A person’s a person,
no matter how small”
– Dr Seuss
Today, October 15, 2019, we pause to remember the stars of our soul that were extinguished far too early.
To the parents who are missing their babies today and always, The Band sends our love and prayers.
To our babies, the babies who never got to experience the joys of Earth, whose lives were cut very short, we miss you.
We miss you. More than anyone can ever know. We wish we could have one more moment – one single moment – with you, as we can’t have a lifetime.
Today, we honor the short lives of some of the brightest souls, souls that have touched many and have taught us to cherish all of life’s moments.
To our babies who we carry in our hearts, instead of our arms, we will never forget you.
Band Back Together’s Wall of Remembrance:
- Mary Katerina, miscarriage March 13, 2008.
- September 23, 2010, miscarriage.
Amanda and John’s Babies:
- Juliana, July 2008, miscarriage.
- Charlie, November 2009, miscarriage.
- Samantha, March 2010, miscarriage.
- Her 3 Littles, December 23, 2010, missed miscarriage/June 2011, miscarriage/December 6, 2011, Autosomal Recessive Polycysitic Kidney Disease
Another Becky’s Baby:
- Baby Savu, August 2004 missed miscarriage between 3rd and 4th month.
- Baby Garrett, September 13 2012, Miscarriage
Aunt Becky’s Babies:
- February, 2008, Baby 1, miscarriage.
- March, 2008, Baby 2, miscarriage.
- August 2017 ,Tuesday, miscarriage
- February 15, 2000, miscarriage.
- Pregnant October 2011, unpregnant January 2012, ectopic pregnancy.
- July 15, 2008, miscarriage.
- June 13, 2005, miscarriage.
Baby Noah Walter
- January 2012, miscarriage.
- Malcolm, January 2008, miscarriage.
- Ophelia, April 2009, miscarriage.
- Caden, miscarriage, May 1989.
- Aubrey, miscarriage, December 1993.
- Kaycie, miscarriage, 6/14/2011.
- Baby Jones #1, February 2007, miscarriage at 12 weeks due to blighted ovum (Empty Gestational Sac).
- Michelle, November 1991, miscarriage
- 2 babies, miscarried in 1994 and 1999.
Elsie’s Ten Possibilities:
- Nine Embies, 2008
- Lola, 2011
- Baby 1, September 2006, miscarriage.
- Baby 2, January 2007, miscarriage.
- Baby Girl 1, December 2008, late miscarriage.
- Baby Girl 2, August 17, 2009, born still at 18 weeks.
- March 2005, miscarriage at 13 weeks.
- Biscuit, July 18, 2012, miscarriage.
- Unnamed baby, 6w1d, September 18, 2010, miscarriage.
- Unnamed baby, 6w2d, June 22, 2011, miscarriage.
- Unnamed baby, 5w, August 15, 2011, miscarriage.
- Pregnant in December, 2007. Unpregnant by February, 2008.
- Forget Me Not #1, February 2009, miscarriage.
- Forget Me Not #2, January 2012, miscarriage.
- Baby M, September 10, 2011, miscarriage.
- Stella, February 13, 2011, miscarriage.
- June 8, 2008, early miscarriage.
- November 2007, early miscarriage
- November 2011, early miscarriage
Justine and Boo’s Baby:
Kallay and Ryan’s Baby:
- Baby C lost to a partial miscarriage, May 17, 2010. Baby C is survived by twin sisters, Lily and Molly who were born on December 7, 2010.
- Mari Elizabeth, September 2003, miscarriage
- Noah Douglas, October 2004, miscarriage.
- Twin Angels, July 2006, miscarriages.
- Rebecca, June 3, 1995, miscarriage.
- Baby Sluiter A, April 2007, miscarriage.
- Baby Sluiter B, May 2008, miscarriage.
- Baby 1, September 2009, miscarriage.
- Baby 2, May 2010, miscarriage.
- Lola, October 9, 2012, miscarriage.
Kelly and Brad’s daughter:
- Lily Catherine, February 18, 2010, miscarriage.
- Baby 1, April 2003, miscarriage.
- Baby 2, October 2004, miscarriage.
- Baby 3, February 2006, miscarriage.
Kendra Pocock’s Baby:
- Baby JJ Pocock, July 13 2012, Miscarriage/Ectopic Pregnancy
- Baby, October 1996, miscarriage.
- Baby One, son late term miscarriage at 15 weeks.
- Baby Two, second-trimester miscarriage at 14 weeks.
- Baby Three: miscarriage, 11 weeks.
- Baby Four: miscarriage, 13 weeks
- Baby Five, late miscarriage, 16 weeks.
- Eva, miscarriage
- 7 other babies lost through miscarriage due to luteal phase disorder and clotting disorder.
L. Moses’ Baby:
- Baby Moses, July 17, 2008, ectopic pregnancy
Lara and Brandon’s Son:
Lauren C’s Angels:
- Baby, August 27, 2007, miscarriage.
- Baby Boy, January 13, 2011, miscarriage.
- Baby May 9, 2011, miscarriage.
- Cameron, born and died May 22, 2009 at 10 weeks.
- Jeremiah Oliver and Jillian Olivia, twin babies. Second trimester loss July 9, 2010 and July 14, 2010 respectively.
