Well, I found out in early September that, true to form, I had become pregnant immediately.  Unfortunately I suffered my first ever miscarriage and lost the baby on September 23^rd at six weeks.  My husband had a very difficult time with the loss, but I took it a bit more in stride having discovered that miscarriages are ‘normal’ and it would have been very unusual for me to have gotten through my reproductive life without one.  So we waited another two months and tried again.

Christmas morning, 2003, I woke up early and took a pregnancy test very secretively at my sister-in-law’s house.  I then went out to the living room and woke my husband up with quiet congratulations.  Both of us grinned ear to ear and kept it quiet.  We were not yet prepared to tell our children or the rest of our families given our recent loss.  So it was wait time again.

I anxiously awaited my first pregnancy appointment, hoping the doctors would be able to hear a heartbeat or that they would perform a sonogram and see one.  Unlike my last pregnancy, I was really feeling the hormones and was hopeful this meant things were going right.

At 11 weeks, I went to the doctor for my first sonogram and was thrilled to see the baby’s heart just beating away.  Then, the follow up with the doctor sent me into a tailspin.  A ‘new’ method to screen for potential problems revealed our baby had a nuchal fold measurement of 4.4mm compared with a ‘normal’ 4 mm.  As it turns out the ‘normal’ measurement was actually 3 mm based on the baby’s gestational age.

So a few more weeks of waiting for the scheduled amnio during which time I spent hours searching the Internet looking for information about nuchal fold measurements and what an elevated measurement could indicate and how likely it was that something was wrong with my baby.   I discovered the most likely abnormality would be Trisomy 21 or Down’s Syndrome, followed by Trisomy 13 and 18 – both of which are considered severe and very often fatal. 

As we waited in the lobby of the doctor’s office for the sonographer, I was extremely anxious; I just wanted to hear that everything with our baby was fine.  At last we were called in and we saw our little peanut on the screen.  My husband remarked at the time that the baby’s head looked like an egg.  I thought he had no idea what he was talking about.  After a few minutes with the sonographer we were ushered into the doctor’s office for what I had assumed was going to be an explanation of the anticipated procedure.

The floor of my world gave way as we listened to the doctor explain that our baby’s heart was on the wrong side of the chest and that the head was misshapen – I guess my husband did know what he was talking about.  The doctor then explained that he could not perform the amnio because the baby was in a position that prevented safe insertion of the needle.  We would have to wait a few more days and try again. 

I couldn’t look at the doctor; I couldn’t look at my husband.  I didn’t know if my baby was going to live and if it did what quality of life it would have.  I was stunned.  I went home that afternoon, laid on the couch and cried.  I considered our options and what choosing to interrupt the pregnancy might mean to me, to my children, to my husband and to us as a couple and a family.  I had terrible thoughts that if I ended the pregnancy something terrible would happen to Megan and Ben.  But I also imagined a very difficult life with a child with significant developmental problems.

I spent more time doing research on the Internet, this time narrowing my search to chromosomal abnormalities only and waited for the amnio scheduled for Thursday.

This time as I lay on the table in the sonogram room, I didn’t try to see the screen and our baby and I wept – all while trying to hold still for the very large needle that would remove amniotic fluid for testing.  The first insertion was unsuccessful and the doctor had to try again.  Finally the procedure was complete and we asked the doctor for a few minutes for more questions.

Based on the baby’s physical presentation, we were told he/she most likely had either Trisomy 13 or 18.  Most Down’s babies look ‘normal.’  I asked if it were likely my baby would survive to term and if he/she did how long would he/she live after birth.  I asked what the termination process would be and who would have to know we decided to end our baby’s life.  My husband and I had a quiet lunch and more or less decided to end the pregnancy, but we would wait for the results of the amnio and discuss our options with the Perinatal Center.  What a horrible feeling.

While we waited for the awful results, I contacted a counselor with my company’s Employee Assistance Program.  I didn’t know how we could live with any decision we would ultimately make.  And we didn’t know how our decision would affect our two older children.  We wanted to make sure Megan and Ben would survive.  The EAP counselor made an appointment for my husband and me to see a counselor in our local area.  It didn’t take my husband and I long to realize we were at the wrong place.  Fortunately the counselor mentioned Hospice might be able to help us.

