In the Arms of An Angel

With the grace from God, I see, feel, and hear Abby.

A few weeks ago, I went to the cemetery by myself.  I sat down next to the settled dirt where Abby rests and started talking to her out loud.  I felt silly doing this, but I figured what the heck!!  I told her that I loved the pink blossoms, on what we call, "Freddie's Tree" in front of her.  They were pinkalicious and each time Emilia would join me she would pick the flowers and give them to Abby.  I spoke to Abby, wondering where she was and what was she doing.  I told her I picture her running and dancing with Jesus.  I wasn't finished with those words out of my mouth, when a beautiful yellow butterfly fluttered past me!  I believe that was Abby's way of saying hello!  

Recently, I travelled back to Cape Breton, the place where I grew up to attend my grandfather's funeral.  My favorite childhood memories of my grandparents were summer trips to their cabin, known as 'The Bees Nest'.  Their three room getaway overlooked a beautiful river and you can only imagine the gorgeous music it made!!  The day following his funeral we visited his place of solitude to release his ashes into the river.  I arrived at the cabin with my sisters a few minutes following the rest of my family.  I entered the cabin to say hello and then walked outside to reminisce my childhood.  I found myself overlooking the river, watching the current and soaking in the sounds of nature.  I envisioned twenty years prior, my Gramps fishing down below, my cousins and I swimming in the river and rope climbing the steep banks.  Then, something caught my attention and my brain was trying to register what I was seeing.  Below me, on the side of the steep bank, was something very peculiar and not what you would expect to see.  Stuffed in a bunch of vines and thorn bushes was a perfectly, still blown, intact, purple balloon!!  I couldn't believe my bulging eyes and I'm still feeling the effects of my discovery!  If you read an earlier post, The Purple Balloon, you would understand my reaction to seeing a purple balloon on the side of my Gramp's riverbank!!

This is no coincidence.  This is Abby's little miracle.

What does this message mean?  For me, Abby is letting her mommy know that she and my Gramps have united and that they are with me!!  

I hear Abby from time to time.  Last week we attended a memorial service for all children who passed away at Childrens Hospital this past year. We were able to honor Abby by saying her name and placing flowers in a basket on her behalf.  During the ceremony, I felt Abby's presence.  She was definitely with us, and she let us know through music!!  She's definitely my daughter, because she knows I love music!  Three very important songs just so happened to be played by various staff members of Childrens Hospital throughout the night.  

1) You'll be in My Heart 2) You raise me up 3) In the arms of an angel

Why these songs??  

Well, in the car on the way into Boston, my kids watched Tarzan.  "You'll be in My Heart" was sung by the Boston Childrens Choir which happens to be the theme song for Tarzan!!  What are the odds that we pick Tarzan to watch just before attending Abby's memorial service?

"You raise me up" is a no brainer!  If you went to my wedding, you would know why.  I chose this song to dance the traditional "father/daughter" dance at my wedding with my dad.  "You raise me up", popularized by Josh Groban was also my very last dance I had with my dad.  He died three weeks following my wedding due to a swift battle with cancer.  My nieces Melissa  and Astrid came with us to Abby's service at Childrens Hospital.  Melissa felt Abby too.  She said whenever she heard this song, that she would picture and see me and my dad dancing.  But not that night.  Instead, she pictured Abby and my Dad dancing, smiling and happy!!

"In the arms of an angel".  These words are very significant for Roberto and I.  When I resigned from my job, a going away party was held for me.  One of the gifts that I received was a stone ornament, an angel holding a baby.  This ornament was placed on my nightstand, but Roberto moved it to our Abby shrine in our kitchen following the day she met Jesus because we believe that this was a message from God and that she truly is in the arms of an angel now.  Not to mention, the day of Abby's wake, our niece, Melissa was inspired to write these words "In the arms of an angel" on our white board on our refrigerator.  These words are still there and I have no intention of removing them.  Lastly, if you remember in my post "The Purple Balloon", I mentioned that these exact words going to be engraved on Abby's grave marker.  I can't wait for it to be installed.

Am I fishing for these little coincidences?  Not a chance!!  I don't have the creativity to make all of this up!