- July 1994, ectopic pregnancy resulting in emergency surgery.
- Natasha Anastasia, September 7, 2011, miscarriage.
- Baby B #3, September 1, 2011, miscarriage at 5 weeks.
Marlowe Corrine, September 19, 2006, early miscarriage.
- June 11, 2011, miscarriage
- Baby Angel, February 8, 1998, blighted ovum/miscarriage
- Albert Eugene, October 31, 2000, miscarriage
Mindy’s Three Angels:
- Angel One, September 9, 2005, miscarriage.
- Angel Two, July 17, 2007, miscarriage.
- Angel Three, September 25, 2010, miscarriage.
- Peanut, August 7, 2011, miscarriage.
- Baby One, February 2, 2011, miscarriage.
- Hosanna Joy, June 18, 2011, early miscarriage.
- Cody Ryan-Price Grodan, February 14, 2012, miscarriage, 12 weeks.
Nicole and Jake’s baby:
- Baby One, September 19, 2011, miscarriage.
Rachel and Jesse:
- Babies due Aug 2008 and November 2010. Both lost to miscarriage.
- Alivia Mason, March 21, 2012, miscarriage.
- First Angel April, 2013, miscarriage
- Second Angel July 2013 miscarriage
- Isaac Ephraim, miscarriage August 2006.
- Isaiah Jeremiah, miscarriage January 2007.
- Ella Alicea, ectopic pregnancy June 2009.
- September 2006, miscarriage.
- April 12, 2002, miscarriage.
- September 3, 2008, miscarriage.
- Baby Bun Bun, April 2017, miscarriage
- Baby #3, June 2000, miscarriage from a blighted ovum.
- Athena Rose Moore, Girl Twin B
- Grace, 10/29/2001, miscarriage
- October 1990, miscarriage.
- September, 2002, miscarriage
- July 17, miscarriage
- September 25. miscarriages.
- 2008, Little Soul 1, 2008, ectopic pregnancy.
- 2009, Little Soul 2, 2009, ectopic pregnancy.
- Sean Michael, April 14, 1987, miscarriage.
- Nolan “Shepherd,” stillborn at 17 weeks on September 15, 2009.
- Madeleine Rose, stillborn July 7, 2009 due to incompetent cervix and uterine infection.
- Orion, stillborn May 8, 2004
- Benjamin, September 4, 2012, stillbirth.
- Bella Rose, stillborn on September 9, 2009.
- Emerson Allen Behrends, July 10, 2001, stillborn.
- Jonathan Edward, June 4, 1992, stillborn.
Debbie And Jeff’s Daughter:
- Chloe Eva, September 12, 2008, stillbirth.
Heather and David’s Daughter:
- Clara Edith, July 1, 2012, Stillbirth at 42 weeks, 3 days due to meconium aspiration and uterine infection.
Jill and Mark’s Baby:
- Haven, November 26, 2003, stillborn at 38 weeks gestation
- Ruth, January 3, 2013, stillbirth
- Cullen Liam, born still September 11, 2010.
Lilla and Gareth’s daughter:
- Pippa, born still on February 13, 2011 from listeria infection.
- Stillborn, born still 2017
- Kaitlyn Grace, stillborn, born still, May 13, 1995.
Louise and Joseph’s Baby:
- Alice Mathelin, born still on February 25, 2011, at 36 weeks and 5 days from Abruptio Placentae
Martha’s Twin Boys:
- Owen died March 8, 2008 because his cord wasn’t properly attached to the placenta.
- Joshua died one month later, April 6, 2008 because he couldn’t live without his brother. Both were born still on April 8, 2008.
- Summer Lily, born still March 30, 2011.
- Jordan Ala, stillborn on November 13, 2006.
- Nicholas Aaron and Nathan Alexander, June 9, 2000, stillbirth
- Sam, 1997, intrauterine fetal demise
- Audrey Elizabeth, August 7, 1998, born still.
Selah Mae: born January 22, 2002, stillborn.
- Carter Austin Ross, March 18, 2006, stillbirth due to an umbilical cord anomaly.
- Isabella-Rose Elizabeth, October 12, 2009, stillbirth.
Amy and James’s Babies:
- Jacob Bennett born and died on July 11, 2007 due to premature rupture of membranes (PROM).
- Samantha Lauren born August 16, 2011 at 23.5 weeks passed away September 17th due to extreme prematurity and fungal meningitis.
Baby Helen: Born July, 1993. Passed from prematurity.
- Christopher Robin Cote: Born September 25, 2009. Stillborn due to premature rupture of membranes and incompetent cervix.
- Emily, prematurity born 19w 5 days – was too small for the equipment.
- Jellybean, born at 5:20 April 15th, 2009; and passed just four short hours later in her arms.
Heather and Aaron’s Son:
- Aodin R. Hurd, October 7, 2007, born still due to premature rupture of the membranes.
- Kevin William, prematurity, 2005
- Baby S, March 2008, Miscarriage
- Evie, December 14, 2009, Triplet Prematurity
- Jack, December 22, 2009, Triplet Stillbirth due to Prematurity
- Will, January 13, 2010, Triplet Prematurity
- Baby M, May 2010, Miscarriage
Kristin’s Baby (Mama KK):
- Ariel Grace, born on July 28, 2009 at 18 weeks 5 days. Lived 5 minutes.