My husband spoke with a gentleman from Hospice and tearfully explained our situation.  Several days later we were able to speak for the first time with a wonderful woman who listened to us and helped us decide what information was best for Megan and Ben at that time.  We decided we would not tell our children that there was something wrong with their baby sister/brother, but rather we would wait until we knew more.

Finally the call came.  Our baby did indeed have Trisomy 18.  I was not feeling well that day, I had been experiencing a lot of abdominal pressure since the amnio had been performed and had a terrible backache.  Since my labor pains with my first child were entirely back spasms, I thought I might be in premature labor.  My husband and I actually hoped our child would be born then and save us from making a terrible decision.  But at the doctor’s office, the baby’s heartbeat was loud and strong.

Now that we knew what was wrong with our baby, we went to see the perinatal specialist and the genetics counselor.  The genetics counselor explained that we had done nothing to cause the chromosomal abnormality; it was just a fluke that a third 18^th chromosome came along at conception.  But it meant that every cell division/creation following conception was affected and that is why the condition is almost always fatal.

Again I couldn’t watch the sonogram.  The sonographer told us she would put some pictures in an envelope in case we ever wanted to see them.  After the sonogram, the perinatal specialist told us our baby had a diaphragmatic hernia, which meant the diaphragm had not closed and the intestines had gone into the chest cavity shifting the heart to the right and compressing both lungs.  He further explained the baby’s growth was retarded and he/she had an omphalocele (hole in the abdomen at the umbilical cord) and spina bifida.  Given all of this data, it was likely the baby would not make it to term and if it did and survived birth, he/she would only live 1.5 – 2 hours.  The doctor again presented us with all of our options and made sure we knew the baby would not have to be named nor buried if delivered before 20 weeks, but that we had until 23 weeks to decide to terminate.

We finally asked the sex of our baby.  In my heart I knew it was a girl.  Most Trisomy 18 babies are girls, especially if they survive to term.  I was right.  Our baby was a girl.  Her name was Hailey Grace.  I cried and cried.

My husband and I spent time on ‘both sides of the fence.’  We didn’t know if we could endure months of carrying our daughter knowing she was going to die and we didn’t know if we could prematurely end her life.  I also feared the doctors were wrong and that her condition would not be immediately fatal and she would live a life that wasn’t worth living.  If we chose to end her life, how would we explain the loss of our baby?  It was quite obvious to even the casual observer that I was pregnant.  I asked the genetics counselor if the diaphragmatic hernia could correct itself.  She said ‘no,’ Hailey would require immediate surgery to correct the condition and because of her Trisomy 18, the doctors would not operate.

Finally we made our decision.  We would keep Hailey as long as we could.  While I will not sit in judgment of anyone else and the choices they make, I could not bring myself to end her life.  I could picture myself in the hospital as labor was induced and I knew I would want to change my mind and it would be too late.

While the perinatal specialist and genetics counselor were wonderful, my husband and I felt more comfortable with our own doctors.  We asked if they ‘wanted’ us back for the remainder of the pregnancy and the eventual birth of our daughter.  The immediate response was they would of course want us back and hoped that we would choose to continue our care with them.

I won’t lie and say I never hoped Hailey would die while I carried her, I was incredibly anxious about her birth.  But I soon began to hope that my little girl would be born alive and that I would have my 1.5-2 hours with her.

We still hadn’t told Megan and Ben there was anything wrong with their sister or even that I was carrying a baby girl.  There was just too much time before I would give birth and we didn’t know if she would even survive that long.  The counselor at Hospice suggested waiting until a couple of months before the baby’s due date to let them know.

So while we awaited the birth of our daughter Hailey, we started asking questions.  We contacted the Hospice counselor again and we began to understand that Megan and Ben would be ‘better’ for having had to survive the loss of their sister.  They would face the world with less fear and they would begin to understand that death is a part of life.  Up to this point we had intentionally sheltered our children from death – skipping over the word ‘coffin’ in Snow White, setting free the butterflies we had raised so they would not die inside the butterfly house and being sure never to call their attention to the fact that my husband’s mother had passed away when he was in high school.  We also found out it would be okay for our children to see and to hold their baby sister even if she had already died.  And that they could share in the pregnancy, their loss would be greater because of the attachment, but they would survive and they would be stronger.