It is in these little gifts that give me hope to help me live life.  Treasures that I hold onto to keep going.  

With the grace from God, I see, feel, and hear Abby.

 

Abby is without a doubt, dancing with Jesus and my Dad, playing and fishing with my Gramps, and

In the Arms of an Angel.

Forgiveness

I once heard Oprah quote the meaning of forgiveness on her show.  She doesn't claim it as her own, but I am unaware of who it actually belongs to:

"Forgiveness is letting go of trying to change what has happened".  

Abby's death is a complete shock, not only to me and my family but to her entire medical team at Childrens Hospital.  Even though the possibility of her death always lingered, we thought we escaped it!  Each day we spent with Abby, her nurses and doctors would happily report that she was doing so well!  They always had good things to say about her progress, despite her breathing spells.  And they would comment on how feisty she was!  (just like her Godmother, my sister, Joanie-Lynn).   I believe that Abby used her feisty personality to live as long as she did.  Abby's NICU team were simply amazing.  Abby brought smiles to their faces each and every day and they commented frequently about this.  Abby was such a little sweet baby.  They told us how much Abby made them smile and how such a good baby she was.  Sometimes I thought to myself, "yeah, you say that to all of your parents", but I do actually believe them!! 

Roberto and I tried, we really did, to focus on the positive feedback given to us, even though we could see her struggles.  We knew that her life was in jeopardy and we wanted to act fast.  Babies with CD are pre-dispositioned to have tracheostomies and we even tried to get the surgery before the 22nd.  However, the surgery was scheduled at the latest to be the 23rd, but thankfully they were able to get her in early.  I was so relieved and happy because it hurt so much to see her suffer.  We always feared that Abby's death potentially could have resulted from the trache istelf while at home.  Never did it occur to us that it could happen during the actual procedure.  The word shock is truly an understatement to describe how we feel, since tracheostomies are routine at CHB and are performed daily.  Babies and children travel all across the world to CHB to receive this procedure.  But the risks are there, and nothing is fool proof.  

 Two weeks ago, Roberto and I made another venture into Childrens' Hospital to speak with Abby's doctors and surgeons to discuss what actually happened to her the day she died.  This was our second trip since her surgeons couldn't attend the first meeting.

We had strong, mixed emotions about going into CHB.  The meeting was necessary and vital on so many levels.  Roberto and I felt that this was essential toward our healing process. We needed to face our fears.  We needed to face our fears of the medical persons who were responsible for Abby's life.  AND we needed to face our fears of a hospital that in the future we may need to walk into their doors once again for our other three children.  

Present at this meeting with Roberto and I were her social worker, Abby's two ORL doctors (they performed the tracheostomy, a Chief Surgeon and his Fellow), the NICU Director and her NICU doctor.  (I'd rather not name her doctors, since I would like to respect their privacy).

I had butterflies as we entered the NICU floor.  Those butterflies turned into sheer terror when we were greeted by the social worker when she told us that the team was waiting for us.  I was surprised by having those terror feelings, but then again, it was the same exact feelings that I had on March 22nd, the day when her surgeons came into the consult room to tell  us of Abby's response to the surgery.   An un-welcomed instant flashback.

We took a few moments to gather ourselves, sipped on some water, and entered the room.  Instantly Abby's NICU doctor and I embraced.  It felt good to see her again.  I don't know how to explain it, but I feel connected to her.  She and her NICU staff knew Abby.  Most of our family and friends didn't get to meet Abby but the staff were her peeps!  They witnessed and experienced her life!!  They are the only few who could describe her mannerisms, personality and temperament.  Abby was such a sweet old soul and I enjoy reminiscing Abby with them.

We then shook hands with the rest of the team and sat down.  Abby's NICU Doctor started the meeting.  She expressed that she was glad that we were there to discuss and question the events that took place.  She and the rest of the group acknowledged that this was very difficult for us, which in retrospect, the beginning of the meeting was the toughest.  Once we sat down, my heart rate slowed back down and I could somewhat breathe again.  She further exclaimed that this meeting was just as important for Roberto and I as it was for them.  All of us needed closure.  She asked if we had any specific questions and how did we want to proceed and go on with the meeting.