- Ayla and Juliet, October 20, 2009 at 20 weeks.
- Bayli and Thomas on June 8, 2011 at 21 weeks 2 days.
Matthew Chase Sims:
- April 25th, 2006 due to prematurity.
- Born at 21 weeks in June 2011 due to a bacterial infection, lived for 30 minutes.
- Samuel, August 8, 2001, prematurity.
- Coleman Parker Garibay, September 14, 2005, lost at 6 months gestation and passed from prematurity.
- Reya, September 18 2011, Prematurity due to extreme Pre-eclempsia
- Mikel Azariah and Willamina Azaria born August 12, 2019.
- Mikel was stillborn,
- Willamina was premature at 22 weeks 6 days
S & T’s Son:
- William, November 2, 2013, 24 weeks, 3 days, prematurity
Collin, complications from prematurity, 2009
- Erik Richard, July 29, 1981, prematurity.
Aaron and Kristine’s Son:
- Luke Ervin Seitz, born July 21, 2011 with Hypoplastic Left Heart Syndrome, and passed on June 28, 2011.
- Mateo, Anthony, and Ian born on May 6, 2008 at 23 weeks and 3 days.
- Mateo was born still.
- Anthony passed away from Transposition of the Great Vessels.
- Ian passed away after a short stay in the NICU.
- Nathaniel James, August 24, 2001 – August 29, 2001, Citrullinemia
- David Henry, May 11, 2010 – January 24, 2011, Citrullinemia, passed away after becoming sick post liver transplant
Baby Khalil, born August 14, 2009, stillborn, born still from birth defects.
- Kyle William Kober July 22, 1994 due to Hypoplastic left ventricle syndrome
- Ethan Connor Brockwell, May 3, 2006 – August 17, 2006. Born with Hypoplastic Left Heart Syndrome.
Christopher: November 4, 1979, due to pulmonary atresia, a congenital heart defect.
- Aidan, born with brain malformation on December 16, 2008 and passed on December 19, 2008.
Cora Mae McCormick:
- November 30, 2009 to December 6, 2009 from a congenital heart defect.
- Shane Michael, born October 10, 1971 and died October 11, 1971 from heart complications before his mother could wake from anesthesia. She never saw or held him.
- Brianna Elizabeth, born January 29, 1998 and died March 7, 1998 from a heart defect.
- Seth Douglas Bonnett, Our Little “Tough guy”, March 27, 2008 – October 12, 2008. Died from Hypoplastic Left Heart Syndrome.
- Austin Skylar Gregory, born July 3, 2005 and gained his wings August 29, 2005 from Multiple Complex Congenital Heart Defects.
- Corbin Walker, born February 20, 2011 and died May 17, 2011 from heart defects brought on by Williams Syndrome.
- Chloe Walker, born November 29, 2000 and died June 4, 2001 from multiple congenital heart defects and heterotaxy.
- Starbaby, born still February 2008 due to Trisomy 18.
- Matthew Connor – February 26, 2005, born at 26 weeks, passed from Necrotizing Enterocolitis (NEC).
- Reed Allyvion Miners, passed away July 5th 2003 at one hour old from Primary Myocardial Disease, a congenital heart defect.
- Nathaniel, born August 24, 2001 and died August 29, 2001 from an undiagnosed metabolic disorder.
- David, born May 11, 2010 and Died January 24, 2011 from a myriad of complications resulting from a liver transplant.
- Leia Sky Williams, born October 6, 2011, passed away from Group Beta Strep.
Baby Kash Michael:
- Born June 3, 2011 and died September 28, 2011.
Carey’s Triplet Sons:
- Rudyard, Desmond, and Oscar, June 4th, 2011, born at 22 weeks due to of E. coli infection.
- Nicholas and Zachary, October 27th, 2004.
Heather and Joe’s Twins:
- Jonathan Michael and Samuel Joseph, identical twins born alive and died on May 6, 2004 from extreme prematurity and twin-to-twin transfusion.
- Charlie: Born May 21, 2003 and died June 14, 2003 from late-onset Group B Strep.
- Will, born (today) October 15, 2002 and died on September 16, 2003 from complications of late-onset Group B Strep.
- Malakai Zachary born still March 10, 2007 due to Anencephaly.
- Five more angels, July, 2007 – May, 2010. Miscarriages.
- Catherine Grace, born August 10, 2012, passed August 12, 2012, due to prematurity brought on by HELLP syndrome.
- Kaitlyn Grace, born sleeping at 38 weeks on Saturday, May 13th, 1995. Died from a true knot in her umbilical cord.
Matt and Lauren’s Baby:
- Isla, born 14 weeks premature on August 23, 2011 and died on October 10, 2011.
- Mina Kathryn, born February 18, 2009, died February 24, 2009, due to complications with her PICC line.
- Baby R, May 24, 1998, Medicine Administration by RN who didn’t know or ask.
- Matthew Conner Webb, born January 11, 2005 and died February 26, 2005. He was born at 26 weeks and faced many obstacles in his short life.
- Ziggy Ann born sleeping on January 21, 2009.
- Frank born sleeping May 21, 2010.
- Liberty Ann born March 30, 2011 and died on April 19, 2011.