We called the bereavement counselor at the hospital where our daughter would be born.  We needed to find the right words to use explain to Megan and Ben, when the time was right, why their baby sister was not going to live.  We wanted to know if our families could be waiting while I was in the operating room delivering our daughter by c-section and could they come to see us in the recovery room.  Had she ever experienced siblings seeing and holding a deceased baby?  How long could we keep Hailey with us after she had passed away?  Did we have to be on the floor with mothers who still had their babies?  Who could go into the operating room with us in case my husband had to go somewhere with the baby?  What would Hailey require in terms of care following her birth?

I spoke with a neonatologist and she confirmed we would be lucky to have 1.5-2 hours with our little girl.  She said the best place for Hailey was in our arms and that she would pass peacefully and we would know when it happened.  Hailey would be a beautiful little girl she said, the physical abnormalities would not be overwhelming, though she would most likely be a tiny little peanut.  No care would be required for her omphalocele or spina bifida.  She suggested we notify the hospital before her delivery that we did not want the NICU involved, but assured us we could call them in if we changed our minds.

My husband and I made funeral arrangements and spoke with our parish priest.  I am so glad we talked to the funeral director and priest long before Hailey was born.  My first inclination was to have our daughter cremated and to either keep or spread her ashes.  The priest helped us understand that it was important for us to have a place to ‘visit’ Hailey and that if we should decide to have her cremated that we should bury the cremains.  We also realized we wanted to be able to bury some personal items with Hailey and so we decided to have Hailey buried, in an infant casket.

We also asked our priest about baptizing Hailey and planned her service.  He arranged for us to meet with the cemetery caretaker to pick out her gravesite.  We chose a spot in the infant section underneath a small evergreen tree.

We went to the florist and chose flowers for her funeral; we chose flowers that would last the longest in pink, white and purplish-blue.  My husband wrote Hailey’s obituary and sent it to the funeral home for them to have it printed in our local newspaper, in it we identified a charity that helps children deal with loss to receive donations in Hailey’s memory.  We recorded Hailey’s fetal heartbeat at one of our regular doctor appointments.

As we neared the end of the school year we decided to tell Megan and Ben about Hailey.  We considered our words carefully, knowing Meg really wanted a baby sister and was likely to be so excited about it being a girl that she would lose sight of the fact Hailey was going to die.  Meg cried as we told her (though she was excited she was going to have a baby sister).  Ben was quiet though we knew something was wrong.  Finally he told us what it was – he wanted a baby brother!  We told our children as much as we knew, even explaining that Hailey had three holes, one inside and two outside, that her heart was on the right side of her chest and that she would not be able to breathe after she was born.  Hailey just did not grow right. 

We had decided to tell the kids about Hailey before the end of the school year so Meg’s teacher could be on the lookout for any change in behavior we might not see at home (we didn’t think the daycare provider that would care for her in the summer was equipped to handle this task), so I called her kindergarten teacher at home Sunday night to tell her the news and to ask that she share it with the principal and anyone else who might need to know.  Monday morning I got up early and went to the daycare ahead of my husband and Ben and let them know his little sister was not going to live.

It was a relief to finally have the awful news out in the open.  We still didn’t share it with everyone we came across, but we did not need to worry that Meg and Ben would hear it from someone other than us.

The closer we came to Hailey’s due date, the more anxious we were for her to be born alive.  We requested a second visit with the sonographer and specialist at the Perinatal Center.  This time, after explaining to the sonographer that we knew our little girl was going to die, I watched every minute of that wonderful sonogram.  The sonographer measured the size of her omphalocele and the hole in her spine.  She took a peek at her face and determined Hailey would most likely not have a cleft lip – a common occurrence in Trisomy 18 babies.  We saw Hailey’s little rocker-bottom feet and noticed she might be missing a toe.  Hailey kept her hands clenched and her arms contracted suggesting it was unlikely she would be able to open her hands, another common T18 condition.  Hailey’s growth had slowed once again – the only measurement that was ‘normal’ was that of her leg, she was going to have long legs like her big sister.  To us our little girl was beautiful and absolutely perfect.  I laughed as she moved around and cried, knowing I would not get to keep her.