I replied that I didn't really have any specific questions and would just like to hear the events that took place.  I also wanted to express my own thoughts and feelings before we got started.  I expressed the following (probably not verbatim but close enough) "I just want to share my feelings about what has happened.  I have peace over what has happened with Abby.  I have peace because I believe in God.  I believe that God has a plan which is one that we cannot control.  We fought very hard for Abby but God had a different plan for her.  And with that, I forgive you for what has happened.  For the record, we felt forgiveness immediately the day she died, but we were in our own space and couldn't express it that day in the OR.  I really wanted to, but just couldn't.  But even though we have peace, do we hold you responsible for Abby's life?  Yes, we do hold you responsible. But forgiveness follows immediately.  We are here to find out what happened because we do have questions about her surgery.  I forgive for me.  Because I believe in God".

Abby's surgeons listened and then replied, that on behalf of himself and his Fellow, that that day was the worst day of their professional careers.  He also acknowledged responsibility for Abby's life and acknowledged that not only did we trust them, but that their NICU staff trusted them.  The day she died, they went up to the NICU to speak with her nurses and team to discuss the horrible news, since the NICU considered Abby their baby as much as our own.

His Fellow further commented that he thinks about Abby at least twice a day.

We knew that they felt horrible.  How could they not?  And I knew that they were genuine when speaking of their thoughts and feelings.  Looking back at those moments when they had to give us the terrible update of her surgery makes me shiver.  Someday I will write about those moments, but for now, I will tell you that it felt like being in a nightmare, one that I am still waiting to wake up from.

I told the Fellow that knowing that he thinks of Abby daily made me happy.  Because it is thru those memories that help me keep Abby's spirit alive.

We then learned of the details of her surgery.  

Abby had her g-tube (feeding tube) put in place and that went smoothly.  The ORL team was present since they had to intubate her for it.  The g-tube doctors left the OR and then the ORL team took over and prepared her stoma.  Then the horror started.  It is my understanding that when her surgeons removed the intubation tube and  inserted her trache tube, Abby de-sated.  She clamped down on her airway and it became obstructed, due to her tracheomalacia (floppy windpipe).  This is the very reason why she needed the tracheostomy in the first place!

What happened after that was chaos.  But I do know that Abby's airway completely collapsed, due to what they believe, from lack of natural air pressure.  They tried to provide artificial pressure from the bag, but this wasn't effective.  They also gave multiple attempts of replacing the intubation tube and trache tube, giving her x-rays to confirm their location.  As a result of these numerous attempts, she also ended up with  pneumothorax and a collapsed lung.   All awhile, her heart giving out because it was all too much for her to handle.

We were told that there were at least 20 doctors in the OR trying to save my baby's life.  She died at 2:45pm.

Roberto and I assumed that they tried to save Abby, but after hearing the specific details of what happened made us believe that they fought for her.  I picture boxers in a ring match!

And hearing all of this confirmed one thing.  My faith.

As hard and as much as they tried to protect Abby with their special skills, medical interventions and sweat, Abby made up her mind and wasn't going to change it.  God's plan was in action.  No doctor could have prevented it.  And they knew this.  They told us that Abby's response to the surgery was not typical!!  All of their efforts should have rendered a different outcome.

I wish that was the case....

I am able to sleep at night.  I am able to do so because we did everything we humanly could to protect Abby's life.

People tell me that I am so strong.  That I am amazing.  Well, I don't feel strong nor do I feel amazing.  But I will say this.  What we did was amazing!!  We chose life!!  No matter what, choose life!!!

This experience cannot be lived alone and so daily I ask God to carry me through this.  HE does.

Before we left the meeting with Abby's medical staff, I revealed to them that Roberto and I prayed for them. We prayed for them the day Abby met Jesus.  And we continue to pray for them.

"Forgiveness is letting go of trying to change what has happened". 

It is now two months today since Abby's passing and we are just as blown away that Abby never woke up from her surgery today as we were two months ago.