Ally’s Son: Collin
- Collin: born on August 9th, 2008. He passed away 30 minutes later from cardiac arrest after an emergency c-section due to a placental abruption.
- Nicholas, born December 14, 2005, died April 19, 2006 from SIDS.
- Max Corrigan, born November 14, 1987 and relinquished to adoption on November 18, 1987.
- Brianna Ann 3/19/2018, car accident – donated the gift of life to 5 people through organ donation
- Bryce Philip born May 26, 2009 and died September 1, 2009 due to SIDS
- Ashton Karol, stillborn on February 24, 2010 at 17 weeks.
- Addison Leah, June 13, 2008, accidental death.
Jessica and Mark’s Daughter:
- Hadley Jane, born October 9, 2001 and died October 11, 2007.
- Halsey Douglas Dukes December 31, 2016, Halsey passed from hemophaygocytic lymphohistiocytosis (HLH)
- Halcyon Grayson Dukes was born September 1, 2011 Halcyon failed to develop after 9 weeks
- Jake, born August 14, 2005 died August 27, 2005 due to prematurity and hydrops.
- Sawyer, born November 17, 2009 died December 26, 2009. His cause of death has not been determined because he is part of a study at the Mayo clinic for heart arrhythmias – SIUDS (unexplained sudden infant death)
- Cullen, September 11, 2010, stillbirth.
- Brian Vitale, accidental death, September 4, 2007 – June 3, 2010. We miss him more and more each day.
- Patrick, born April 10, 1977, Adoption
- Sophia Lu Boudreau, born December 21, 2006 and died October 9, 2007 from SIDS.
Rebecca and TJ’s son:
- Rafe Theobald Calvert, born on October 11th, 2009 at 26 weeks. Spent 3 months in the NICU and underwent an intestinal obstruction repair. He was released on January 11th, 2010 and we brought him home for 6 weeks. He passed away at 4 and a half months old from SIDS on February 25th, 2010.
The Stamm’s Daughter:
- Adrienne Mae, May 7, 2006, Sudden Infant Death Syndrome.
- Nathan Michael King, died from SIDS November 2008.
- Kendra, April 23, 2005 to March 24, 2006. Died from Jacobsen Syndrome.
Chance, July 25, 2014, homicide
You are my sunshine
My son has taught me how to live, love and grow in ways I could have never understood before. His very being keeps me going and gives me purpose. It is a love like no other.
My only sunshine
After nearly three years of trying to get pregnant, (including an ectopic pregnancy, surgery and infertility) in June of 2009 I successfully conceived. I didn’t allow myself to get too attached while I went for weekly blood draws and ultrasounds to monitor my early pregnancy.
As the first trimester passed and we saw our tiny bean grow into a perfectly formed tiny baby, the hope in me stirred and I began to let myself feel joy. Anxiety continued, however, as I underwent frequent fetal echocardiograms to evaluate the baby for a heart condition he was at risk of developing.
The second trimester came and went and his heart remained perfect; we were in the clear.
In my third trimester, at 32 weeks, I started having contractions, followed two hospital visits for pre-term labor. At home, I remained on bedrest, and made it to the 37th week.
My labor was quick and my beautiful baby boy was born perfect and healthy at 6 lb., 1 oz.
I felt the biggest relief in my life when I saw my newborn baby. This joy quickly dissolved when the OB began the repairs. I began feeling very funny. I was trying to communicate how weird I was feeling when I found I was unable to speak. Ringing in my ears drowned out the sounds and I slipped into unconsciousness.
This is it, I thought. My baby was born healthy, but I’m paying for it by dying in childbirth.
The next thing I knew I woke up on the Mother-Baby Unit. The nurses there cheerfully told me I had experienced lidocaine toxicity and my baby was with my husband in the nursery. I ached to see his face and hold his perfect body. When they returned, I instantly felt a jolt of joy and energy as I acquainted myself with my new family.
Two days later, we were discharged and went home as a new family of three. Our families had camped out at our house but we sent them home to have the space to figure out what we were doing.
The next few days were quiet but things did not feel right with the baby. I couldn’t shake the feeling that something was wrong with him. My milk came in late and my son became dehydrated and difficult to arouse.
After that crisis resolved, we received a concerned call from the pediatrician. The results from A’s metabolic screen were positive for a rare but potentially fatal disease. They cautioned us that there are many cases of false positives, but I went into panic mode. We stayed on alert night and day to watch him breathe. We had to wait for a week for the news that it was an error. He was fine.
You make me happy when skies are grey
The weeks after were full of relief, bliss and love.
I managed through the marathon feedings and fell more in love with my son each day. Parenting seemed to come naturally to my husband. I finally had everything I dreamed of. Then at 11 weeks, A did a remarkable thing: he slept through the night.
Usually a cause for celebration, this milestone marked the beginning of my downfall. I felt as though this gift I had dreamed of for so long was a mirage and could be taken from me at any moment. The lines between fear and reality became blurred.
First, I stopped being able to sleep. I felt the need to rest my hand on the baby’s chest to feel the reassuring rise and fall. I started having the most disturbing images in my head. These horrifying images tortured me relentlessly. I felt constantly nervous and on edge. I felt so agitated I couldn’t keep my body still. When I lay in bed, my legs wouldn’t stop moving.