The perinatal specialist again told us Hailey might not make it to term and if she did, she would die shortly after birth.  The biggest problem she faced in utero was not growing.  I was acting as the ‘perfect heart-lung-kidney bypass’ machine for my little girl so her diminished lung capacity would not be fatal until she was no longer inside of me.  He said our best chance of seeing Hailey alive was to deliver her by c-section, as her omphalocele would likely rupture during a vaginal delivery and if any organs were protruding from it, she would bleed to death before she was born.  We asked if it was reasonable to ‘take her’ early – to deliver her prior to the 39th week surgery already scheduled.  Without hesitation he said ‘yes.’  We would not be compromising Hailey or her chances for survival by delivering her early.  The only condition was that she could not be delivered before 36 weeks as before then she would be considered premature and would have additional issues to contend with.  Further, he mentioned an intentional delivery before 36 weeks could be considered a late-term abortion.  All we wanted was a little bit of time with our princess while she was alive.

We went back to our ‘regular’ doctor’s office and asked the same question.  The doctor we saw that day said that without question she would deliver Hailey at 36.5 weeks and would have her placed in our arms immediately following her birth.  She reaffirmed our decision to not use invasive techniques to try and save our baby’s life.  We now had Hailey’s birth date – August 5, 2004.

I gave Hailey pep talks daily, urging her to survive so her daddy and I could meet her and hold her in our arms while she was alive.  We had five weeks left to go.

Once Megan and Ben knew their baby sister was going to die, we decided we’d make her a blanket and stuffed animals for her to snuggle.  We (they) chose several different flannel fabrics and from those I made a patchwork blanket.  I backed it with yellow and blue flannel – the colors of Meg’s and Ben’s favorite blankets.  Meg chose to make her sister a bear holding a heart, which she drew and I cut out of felt and sewed for her to stuff.  Ben decided on a duck.  After they were done they decorated them with lots of glitter fabric paint.

We bought Hailey a beautiful colored crystal cross and Meg and Ben liked it so much we bought them each the same one.  I searched the Internet for preemie clothing and we bought two small outfits for her to wear in the hospital.  We had already purchased the outfit in which she would be buried.  We had also bought a kit with which we could take her footprints – one that did not require mixing cement.  We ordered a mitzpah coin (“The Lord watch between me and thee while we are absent from one another” on a coin split in two).  And we bought film, lots of film, in black and white and color.  The kids made cards and pictures for their little sister and I started taking pictures of everything we had gotten for her.  I took Megan and Ben to the cemetery so they could see where Hailey would be buried – they liked the little evergreen as much as my husband and I did.

My husband and I also decided to get a stuffed bear and duck for Megan and Ben from Hailey.  We wanted to make sure they had something to snuggle and remind them of their baby sister.  They were the kind of stuffed animals a baby would choose if she could, unbelievably soft in baby pink and yellow.

We talked about what Hailey would look like.  I was convinced she would have lots of hair and stork bite/angel kiss birthmarks like both her brother and sister.  We imagined what Hailey might be like if she lived.  Meg was sure Hailey would be the perfect little sister.  My husband I were sure Hailey would team up with Ben and give Meg a run for her money.

We even took care of some of the little, more ‘practical’ tasks and bought thank you notes and checked into my company’s policy regarding adding funds to our healthcare reimbursement account to pay for Hailey’s birth.  Oddly enough, if Hailey were born alive, I could add funds, if she died before her birth, I could not (though I would still incur the same hospital and physician costs).  The gentleman with whom I spoke immediately told me about the appeal process….

I also spoke with the mother of another Trisomy 18 baby girl, Maia, born almost two months before Hailey’s scheduled delivery.  Maia was the daughter of one of my sister’s co-workers and when my sister discovered his child had T18, she gave them our phone number.  Maia was still living, waiting for someone to agree to and perform heart surgery.  I found out later that she died just days after Hailey was born.