We still receive mail in Abby's name.  We still make phone calls on her behalf.  We make e-mails on her behalf.  We are still in contact with administration folks at the hospital for various reasons.  Roberto had been asked "how's the baby" from work acquaintances for a month following all of this.  We received her death certificate recently.  When asked how many children do you have, I reply four.  I am considered an angel mom, because I have a baby in heaven.

The intensity has lessened, but the reality of it is just as raw as the day it happened.

As difficult as these constant reminders are, I wouldn't change it.  Abby is my daughter, my baby, my little Saint.  With all of my pain, tears and smiles, this is my life, these are my shoes and this is what God has asked of me.

A Tribute to Abby

I want to share a video that I created of Abby that depicts her short but sweet little life.  It was very difficult to create this, but I am so pleased with it.  I hope you all enjoy.


http://www.youtube.com/watch?v=xxYhfIplCBo

Abby's Reflection

These are words spoken by Roberto's brother, Luis at Abby's funeral only three weeks ago....

Abby Rose

Abby's short life with us 
reminds me of poetry;
Short and sweet,
Just a few words, 
just a few breaths, 
but powerful and deeply felt.  

And like poetry 
Abby is also Memorable! 
She will be remembered 
in so many hearts 
and in so many ways.

Abby is one of my heroes
She is My New Arc Angel:

The name Abby, short for Abigail 
comes from the Hebrew word 
for Father, 
Abba.

Abby in Hebrew means Father's joy!
And our Heavenly Father 
surely rejoices in her, 
his tiny and tender 
little rosebud.

Abby is also Roberto's joy. 
A piece of Heaven on earth!

Roberto, 
Kim is right in calling you a Rock! 
And like St Joseph you quietly stand 
Mirror of Patience 
& Pillar of your beautiful Family!

And Abby is that tender 
and little rosebud 
which bloomed mysteriously 
in between your rock
and Aimee's garden- 

It reminds me of a poem written by Helen Steiner-Rice
Which I would like to share with you
Titled

The Tiny Rosebud God Picked 
to Bloom in Heaven 

The Master Gardener
from heaven above
Planted a seed
in the garden of love,
And from it there grew
a rosebud small
That never had time
to open at all.
For God in His perfect
and all-wise way
Chose this rose
for His heavenly bouquet,
And great was the joy
of this tiny rose
To be the one our Father chose
to leave earth's garden
For one on high
where roses bloom always
And never die.
So, while you can't see
your precious rose bloom,
You know the great Gardener
from the upper room
Is watching and tending
this wee rose with care,
Tenderly touching
each petal so fair.
So think of your darling with angels above,
Secured and contented and surrounded by love,
And remember God blessed
and enriched your lives, too,
For in dying 
your darling brought heaven 
closer to you!

And I would add
That in both
Living and dying
Abby brought Heaven
closer to all of us!!!

I thought she had completed her mission
And now I realize that her mission has just begun
And it's still here with us

Abby is still doing her little miracles!!!

The Purple Balloon

This past weekend, we finalized Abby’s grave marker and are happy with the design.  It will have her name, her birth date, death date, a quote “In the Arms of an Angel” gifted by my niece Melissa and a purple balloon!

As I’m sure you know, balloons for children are so much fun and for Abby's two celebration days, I wanted balloons in her honor.   My kids love balloons; they love catching them, blowing them up and popping them, all for a good laugh.   So what better way to create an atmosphere for children than to have party balloons as the theme!  We were going to go out and buy the balloons and set them up ourselves, but that felt overwhelming and burdensome.  (Imagine transporting 23 helium balloons in everyone's cars to the cemetery!)  Not to mention, there was no time.  So Roberto suggested we order them from a local balloon shop in town , "Balloons all Over", so off we went during our planning and preparation for her services.  The owner (I assume it was the owner) was sweet.  I explained that I wanted balloons for the funeral home, the cemetery and the church hall.  I specifically wanted pinks and purples.  I was worried about how they would look but she took care of the design.  She said "I just delivered balloons for three bar mitzvahs this morning, I've got this".  Thank goodness.  One less thing to have to decide and I was in a very allowing mood at that point!  When it came time to pay for them, I said "so when do we pay for these?".  Her response was "I'm all set".  I was a bit shocked and said again, "no seriously, when do we pay for these?".  She said " You are going to make me cry....I have four healthy kids and I can't imagine going through what you are going through".  She started to cry and I gave her a big hug and replied "Thank you so much.  That is very generous of you!!!".  We walked out in disbelief.  We were awe struck.  We strongly believe that what had just happened was because of Abby and realized that two gifts were given by her during this moment.  One was for me and Roberto.  Here we are burying a baby.  Financially that is a big undertaking.  Abby was telling us not to worry.  I've got this one covered!  The second gift was for that sweet woman.  Here she is, giving what God asks of us daily, an act of charity to two complete strangers during a very difficult time in their lives.  I am forever grateful for this act of kindness.