I had the most intense feeling that sometime terrible was about to happen to my son, A. Something that I had to stop. Soon, I was having stomach problems and I couldn’t keep anything down. I started going days straight without sleeping. I stopped eating solid foods. I lost twenty pounds in a month. I became weak and fragile.
The images I’d seen before were now coupled with horrifying phrases in my head. They all involved seeing my baby hurt. I had urges to do things like bang my head on the shower wall to stop them. These urges were like the most intense itch you know you should never scratch. I felt if I didn’t give in to them, I would jump out of my skin or explode.
During the day, I had panic attacks where I felt like I was dying; my arms went numb, my heart raced, I became sick to my stomach and felt paralyzed.
At night; the baby and my husband tucked safely in bed, I started having these urges to disappear. I wondered how fast I could pack everything up and drive off before they awoke. I thought if I disappeared, my baby would be able to grow and thrive and would be better off without me.
My husband did not understand what was going on and became very angry. We fought constantly. I had to ask him to stay home from work or leave work numerous times because I didn’t feel safe alone with the baby.
Soon, I found myself unable to get out of bed. I wondered if I was dying or losing my mind. I didn’t want to live anymore. I pictured milestones in A’s life without me present. I became obsessed with planning A’s birthday party because I had the distinct feeling that I wouldn’t be around by then. The day came when I couldn’t take another second.
That was when I reached out to my Mom.
You’ll never know, dear, how much I love you
I’d always wanted to get better. For my son, for myself and for my family.
I didn’t want anyone to know what a bad mother I was so I tried to stop visitors and kept phone calls brief. I’d been refusing to take the medications I needed because they were not compatible with nursing. Having to suddenly wean my baby was like a final blow of failure to me.
After my urgent phone call to my Mom, she left work in the middle of the day without packing a thing, got on the highway and talked to me on the phone until she arrived three hours later.
She took me to the midwife, who sent me to the ER to be admitted. But because I told them I had no imminent plans to kill myself, they wouldn’t admit me. They gave me sleeping pills and the address of an urgent care psych center.
Problem was, the place was a partial-hospitalization program, which my insurance did not cover and would require me to be away from my son during the day. I felt helpless and desperate. I didn’t have any hope of anyone being able to help me. I was taking the medication, but it didn’t seem to be doing anything for me. Things escalated at home with my husband and I really feared hurting myself, so I packed our stuff and we left.
After my Mom and my sister helped me get settled in, things started to turn around. I moved in with my sister who was a huge support to me. I had family and friends around me constantly. I had the help I needed to care for A while taking care of myself. I sought help at a local center devoted to postpartum mood disorders and began to see a psychiatrist and therapist regularly.
I was given a name for what I was going through: Postpartum OCD. I joined a local support group that meets monthly and I met the most amazing and inspiring women who really get it and have been there. Their strength was contagious. I starting believing that I could get better.
The horrible thoughts in my head started to disappear. I felt more connected with my son. I still had some panic attacks where I felt myself regressing and dark thoughts would again invade my brain. Sometimes, I felt like I wasn’t getting better at all and there was no point to struggling through it.
But I learned to reach out to those who cared about me when I felt this way. During my darkest days the phrase “this will not end well” would repeat itself in my head, this mantra was now replaced by “this too shall pass.”
Please don’t take my sunshine away
Time, therapy and medication have given me my life back. My recovery has been full of ups and downs; good and bad days. I am still working on mending relationships. But as the autumn came, I felt my old self emerge.
I will never be the person I was before I had a child, but I am a stronger, wiser woman. I have found I am strong enough to make it on my own, but that the support of others is essential. I am learning to enjoy the moments without obsessing about what will come next. I am learning to let go of complete control and let my son explore and experience with my guidance.
It’s a new way of living, and it’s very freeing. I am able to enjoy every day with A. He amazes me on a daily basis. I don’t know what challenges or heartaches I might face in the future, but now I am healthy and strong enough to face them head-on. And if I’m not, I will still be okay because of the support system I have.
And in February, I will be at my son’s first birthday party, celebrating his year of thriving and mine of survival.
Every month, I hoped that I was pregnant. Despite endless ovulation predictors, pregnancy tests, and prenatal vitamins, I never was. I just knew that I was pregnant during my cousin’s baby shower because I was a whole five days late. I was not. I started my period during the baby shower. I cried in my car alone the whole way home.
After two-and-a-half years of trying to have a baby the old-fashioned way – you know, by relaxing – we turned to science for help. Extensive tests and a passionless affair with a tool we called the dildo-cam (wand ultra-sound) determined that my husband’s swimmers were on, as he so eloquently puts it, on sabbatical. Our doctor felt that IVF (in-vitro fertilization) with ICSI (intracytoplasmic sperm injection) was our best bet at baby-making.
I didn’t have much hope for our IVF cycle. We transferred two embryos and none of the remaining eleven made it to the freezing stage so I thought I had a couple of duds in my uterus as well.
I ended up pregnant with twins on our first try.
I was shocked. After all the single lines on the pee stick, I never thought I would see two. I am not an optimist. That mother fucking glass is half-empty because some slag took a big gulp from it when I was taking a pee on one of the endlessly negative pregnancy tests. I didn’t even pee on a stick until after I had my blood drawn at the doctor’s office to see if I was pregnant.