I left work three weeks before Hailey was due to be delivered.  I spent time on my own and a lot of time with Megan and Ben.  I continued to give Hailey a daily pep talk. 

Our families arrived on Wednesday, August 4^th, the day before Hailey’s birth.  My brother came from Arizona, my sister and parents from NJ.  My husband’s family arrived from Rhode Island.  We had already made our master plan for who would take care of Megan and Ben and make sure they were at the hospital in time for Hailey’s birth.  That evening my husband did not want to leave work.  He knew that all too soon he would see his daughter and have her slip away from us.

My husband and I took a long walk after we had dinner (though neither of us could eat).  We didn’t say much as we walked, but we held hands.  And we cried.  Understandably, we did not sleep well that night.  We woke early to be at the hospital at 5am in anticipation of our 7:30am surgery.  As we waited in the surgical preparation room, we began the explanations to those caring for me that our daughter was going to die.  It took only a little while before anyone coming into the room knew. 

For the first time ever during my pregnancy, my blood pressure was high.  The nurses could not get an IV line going – it took three tries and the anesthesiologist to get the line in.  The nurse who would care for Hailey asked if we wanted her to help our daughter to get started breathing.  With all of the questions we had asked, we were going to say ‘no’ until she told us Hailey would probably not start breathing on her own.  My husband responded ‘Yes, please help her.’  Through everything my husband never left my side.  I remember laying on the operating table feeling like my legs were bent and I all I wanted to do was put them down, but I couldn’t.  (My legs had remembered the last position they were in before they went to sleep).  Again I was anxiously awaiting Hailey’s birth.

Just minutes after the epidural took effect, I heard the doctor say ‘she opened her eyes and peeked at me.’  Our daughter had been born alive!   My husband went to Hailey as the nurse began to quickly start her breathing and wrap her up so I could hold her.  My husband baptized our daughter with the holy water we had gotten from the church (though any water would have been fine).  Hailey opened the hand I didn’t believe she would ever be able to and squeezed my husband’s finger.  He called over to tell me and I wept tears of joy.  Next thing I knew I was holding my baby girl and watching her make faces at me and blow bubbles out of her nose.  I hope I will always remember that moment.  I kissed her, told her how much I loved her and tried to live a lifetime with her in those few minutes.  The anesthesiologist took the first picture of our little princess in her mommy’s arms with her daddy watching her.

Just as the neonatologist had told me, we did indeed know when our little girl was gone.  She passed away very peacefully, having opened her mouth and closed her eyes forever.  Hailey’s death certificate says she lived 26 minutes, but we know she was gone before then and we know that she died in our arms.

After I was wheeled into the recovery room, the bereavement counselor came to see us and we told her Hailey was already gone.  She went to get Megan and Ben so they could see their little sister - we have wonderful pictures of Hailey being held by her big sister and brother.  Slowly each of our family members made their way into the recovery room to see our little angel.  Our priest came and blessed Hailey and spent time with our family.  There were many tears, but there were smiles, too. 

Our little peanut didn’t weigh very much, just 2.5lbs, but she was 16 inches ‘tall.’ (we were right, long legs like her big sister!)  The wonderful nurse who helped Hailey start breathing also took care of her after she had passed away.  After she weighed and measured her she gave her a gentle bath and dressed her in the clothes we had brought.  She also helped my husband make impressions of Hailey’s handprints and footprints, which we now have in a frame along with her picture.  It is her handprints that mean the most to me as I was sure, given everything that I had read, that she would not be able to open her hands – yet she did open them and squeezed her daddy’s finger.

While we were unbelievably saddened by the loss of our daughter, we were thrilled we had been able to hold her while she was alive and that our families had been able to see her.  We were at peace.

