Sunday, December 21, 2014

The Mother's Wail

The Mother's Wail

I see the worry on your face. 
You are praying that your worry is in vain.
The results are back, and I just want to freeze time.
I want to keep you in "the before",
Before the news, before life was changed forever.
The warning shot is given, then the bomb falls
The diagnosis
The gates open, the panic floods and then...
The sound like no other, the agony expressed in voice
The Mother's Wail
I feel it, I want to ease it.
I've been that mother,  I've had the wail.
I sob quietly now as I accompany you on your journey to the depths of despair.
The doctor heals. The doctor brings news of recovery,
but not on this day.
On this day, the doctor cries.
In the morning as you wake and find that your nightmare is still ongoing,
I pray for you.
I hold your pain right over the scar on my own mother's heart.
I want to cry and scream and curse and rage with you at the unfairness.
I want to tell you that you will survive even if a part of you does not.
I want to tell you that you will have joy again even though you can't imagine it right now.
I want you to know that I will ALWAYS remember your child.
the doctor with the scarred heart

Friday, October 26, 2012

Finally Celebrating a Birthday

As the years pass, the anniversary of Jackson's birthday has become less painful and more of an actual celebration of his life.  A big part of the transition comes as Carter (4) has begun to understand birthdays.  He now helps pick the theme of the cake, and we talk about what Jackson might be doing in heaven.  This may be the last year that Carter gets to make the decision alone since Cassidy (14mo) is developing quite an opinion on life.  On what would have been Jackson's first birthday, we started a tradition of planting a tree and reading aloud some memories that we had written down before he died that we wanted to be sure didn't fade away with time.  It is a true testament to the resilience of life as I browse through the birthday pictures of the last 5 years.   Watch as our family grows before your eyes. 

October 26, 2007
If that bump hadn't been in my belly, I'm not sure I could have made it through the year, much less the day.

October 26, 2008
Welcome to the birthday tradition, Carter Cook.  Joy was back in our lives.

October 26, 2009
Carter is old enough to start helping.

October 26, 2010
First year to have a birthday cake in addition to a tree planting at our new house.

October 26, 2011
Welcome to the tradition, Cassidy Cook! 
 I think this year will always stand out for me.  We were just getting ready to go out to plant the tree when I got the call from work that one of my patients was dying.  It was an expected death, but it is never easy when a child is lost.  I raced back to the hospital to be with the family.  It was an extraordinarily difficult day, but it's just another way that Jackson's life has been able to help me know how to comfort another grieving family.

October 26, 2012
Birthday celebration, complete with a hex bug cake of Carter's choosing.  We aren't sure if there are hex bugs in heaven, but if there are, Carter thinks Jackson probably likes them as much as he does. 
Happy, Happy Birthday to my precious angel! 

Monday, April 30, 2012

Making a Family

I've recently gotten involved in the legislative process in Oklahoma after a new personhood bill has been up for debate.  I've been conflicted in this issue as it is mainly touted as an anti-abortion bill, stating that life begins at conception and grants all the rights of citizenship to a fertilized egg.  It's the consequences that this statement has on assisted reproduction that have inspired me to get involved.  As someone who has faced enormous challenges in trying to create a family, the idea of supporting the termination of healthy pregnancies is unthinkable.  However, I have also always had difficulty with the notion of government dictating the availability of medical interventions.  Regardless of stance on these issues, I wanted to share the story of how my family came to be.  I hope that it can provide insight into this debate, hope for those struggling and grattitude for those blessed with healthy kids.