I found out I was pregnant in a Fred Meyer bathroom across the freeway from our clinic.
Holy hell was I sick. I was not a beautiful, glowing pregnant person. I was a lanky-haired puking pizza-face. I puked starting at six weeks and didn’t stop until the day I delivered. I even puked when they were sewing me up from my C-section. For all the trouble I’d gone through to get pregnant, I’d hoped for an easy pregnancy.
During an obstetrics appointment, my doctor heard one of the babies heart skip a beat, which freaked me the hell out and warranted an appointment with a heart specialist within the week.
The visit with the heart specialist was short and sweet. It turned out the skip was in my daughter J’s heart and was chalked up to a momentary “short circuit in her electrical system.” So, in essence nothing to worry about, crisis averted for now.
Other than a brief stint of pre-term labor at 34 weeks, which put me on house-arrest, everything went smoothly until delivery day at 37.2 weeks.
The day I heard the most horrible sentence ever: “there’s something wrong with your baby and we don’t know what it is.”
I had a scheduled c-section at 37.2 weeks. Things went well at first. The doctor first pulled out Baby A, my son G, giving him a black eye in the process because he was lodged deep in my pelvis.
Next came Baby B, my daughter J, and the room went silent.
I didn’t notice this until a little later because I was busy trying not to throw up as they put me back together. I did not succeed.
In recovery, where I was shaking like an alcoholic coming off a three-day bender, a nurse asked me if anyone had told me about my daughter. She went on to tell me that there was “something” wrong with my daughter but no one knew what it was and they were trying to figure out if they were going to have to emergency transport her to the Children’s Hospital sixty miles away.
I had no clue what she was talking about. My recovery nurse shot daggers at the big-mouth as she called the anesthesiologist for more anti-shake drugs, which is the technical term according to my redneck ass, because the shakes kicked into overdrive again. The on-call pediatrician came into the recovery room and said basically the same thing as big-mouth, and added that my daughter had some sort of skin covered tumor the size of lime on her tiny 5 pound body at the base of her spine. The pediatrician had a call into Children’s to find out what to do because she had never seen anything like it.
Because her tumor was covered with skin, she didn’t have to be transported, so she stayed with us and was able to come home. Two weeks later, we went to Children’s to find out what was wrong, little did I know it would take six months and three neurosurgeons to identify what her defect was and what to do about it.
At the two weeks of age appointment we found out she had a neural tube defect (NTD).
We were told that she had one type of defect called a myelocystocele (hernial protrusion of spinal cord through a defect in the vertebral column) only to find out that she had a different kind when she had an MRI at six months of age. If really sucks to think your kid has one thing and to have made your peace with it to find out it is something else.
At six months of age, we now had an official diagnosis of lipomeningocele: which is a fatty tumor that attaches to the spinal cord, tethering it and not allowing it stretch as the child grows it. Lipomeningocele have a 1-2/10,000 occurrence rate.
During the MRI we also discovered that she has a bony defect in her left ear called an enlarged vestibular aqueduct that could cause her to go spontaneously deaf in that ear. I lost faith in the neurosurgeon that made the initial diagnosis, so I made it my mission to find the best tumor neurosurgeon in the country and I did.
I found him at Johns Hopkins and sent him J’s records. He agreed with the diagnosis, but not the treatment plan of the original neurosurgeon.
The original neuro, we call him Dr. Asshole around here, wanted to wait until she showed symptoms of nerve damage. The nerve damage symptoms, which are irreversible, include loss of bowel and bladder control and mobility; anything below the lesion could cease functioning. Dr. Johns Hopkins told me to call up his colleague Dr. Awesome, who was the head of neurosurgery at our Children’s Hospital. Dr. Awesome used to be the head of Johns Hopkins.
If I hadn’t been in such an unbelievable fucked up state of, oh my god I have twins and something is wrong with my daughter and how the hell do I do this? I am sure I could have figured out who the best doctor was, but I didn’t and I am glad that I had someone do it for me.
Dr. Awesome is the man.
He basically looked at me, blinked a couple of times and said, “We’re doing J’s surgery as soon as we can get the special instruments from the university.” There was no waiting to see if she would have nerve damage, it was take action now. I love Dr. Awesome. Yes, he is a typical neurosurgeon, so he lacks a little personality, but he’s a great doctor that does not fuck around.
J had surgery at ten months of age and did amazingly. The 4.5 hours she was in surgery were some of the most terrifying of my life and she had to stay in the hospital on her stomach for five days, which was not so fun. She had learned how to stand the week before her surgery and that is all she wanted to do. Did I mention she is also a crazy maniac? She broke the Styrofoam board that held her arm straight for her IV and ripped it out, then they put it in her foot and she ripped that out too.
At two years old, J has full use of her legs, with only slight nerve damage on the left that hasn’t caused any issues yet. She may be looking at a leg brace at some point, but we will deal with that if it occurs.
She has seven specialists that we see every six months that track her progress. They’re all impressed as hell with how well she’s doing. Her left ear does have some slight hearing loss in the low tones, but it’s another thing we just watch.