That evening I began bleeding internally.  My blood pressure suddenly went from too high to too low – having dropped to 75/38.  The room was instantly filled with nurses, doctors and technicians.  My husband looked on and wondered if I was going to make it.  I screamed in pain.  By one o’clock in the morning, I had had a blood transfusion (two units) and had visited nuclear medicine to check for a pulmonary embolism and radiology for CT scans of my abdomen to confirm the hemorrhaging.  We debated with the resident and our on call obstetrician about performing a procedure that would clot any vessels still bleeding, but my blood counts returned to normal and it appeared I had stopped bleeding on my own.  I slept on the stretcher that night as I could not bear the pain of moving to a bed knowing I would later have to return to the stretcher.

I had not held or watched my little girl in hours.

Later, though the danger of hemorrhaging appeared to have passed, my high blood pressure returned and I developed a fever from what seemed to be a urinary tract infection. (Add to that my milk had come in and I was unprepared for the ‘discomfort’ of not being able to feed my daughter).  I needed another IV line, this one for antibiotics.  On the 27^th needle stick of my hospital stay I was attached to yet another machine.  It was now Sunday morning.  Our families had been in town since Wednesday.  As ridiculous as it might seem, I was concerned about having to delay Hailey’s funeral and their departure.  My doctor agreed that if I was fever free until the next morning I could leave Monday afternoon as by then I would have been on IV antibiotics for twenty-four hours. 

We were never quite at ease that I was okay.

Because our families could stay with Meg and Ben, my husband could stay with me in the hospital.  While it might seem morbid to some, we kept our daughter in the room with us the whole time.  Before she was born I had thought that after she died she would start to smell and decay before my eyes, but other than being very cold to the touch and having her blood settle in her body based on which side she was laying and therefore becoming purplish in those areas, she didn’t change.  I would not have traded those days (with the exception of my complications) for anything in the world.  The nursing staff was wonderful and treated both my daughter and me with tremendous respect.  We never felt uncomfortable with our decision to spend time with Hailey after she had died.

Meg and Ben visited their baby sister and me every day along with other members of our family.  Each day when Ben arrived he would ask to hold Hailey and would sit proudly in the corner chair cradling our little girl.  My husband noticed that for two of those days, he was the only one to do so.

But because Hailey had been with us longer than expected due to my protracted hospital stay, the bereavement counselor was concerned Ben might begin to think that after someone dies you still get to keep seeing him/her, and in Hailey’s case, holding her.  It was time to say goodbye to Hailey.  We couldn’t bring ourselves to send Hailey to the morgue (to await the funeral director) with someone we didn’t know and on the weekend when we weren’t sure how long she’d be there.  The bereavement counselor agreed with our decision to wait until Monday and she would be the one to take care of our little princess.  Meg and Ben said goodbye Sunday night and that was the last time they ever saw their little sister.

Having to say goodbye to Hailey was one of the hardest things I’ve ever had to do.  My husband and I both held and kissed our little girl.  It was the first and last time I ever rocked her in my arms.  We said our tearful goodbyes, took more pictures and let her go.  The bereavement counselor gave us a bear to hold in our arms (for when we left the hospital) and Hailey a fuzzy pink blanket and a tiny rose from her own garden.  I didn’t leave the hospital in a wheelchair as I had with my first two children.  This time I walked.  As my husband and I drove away Eric Clapton’s song “Tears in Heaven” was playing on the radio.

With the exception of my husband’s short ventures out to get food and once to go home for clean clothes, neither of us had left the hospital since we arrived Thursday morning.  So when we left on Monday afternoon it was the oddest feeling.  My husband has commented that it felt like everyone was staring at us in the pharmacy where we stopped to pick up my prescriptions.  I was dreading the next day when we would bury our daughter.

My husband and I decided we would go alone to the funeral home to see Hailey before her graveside mass.  We would be the only ones to see her in her casket, though again we took pictures not knowing if we would be able to bring ourselves to share them with anyone.  The minute I saw her I started crying.  I am glad we saw her by ourselves and I am glad I gave her one last kiss.

Hailey’s funeral mass was said at her graveside, I could not go through a service at church and another at her grave.  Saying our final farewells twice was too much to bear.  We chose a simple private ceremony and decided not to see her lowered into the ground.  My husband read a beautiful poem I found on the Internet during my many searches (“To the Child in My Heart”) and our children and my niece and nephew let balloons go for Hailey to take with her. 