     During my first pregnancy, when our son Jackson was diagnosed with a chromosomal translocation, we discovered that we carried the mutation and our future kids might also be affected.  Initially, we didn't know exactly what the odds were of passing it on.  After living through the struggles that Jackson had and ultimately facing his death, we began to pursue our options for ensuring that our future children wouldn't face the same disease.  Our high risk OB introduced us to the concept of preimplantation genetic diagnosis.  Through in vitro fertilization, one cell is biopsied from an 8 cell embryo and the DNA is tested for specific diseases.  Because, the test is done on only one cell, the number of tests that can be done is limited to those for which the embryo is at risk.  At the time, the closest reproductive clinic offering this procedure was 3 hours away in Bedford, TX.  The genetic testing itself was only offered in Chicago, but the Bedford clinic could partner with the Chicago facility for the test.  It was through the interview process with Chicago that we learned we actually had a 75% chance of each of our future children being affected as Jackson was.  We completed our loads of paperwork and prepared our bank account for a massive hit, then began the process.  I was still completing my pediatric residency at the time, was in an emotionally sensitive state and wasn't ready to publicize our newest adventure.  Trying to keep this process a secret, travel several times per month to Bedford for appointments, run to the local reproductive clinic for lab draws and ultrasounds multiple times per week and get daily injections with a resident's schedule was quite a trick.   Several times while on call in the hospital, my husband would come up to "bring me dinner", when in fact, he was giving me shots in the call room.

      We finally made it to the day of egg retrieval.  They were able to harvest 30 eggs, of which, 27 successfully fertilized.  My mother was waiting in the wings and took on the task of flying our 27 embryos in a portable incubator to Chicago for testing.  As predicted, 21 of the embryos had the same translocation that took Jackson's life.  Six healthy embryos made the journey back from Chicago with Nana.  One did not survive the testing and transport, which made us realize how utterly amazing it is that any of them survive at all.  The following day, one embryo was transferred to me and the rest were frozen.  Then, we wait....
     Against advice, I took a home pregnancy test which was POSITIVE!  My blood test later confirmed this and 38 weeks later, healthy, 7lb 13oz Carter made his arrival.  Two days later, I was finally able to bring a baby home.  After some initial paranoia that something bad could happen to my perfect baby boy, I was able to relax and let him just be a normal kid (for the most part).

     Fast forward two and a half years, and the baby bug is creeping back in.  We decided it was time to try for another baby.  We signed our paperwork, paid our money, started the shots then came to an unusual predicament.  Because the genetic testing that had been done on the embryos also included sex chromosomes, we knew the gender of all of our embryos.  This practice has changed and is no longer revealed to families in our particular clinic.  We had the option to choose which embryo to use next.  After much debate, we picked the one with the best rating.  (Embryos are rated based on microscopic appearance).  It was a boy, whom we named Wyatt Kingston Cook.  The transfer went well, and my home pregnancy test was positive.  The nurse from the clinic called with my blood test and said it was also positive.  I wasn't surprised, since our first transfer had gone so well and our issue really wasn't infertility.  Two days later, I had my blood drawn again to check that the hormone level was rising appropriately.   I had just sent my husband out for pizza when the nurse called with the results.  "I'm afraid the level hasn't risen.  This is most likely a biochemical pregnancy."  What!?  I was completely taken off guard.  I assumed positive is positive.  A biochemical pregnancy is one in which your blood hcg levels are elevated, but no pregnancy is confirmed on ultrasound.  Call it what you will, I felt like I had miscarried my precious son.  We had imagined our two boys playing, fighting, being coached by Dad.  Carter was sitting on the couch with me when I got off the phone.  Through my sobbing, this precious two-year-old boy was stroking my hair, saying "You're OK, Mommy.  You're OK."  Over then next weeks, we pulled it together enough to try again.
     Our next frozen embryo transfer cycle was approached more cautiously.  Out of guilt and concern that I had done something wrong the first time, I sat on the couch and worked on needle point.  For those who know me, this was quite a change from the lifting, sawing, and building that I like to do.  We didn't name this embryo, but we knew it was our first daughter.  After the transfer, I started taking two home pregnancy tests per day and was obsessing over how dark the lines were.  Positive, positive, positive.  My blood test was also positive, but this wasn't the reassurance I needed.  The second test was done and the phone call with results confirmed the worst.  Another lost pregnancy. 
     Up until this point, I had insisted on only transferring one embryo at a time.  After our experience with Jackson and my fear of ending up back in the NICU with premature twins, I wanted to avoid any chance of complications or health problems.  However, after the two cycles that were unsuccessful, I was ready to increase our chances, or at least use our last two frozen embryos so we could move on to another fresh cycle, since that was what worked with Carter.    We once again signed our papers, paid our money, took the shots and then transferred two female embryos.  My home tests were positive; REALLY positive.  The lines just kept getting darker.  My blood test was crazy positive.  The repeat test was more than doubled from the first level.  I couldn't wait for the ultrasound to confirm my notions that we would be buying a van to accommodate our twin baby girls.   The day finally came, and the ultrasound showed two sacs but only one baby.  It was bittersweet to know what could have been, but also to know that we would finally get a precious baby girl.  After some initial complications, we were able to settle into another normal, healthy pregnancy.  37 weeks later, healthy, 8lb Cassidy made her arrival.