We watch a lot. I check her toes every morning to make sure they aren’t curling under. I analyze her walk several times a day. I am obsessed with her bowel movements and how much she pees because bowel and bladder function could be the first to go.
I repeat the mantra “life altering not life ending” to myself every night. I cry almost every week. I am thankful for the people that have been there, that have let me talk or not talk. That banded around me from all over the country to help me breathe. I try to stop worrying about the future. It is the hardest thing for me to do.
I worry school and questions about the huge scar on her back. I don’t want to have to explain why she can’t head a soccer ball, be tackled or slide into first base. I don’t want this for her. For a long time I felt like I caused this by doing IVF. It sounds insane and my therapist helped me see that. We spend at on average two days a month at Children’s which helps put things in perspective for me. Seeing a mother carrying a plastic tub for her teenage daughter who has a scarf wrapped around her head is a big slap of reality.
Life altering not life ending.
Since 2003, the March of Dimes has led Prematurity Awareness Month activities in November as part of its Prematurity Campaign.
The goals of the campaign are to reduce rates of premature birth in the United States and raise awareness of this very serious problem.
Please, we encourage you to to submit your own stories of prematurity with The Band.
Four years ago I would not have paid attention to an event like Prematurity Awareness Month and I likely would not have even known about the work of the March of Dimes. Today I am proud to be a supporter of the March of Dimes and their important work.
On March 8, 2007, my niece, Lucy Clare entered this world after my brother, Jonathan and sister-in-law, Mary, made the difficult decision to have an emergency c-section at 25 weeks gestation. In the weeks leading up to Lucy’s arrival, Jonathan and Mary knew that there was a chance Lucy would have to arrive early. She wasn’t growing and the doctors said that if she didn’t reach 500 grams (1.1 pounds) there would be very little they could do.
We all held our breath as Mary went to each ultra-sound appointment, hoping that this baby (gender unknown to all but them) would grow – just a little bit more, just a few more grams. They were briefed by the ob-gyn on what outcomes to expect if she was born at 32, 30 or 28 weeks.
A few weeks prior to Lucy’s birth, they were given a tour of the NICU so that they would be prepared for what they may encounter. At their last appointment, on March 8, they were told they had to make the difficult decision – wait another week and risk that she wouldn’t survive in utero or deliver that day knowing that the hospital had never had a baby that small survive.
Wanting to just give Lucy a chance, they opted for the c-section.
Lucy was a micro-preemie in every sense of the word. She weighed only 400 grams (14 ounces) and was just 10 inches in length. At her lowest, she dropped down to 290 grams. She was given surfactant therapy – its research was funded by the March of Dimes – for her lungs.
She breathed with the help of a ventilator for five weeks before being switched to CPAP for two months and then on nasal cannula until she was discharged. Lucy’s time in the hospital was filled with ups and downs – it often seemed like one step forward and two steps back. She faced many of the challenges that preemies in the NICU face: infection, retinopathy, the struggle to breathe on her own, a heart condition and feeding challenges.
Lucy spent 182 days in the hospital – six long months – before she joined her family at home.
Today Lucy is a happy, funny, easy-going 3 ½ year old who adores her big sister Stella and is starting to enjoy her baby sister Mallory. She loves books, colouring, watching Yo Gabba Gabba and dancing. But she still faces many challenges: she takes medication for pulmonary hypertension, she relies on a feeding tube for 100% of her nutrition and she has deteriorating eyesight. She has therapy appointments with a feeding specialist, physiotherapist, and attends weekly sensory motor sessions.
The work that the March of Dimes does through education, Prematurity Awareness Month, March for Babies and so much more, is crucial to helping all babies have a healthy start. Our family considers itself lucky that Lucy is here today and we want to do everything we can do to raise awareness for prematurity-related issues. It’s our chance to give back just a little bit.
Visit www.marchofdimes.com to find out how you can help!
The only thing I’d wanted was another baby.
So when, after meeting a good guy, marrying him and buying a house in the suburbs with a yard (like I was Suzie-freaking-Homemaker), I found myself knocked up once again just like I’d wanted, I couldn’t begin to understand why I was so miserable. After living through my first pregnancy — something that can only be described through a particularly bad country song — raising an autistic child, escaping my alcoholic parents and finally having another baby, this time the way I thought it was “supposed to be,” my feelings were beyond bizarre to me.
Certainly, my life was stressful. But my life has always been stressful. I’d had to quit my job and money was tight, something my new husband worried about often and loudly. When we’d moved to the ‘burbs, we’d left behind our friends so my support system of single friends was gone. We’d occasionally talk on the phone but it became more and more obvious that we were no longer on the same page. It stung more than I’d thought it would.
Day after day during this pregnancy I sat alone on the couch, or praying to the porcelain gods, while my husband worked 14-hour days. My distant son, never a source of emotional comfort anyway, was in school all day. These were the days before I’d adopted the internet as Your Aunt Becky, so I was Becky, As Herself. I had no one to confide in, no Band of Merry Pranksters to confess my feelings to, and now neatly severed from all of my support systems, I floundered.
I’d been depressed before, but the feelings I was experiencing were new. I felt like I was mired in quicksand, rooted in one spot, unable to move forward. Always a social beast, I could barely leave my house. A simple phone call became too much to handle. The isolation bred isolation and now a trip to the store exhausted me for days beforehand and afterward.
