 or Potter's Syndrome.  In our case, it would be Bilateral Renal Angenesis (BRA). Without kidneys, which produce amniotic fluid, the baby's lungs would not develop properly and the baby could not survive outside the womb.  Adding insult to injury, we were told that the baby could die at any time in utero.

The pain I felt at that moment was breathtaking.  Talk about being blindsided.  I had no idea such a condition existed and my faith in modern medicine was such that almost anything could be fixed.  It was beyond devastating to hear those words.  We were given a choice and time to consider it, early termination of the pregnancy or carry the baby as long as possible.  We went home and called our families.  My husband actually did, I could not say those words.  I remember how he cried and hoped to never hear that sorrow from him again.  He carried me that evening.  Next we researched and found little, but enough to confirm what the doctors had told us.  Despite this, I prayed for healing and I clung to hope for our baby.  It was a difficult weekend to pass.

A follow up appointment with a higher level ultrasound was scheduled and that ultrasound confirmed the earlier findings.  We met with a genetic counselor to determine if there was some genetic predisposition that could be ascertained through family history.  There was nothing.  I remember that appointment well, it was on the anniversary of Roe v. Wade, I believe the 30th anniversary.  I know this because it was on the news that evening.  I remember going to Baker's Square for dinner that night and having pie for dessert.  It was also the very first time I felt my baby kick.  We then decided that I would carry the baby as long as possible and that his or her life would be taken by a power higher than ours.  My job was to give the baby life and our job was to prepare to say goodbye when that life ended.

It was at that point I realized I had not purchased one item for my baby yet.  Five months and nothing, I now look on it as a mother's sense that something was not right.  


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