   After traveling this journey, I have been amazed at how many people have also had trouble with infertility and miscarriage.  It's often not discussed  because it can be so painful and isolating.  When you desperately want to be pregnant, all you can see are pregnant women surrounding you.  You overhear women talking about "accidentally" getting pregnant, and you want to scream.  I hope that in sharing my story, other women are encouraged to confide in each other for support.  I hope that others feel less isolated and less broken.  I hope that women are encouraged to seek help, whether medically or emotionally.  I also hope, that everyone who wants children can have to opportunity to use the resources available to acheive that goal.  My personal faith tells me that God works through medicine and science to bring miraculous blessings. 

Sunday, February 12, 2012

This may be the only post this poor little blog ever gets, but I've wanted to share this story for quite some time and felt like this would be a good way to do it.  I know when I see vague references to a personal tragedy on Facebook, I always want to know the whole story, but feel that it's impolite or insensitive to ask.  So, no need to ask.  I want to share.  Here is my story about Jackson:

During my second year of pediatric residency, I was rounding in the newborn nursery when I got a call from my husband, C.W.  His mother was having surgery that morning, and they had unexpectedly found small tumors spread throughout her abdomen.  While driving to the hospital, I called my own mother and explained the situation through my tears.  We feared the worst, and my recurring feeling was guilt for having not had a much desired grandchild yet.  My mother-in-law likes to claim credit for our relationship in the first place.  She had picked me out at a football party while I was in high school and told my now husband that he needed to ask me out.  It didn't take us long to figure out that this was a forever kind of love.  It didn't take her long to start hinting for grandchildren.  As the days went on, we learned that her diagnosis was carcinoid tumors.  This meant a much better prognosis than other kinds of cancer, but we still knew each day was precious.  We adjusted our plans to wait until after residency for kids and were quickly able to get pregnant. 

The pregnancy went on without a hitch until our 20 week ultrasound.  We arrived, expecting the news of the day to be whether we would be shopping for blue or pink.  When the scanning took longer than expected, I started to feel the prickle of worry creeping in.  The tech said it would just be a few minutes while the doctor looked over the images.  When the doctor finally came in, he continued the scanning in silence.  I mentioned to him that I was a pediatric resident and was thinking of all the horrible things that could be wrong, "so please just tell me it's fine and go on scanning."  He didn't say it was fine.  He told us that he saw several "soft signs" to raise concern for a chromosomal abnormality.  He gave us the option to follow up later or proceed with an amniocentesis.  I never thought I would choose to have this test, but the unknown was too much to bear.  We drove home in a fog and found ourselves laying on our bed crying without words.  It was to be the first of many bad news days.

A couple of days later, on my birthday, I got the call with initial results from the amniocentesis that were NORMAL!!  We were so relieved and thought that horrible chapter was behind us.  The final results would come in a few more days, but "those are rarely abnormal if the initial test is good".  We continued planning our blue and yellow nursery and shopping for footballs.

I had returned to work and was finishing up some notes at the computer in our resident lounge.  My phone rang, and it was the high risk OB who had done the ultrasound.  He had the results of the amniocentesis and they showed an unbalanced chromosomal translocation.  We didn't yet know which chromosomes were involved or what this meant for the baby.  The walls started closing in.  The sobs were uncontrollable.  I stumbled to the Chief Resident's office to tell them I needed to leave.  I called my husband out of class to have him come pick me up.  We headed home for our second evening of crying without words.