The day of the funeral, as we drove to the cemetery I saw an employee from the funeral home holding Abby's 23 balloons with conviction and strength!  23 balloons to represent the 23 short days of her life.  It was a boisterous gusty day.  He was so intent on not letting them go.  When we arrived, Father Houston gave a small prayer to conclude her blessings.  Then the man gave Roberto the balloons.  As the five of us held the balloons, I let my children know that Abby will be shining upon us always and if we ever needed her, to simply pray to her.  Then we counted down and let the balloons go.  They were scooped up by the wind instantly and all of a sudden one purple balloon let go from the rest of the pack.  My mom shouted "THERE SHE GOES!!"  It was breathtaking.  Everyone there believes that the single purple balloon in some way was Abby.  I am certain it was!! 

The book, “The Purple Balloon” was recently given to us by Roberto’s oldest brother, of which all proceeds go to critically ill children.  The book is about children, knowing that they are going to die.  I guess when children are asked to draw their feelings about their pending death, they often draw a purple or blue balloon!!  Abby let go of a single purple balloon that day.  Isn’t this uncanny?  The parallels are just incredible.  It just validates all that I believe in and my heart is tickled knowing that Abby sent us a message of love using her purple balloon.  

All of us visiting Abby's grave on Easter morning.  I wish we were visiting her in the hospital instead.  :(

Dearest Abby

Dearest Abby,

Do you remember our last talk the night before your surgery?  I do.  So vividly.  It amazes me really and I will never forget it.  I explained to you that you were going to have a very important surgery.  A tracheostomy.  I further explained to you that you needed it and that it would help you to breathe.  I then told you whatever happens during your surgery was between you and God and that I will trust in Jesus.  I sang my favorite lullaby to you, Silent Night.  Then I kissed your forehead over and over and laid you down for the night.  That was the last time I held you in my arms.  

Prior to the day of the surgery, I had such anxiety, mostly due to fear of the unknown.  My worries were never ending it seemed.  But the day of the surgery I felt such peace.  As we walked in the NICU, we saw your tracheostomy supplies and a doll with a tracheostomy to show us what a baby would look like.  I picked up that doll and I wasn't afraid.  I was actually excited to be here finally.  A chance to take you home.

Before the doctors whisked you away, we had Father Bob come to your bedside to pray with us.  I wept.  I wept for joy.  Joy that this was the beginning of you finally coming home!   You left the NICU at 10:45 am and you never returned.

While I had peace those last hours of your life, your dad was like a wild beast!  We switched roles that day.  I am usually the impatient one, worried about everything while your dad worries about nothing... but not that time.    He  knew something wasn't right when we weren't receiving updates from the liaison nurse.  I told him to relax that everything was going to be okay.  I wish I was right.

Abby, never did it occur to me that you would chose eternal life over the life that I wanted for you.  I wanted you to come home with a tracheostomy. I wanted you with me and your family.  But God wanted you in his home with his holy family and you chose perfectly.  I am so proud of you Abby.  So proud that you chose God.

But, I have to admit, it is extremely difficult for me to comprehend all of this.  My understanding and acceptance glides back and forth.  I keep telling myself  "I don't understand.  I don't get it".  With everything that I have been through; the initial diagnosis, the transfer of my care to B&W at 37 weeks, and then your arrival.  All wonderful successes.  And then this?  It makes no sense when I think of myself but perfect sense when I think of you and how difficult it must have been for you to choose what you did.  You brave little rosebud.  I can't imagine what it is like for any child to grow up with all of the complexities that CD would invite.  And here you were, given the chance to escape that!  And you did.