When we had first spoken with the funeral director, he had suggested we share a meal with our families following Hailey’s service.  It would be an opportunity to process the day’s events and to begin our recovery.  We thought a lot about what we should do and had selected a small restaurant for lunch.  At the last minute we changed our minds and asked the funeral reception team from our church if they could provide the meal.  Choosing to have our funeral reception at St. Mary’s was one of the few ‘impromptu’ decisions we made regarding Hailey’s life and death, but it was a good one.  It was comforting to be in a familiar place among people who knew what we were going through and truly cared.

Recovering physically from Hailey’s birth was difficult.  After I left the hospital I continued to have pain in my right shoulder from the blood in my abdomen, which had not yet been reabsorbed, and several weeks later I was back in the doctor’s office because I had begun to bleed profusely due to a blood clot that had formed at the opening of my uterus.  The upside to this visit to the doctor was that due to the unexpected bleeding, they performed a sonogram and were able to determine that my uterus was healing well.  I could begin to relax and believe I would be okay. 

Recovering emotionally has been and will be a much longer road.  I’ve spent a lot of time going through all of the beautiful gifts, cards and letters we have received and am so thankful for all of the wonderful people who have shared their stories of loss with us and for those who just showed they cared.  I hug the ‘Princess Hailey Bear’ my sister and her two children made for Hailey - ‘Princess Hailey Bear’ held our little girl in the hospital and we have some of the most adorable pictures from those moments.  We brought our film to a professional photographer for developing and he gave us the most wonderful pictures of our little girl, all without that horrible yellow cast most pictures taken in a hospital have.  I snuggle the blanket given to me by a good friend in which Hailey was wrapped while she was in the hospital.

We have spent time with the counselor at Hospice and she has agreed Megan and Ben are doing great and that we will survive.  We decided to participate in a support group facilitated by the bereavement counselor from the hospital – I have found it a good forum for talking about my little girl.  Many people are hesitant to ask about her or listen to me talk.  I love to talk about Hailey, even if it means I shed tears.

Friends prepared a scrapbook for Hailey’s pictures and it gave me great comfort to choose photos to complete the album and to share it with family, friends and now co-workers as I have returned to work.  My sister’s friend is producing a ‘Hailey video’ from the footage she and my husband took, along with the pictures, the recording of her fetal heartbeat, my husband’s voice reading the poem from her funeral and a beautiful song written by a gospel singer titled ‘Visitor from Heaven.’  I now anxiously await its appearance.

We planted a beautiful Pee Gee Hydrangea ‘Hailey Tree’ given to us by our wonderful neighbors in our yard and next to it a small evergreen from my husband’s co-workers. 

I have found comfort in writing thank you letters to everyone who helped us along the way:  our families, our doctors, the genetics counselor and perinatal specialist, our priest, the funeral reception team, the bereavement counselor, the nurses who cared for me and Hailey in the hospital and a special friend and co-worker who understood my unspoken need to tell ‘Hailey stories.’  Of course I have shared a picture of my little princess with each of them.  I have not yet written a thank you to the counselor at Hospice – I think we’ll still be seeing her from time to time - but I have thanked her many times in person.

My children have received ‘Hailey blankets’ from an organization called Project Linus that provides blankets handmade by volunteers for children who need a hug.  I have volunteered to make blankets for other children and think I may include a tag on each in Hailey’s memory.

The four of us together chose the stone that marks Hailey’s grave, it is made out of rose-colored granite and has a bear (Megan) seated in front of a cross and an angel reaching out to a duck (Ben).  As usual we decided to do things ‘our way’ and selected and designed her stone ourselves with some help from the graphic artist.  The stone was just placed the other day and it seems so final, it was the last thing we were waiting for.

We decorated Hailey’s grave with an angel pumpkin (and a baby pumpkin, too) for Halloween and have plans to trim the little evergreen tree for Christmas.  Hailey will have her own stocking that will be hung with the rest of ours and we will decorate our trees with angels.