It was all I could do to get out of bed in the morning.
Sleep was an elusive mistress. Night after night, as my son churned in my belly, I tossed and turned, unable to ever fall into that deep REM sleep that the doctors insist we need to survive. I remembered that sleep deprivation was a technique that soldiers used on POW’s to drive them slowly insane, which was precisely what was happening to me. Each morning, I dragged myself out of bed, unrefreshed and sad, filled with a sense of impending doom.
Finally, untrusting of my OB, I turned to Dr. Google for advice. While I wasn’t yet Your Aunt Becky, I was a blogger and I knew that the beauty (and horror) of the internet is that there’s always one soul that no matter how depraved you’re feeling, can sympathize with you. Setting my search to “antepartum depression,” I was confident that I would find something.
Nothing came up. Well, okay, there were a couple of things, but mostly with “antepartum” and “depression” mentioned in the same article.
Not exactly helpful, Dr. Google.
Fine, I thought. I’m a freak.
Ben, my first, had been born after Andrea Yates had her bout with postpartum psychosis, so I’d had no end of pamphlets shoved at me to help me combat any urges to hurt myself or someone else after he was born. We’d studied the spectrum of postpartum mood disorders in nursing school as well. But antepartum depression was a big question mark.
So what did I do? NOTHING. I wore a groove on the couch where I sat miserable and sad until my second son, Alex, was born squalling and healthy. Almost instantly, my mood improved.
When I got pregnant with my daughter, I expected the antepartum depression to return and it did. By this time, I had become Your Aunt Becky and shared my troubles with my Pranksters. Many stepped up and said that they, too, had experienced the same types of feelings. It was wonderful to feel less alone; less like a circus freak. I went onto an SSRI in my second trimester to try to combat the antepartum depression, but even with that on board I didn’t feel much better. Pregnancy, it seems, doesn’t agree with me.
What shattered me was after I shared my experiences about antepartum depression, the usual search terms that brought people to my blog (boring things, aunt becky sucks, mommy wants a vodka) were replaced by these: “antepartum depression,” “depression during pregnancy,” and “sadness in pregnancy.” Knowing that there were other women sitting on their own couches struggling the way I had broke my tiny black heart into a billion pieces.
The isolation I experienced was devastating and while I ended up walking away from the experience with only a little darkness on my back, I hate to imagine others out there suffering the way that I did. I’m thrilled that postpartum depression has gotten so much support. It should get all that it does and more. Women supporting other women is beautiful. I want antepartum depression, which they now call antenatal depression apparently, to get some of that support, too.
I hope that for the next pregnant woman who sits on her couch, crying and feeling as desperately alone as I did, I hope that she can find the light.
Because there is light. And it is so, so good
Infertility affects us all differently with the exception of one thing: the pain.
This is her story:
FULL DISCLOSURE: I am not a Mommy Blogger. That is because I am not a Mommy. I would like to be a Mommy mind you, but alas, I am not.
Apparently, my female parts don’t get along with sperm as well as they should and they reject those little buggers every time my husband busts a nut. And yes, trust me, we’ve tried everything from WD-40 to Grandma’s old tyme Hold Yer Legs Up Over Your Head technique. My husband actually refers to this as “Mauding it” a term he coined after watching The Big Lebowski one too many times. For those of you who haven’t watched the film 70+ times, that’s Maude Lebowski’s (Julianne Moore) technique of rolling around on her back to let the semen deposit brew.
So anyway, it’s been two years of nut-busting and Mauding it and quite frankly, I’m starting to get a little bit depressed. Sure, we joke about it and try to make light of the issue, but the last time I got my period, my husband cried. As you can imagine, in my hormone-enhanced state, it turned into a dueling cryfest. It was worse than when we watched Sophie’s Choice last winter.
I should probably also mention that aside from our down-home techniques, we have gone through all the proper medical tests. According to my doctor and all the lab technicians we’ve met along the way, everything is working properly on both sides. My doctor eventually pronounced our situation as “unexplained infertility.” I sort of stared at her when she delivered that prognosis until I was finally able to locate my smart assedness and retorted “so is that like the proper medical way of saying you don’t have a clue?” My OB-GYN doesn’t have an ounce of humor in her and she said “it’s what we call it.” Thanks. She sent me back out into the streets knowing less than I did before I came to see her.
While we’re technically not in any rush, we are both 34, and well, time is a-ticking. I swear that all the comments my mom and in-laws make don’t bother me, but I would sort of like to get pregnant so I can just tell them to shut the hell up. My mom, especially. She totally blames me. Everybody does. Even my husband.
Carrying this burden is annoying and unfair. While I realize that there are people out there with problems far worse, it doesn’t change the fact that getting pregnant is theoretically a fairly simple thing to do. I frankly just don’t understand. I see crack whores in Hell’s Kitchen who are able to reproduce. Repeatedly. I only smoke crack when I drink. It’s just not fair. (note the sarcasm)
Seriously though, I take pre-natal vitamins and do yoga and do acupuncture for fertility. I eat healthy, I exercise. I’ve even given up lots of stuff like running and drinking wine and eating sugar. I guess I haven’t given up on hope though. But you know what, it’s a daily battle.