We returned to the high risk OB office the following day to have our blood drawn to see if one of us was a carrier of the translocation.  Every visit seemed to bring more bad news.  Our results showed that we did carry a balanced translocation which only causes problems when it's inherited in an unbalanced way. (The baby had a little extra of one chromosome and not enough of another).  That exact translocation was not documented anywhere in the medical literature, so we really didn't know what to expect.  The bits of information we did have indicated that he would likely have a syndrome that caused body overgrowth, airway problems, blood sugar problems, increased risk for cancer, and the part I couldn't say without tears, mental retardation.  I found myself wishing he could be missing a limb, anything but that last part.  I think it was the overwhelming aspect of not knowing what we could really expect; not even knowing if he would look like other "normal" babies.  We didn't know if we could ever have kids who wouldn't be affected with this translocation.

The days and weeks crept by.  I felt surrounded by other pregnant friends who were expecting healthy, happy babies.  My own belly was growing at an abnormal pace due to the overgrowth syndrome and an excess of fluid.  I felt like everything about me was now "abnormal".  All through residency I had struggled with the issue of bad things happening to good people.  Why did it seem that the nicest families ended up with the worst prognoses?  Now it was happening to me.  The emotional and physical stress finally got the best of me and at 32 weeks gestation, I called my residency program director to say I needed to start my maternity leave.  Baby Jackson must have been listening, because later that night, my water broke.  I remember saying over and over again, "he's not ready yet."  Maybe it was me who wasn't ready, but I didn't get a choice in that matter.
After trying in vain to stop labor, Jackson William Cook was born on October 26, 2006.  APGARs were 0 and 1.  If you don't know about APGAR scores, that basically means he was blue, not breathing and his heart was not beating.  Two of my friends from residency, a nurse practitioner and one of my attendings were standing by and began resuscitating him.  I watched in disbelief as they did chest compressions and intubated my child.   I held him briefly, and they whisked him away to the NICU.  I sent CW with him with instructions to give them consent for whatever they needed to do.  Hours later, after he was all settled in, I was wheeled up to the NICU to see him.  It is with horrible guilt that I admit we walked right past our own child, not knowing our baby was the one covered in tubes and wires. 

The days in the NICU were full of highs and lows.  We initially thought we had gotten lucky because he seemed to be much less affected than we expected.  Unfortunately as the weeks and months passed, we realized our luck didn't last.  After two smaller surgeries for his airway had failed, and he was unable to stay off of the ventilator, I hesitantly signed consent for my baby to get a tracheostomy.  For me, it was probably most upsetting, because it carried a stigma of a child who would never be "normal".   However, we knew he needed it and hoped it would allow us to finally bring him home.  We had spent the first month of his life sleeping in a resident call room in the hospital because we couldn't bear to leave without him.  On Thanksgiving, we were finally convinced to start coming home at night while still spending all of our days in the NICU. 

By Christmas, it was clear that his progress was stopping.  He gradually began having complications with every major organ system.  We had consults from cardiology, GI, infectious disease, pulmonology, urology, nephrology, pediatric surgery, endocrinology, genetics, ENT and oncology.  He stopped tolerating feedings, his kidneys began to fail, he began having seizures, and worst of all, he would scream in pain for most of the day.  After six trips to the operating room and numerous painful and discouraging discussions with the doctors taking care of him, we began to realize that we weren't adding any quality to his life by prolonging it. It felt like an out of body experience when I signed his "Do Not Resuscitate" orders.  Our families continued to be our rock of support through the next days as we waited for the end.  As he continued in his suffering, we were forced to make a decision we had at one time felt was unthinkable.  I held my son in my arms with my family encircling us.  My dad read scripture, then I gave permission for them to stop the ventilator.  I whispered in his ear, "It's going to be so much better, I promise." as my precious child left us.

Jackson William Cook lived on this earth for 110 days.  He changed my life forever.  He made me a better mother, doctor, person.  He was an organ and tissue donor. He made me value and admire the differences in us all.  He made me realize "normal" is not such an ideal.  He taught me that every day is precious and nothing is guaranteed.  His translocation has now been documented and may be able to help other families who are searching for information like we were.  I have a whole new perspective on heaven and can't wait to hold him and kiss his mommy spot that I claimed on his left cheek that is mine alone.