Though I am not religious (irrespective of the religious nature of some of our decisions), I have discovered great peace in believing my little girl is in heaven, held in the arms of her grandmother who will take care of her for us until we see her again.  My husband insists his mom will have closed the snaps on her outfit that the funeral home did not because she was too tiny and she will swaddle Hailey in the blanket we made for her.

For all of the sadness Hailey brought into our lives, she also gave us great joy and many lasting gifts.  The gift of a new appreciation for life, for each other and for our children (all of them).  The gift of time to spend with Ben and Megan before I had to return to work.  The gift of being able to help other families and their children cope with loss.  And the gift of a beautiful little girl who will forever be on our minds and in our hearts.

I love you Hailey Grace, I always have and I always will.

The First Year….

In the year since we lost Hailey we have experienced overwhelming sadness, anger, fear of losing someone else, sweet memories and absolute joy in knowing how lucky we were to have our little princess come into our lives. 

Too much has happened to share everything, but I thought perhaps it might help those on a similar journey to read about our celebration of Hailey’s First Birthday (as told to friends who also remembered our little girl)…

Hailey’s First Birthday

I wanted to let all of you know how appreciative I am of your warm thoughts and kind words as we celebrated Hailey’s first birthday.  While to some it may seem an insignificant gesture, many of us have realized how incredibly wonderful it is for someone else to remember our little angels – and to tell us that they have.

Some of you know I was planning on taking a ‘Hailey day’ the day before her birthday.  A day just for me to sit and remember my little girl, without worrying about my family and how they were feeling or if they’d be upset if I was overwhelmed with tears.  But like so many days, life got in the way and between drop off (Meg and Ben), a doctor’s appointment and picking the kids up early to take Meg to dance class, I had little time to just sit and remember.  I did visit the cemetery and discovered another family has used a part of our design from Hailey’s gravestone – Ben’s duck!  And I finally dropped off my first Project Linus ‘Hailey Blanket’ and finished burning my Hailey CD with many of the songs that remind me of her (thank you again to those of you who shared songs with me).

As I lay in bed Friday morning and the time approached 8:09 (time of Hailey’s birth), a story appeared on the Today Show about a photographer who takes pictures of children (many of them infants) who are not expected to live…she talked about how important these photos are to the children’s parents and how talking about the children is life affirming – they were here, they were loved, they existed.  The story ended just about the time Hailey died.

After rousing some very sleepy children and finally getting our things together, we picked up her balloons, cake and flowers and headed over to the cemetery.  We sang happy birthday (Meg sang a very special rendition she learned in school) and quickly ate the rapidly melting ice cream cake!  Then Meg and Ben released the 40 butterflies (the last one hatched the morning of Hailey’s birthday) one by one – re-catching them several times…yes it took awhile.  There were a few with damaged wings, I guess sometimes butterflies do not grow right either, and these we left on top of fresh orange slices so we knew they’d have food.  There was one butterfly that would fly away as Ben tried to catch it, but kept returning to Hailey’s flowers, over and over.

We wrote notes on the balloons – Meg’s and Ben’s balloons were covered in writing as they wished their little sister a Happy Birthday  - and sent these on their way as well.  We were at the cemetery for quite a long time….

After traveling to NJ to celebrate my niece’s and nephew’s birthdays for the weekend, we arrived home last night and finally about 9pm I went upstairs to sit and remember.  As expected I started crying immediately as I opened her memory box and saw the little outfit she wore in the hospital – I am so glad we kept this one and chose another in which to bury her.  I had never realized it, but this beautiful, tiny little outfit was covered in little pink butterflies!  I didn’t have as much time as I would have liked to for my remembering, but her things are always there for me to look at, and Hailey is always in my heart. 

I actually did very ‘well’ as we celebrated Hailey’s first birthday – a part of me wishes I had been a complete mess, but our life goes on (Meg and Ben make sure of that) and Hailey is never far from my thoughts.

Sorry for rambling, but as usual, I am anxious to share my little girl with the world.

With love,

Margaret

P.S.  Tim gave me the most amazing gift the morning of Hailey’s birthday…a beautiful little porcelain (Lladro`) butterfly and Hailey’s Tree (given to us by our neighbors) flowered the week of her birthday!