As I cry as the days go on, I try to remind myself, "she chose this".  Somehow, I believe that you knew what was happening even though you were only three weeks old.  Somehow, you knew that your time on earth was limited.  You had such a significant presence about you.

As I look back on the day you left me, I imagine you entering the gates of heaven with song and dance and glory!!   I imagine that you went running straight into Jesus' arms.  It gives me joy and comfort knowing that you are in heaven.  My baby, pure and free from sin.  My baby, who I used to pray for morning, day and night...I now pray to.

I miss you. I miss holding you.  I miss singing to you.  I miss smelling you.  I miss everything about you.

Love,

Your Mommy

I am Abby

The following are the words spoken by Abby's aunt, Kim at her funeral and I want to share them with you.

I am Abigail Rose Bachman-  Be it done unto me according to your word...


I am Aimee Bachman - A handmaid of the Lord


I am Roberto Bachman - The Rock


Together they have been walking a path of faith, hope and courage unknown to most...

Since the moment Aimee and Roberto found out about Abby's condition, they accepted every new development, setback, and joy with their hearts wide open, all the while, keeping everyone up to date with her progress, before her birth and after.  We all watched as they forged ahead with faith, resolve and strength.  Every mother I have spoken to, without exception, said the same thing "I don't know how they are doing it".  And now they are burying their baby girl and I ask again "how are they doing it?"

I have had the absolute honor of being at Abby's first birth day and what a party it was!  A miracle!

I was also given the profound gift of being there on the day she died...again, a miracle!

In Aimee and Roberto's last hour with their little girl, Aimee generously asked me if I wanted to hold her, I couldn't wait.  A big YES!  As I looked down at her beautiful, perfect face, I was holding her body only, her spirit was in heaven, I knew I was holding the daughter of a most perfect God.  I felt the majesty and greatness of our creator.  I closed my eyes for a moment and I saw Abby in an open field with the greenest grass and wild flowers everywhere dancing and twirling with Jesus and other children, I knew she was okay...And I felt this incredible sense of peace.

Who can know why Abby was here for such a short time, I do not...

What I do know, is that in her three short weeks of life, without lifting a finger, thinking a thought, Abby touched each one of us in a different profound way.

Emilia, Lucas and Lily, remember this: your Mommy and Daddy have given you the biggest gift ever, a baby sister angel in heaven and she will be there with you and for you all the days of your life...

Aimee and Roberto:

Because of your YES, I prayed more...

Becuase of your YES, I cried more...

And Because of your YES, I love more...

So, I thank you for the gift of Abby and although she has left this earth, I have a sneaky suspicion she's only just begun her magic!  God Bless you both and your family.  Hail Mary, full of grace......

I Praise you in this storm

This is a song that a mom from my support group shared with me.  I love it.  It is powerful for me and I want to share it.  I just play it over and over trying to find comfort in what has happened.  It makes me cry (but everything makes me cry right now!).  Hope you enjoy it.


http://www.youtube.com/watch?v=MUWbmtbzDno

Pictures

The aftermath

Burying a child is easier than living daily without her.  At least that is my experience, if you could even imagine that.

Abby's wake and funeral were beautiful.  If perfection exists, it did those two days.  We knew we wanted to celebrate Abby's life and since we have three small children we wanted to honor Abby in a way that they could understand and be a part of.  So we decided to have balloons as a theme.

We scrambled planning for what was the most difficult event of our lives.  Even though we knew that there was a significant chance that Abby wouldn't survive, I couldn't focus on that.  I lived in the small chance of her making it.  And I really believed she would.  Having surgical difficulties was not expected.  My poor little angel.  I can't imagine the pain and suffering she endured.  I am so glad she's not suffering anymore.  But I do miss her.  Waking up each morning is like re-living that dreadful day.  I sleep with a minnie mouse that my mom gave her; in some small way it gives me comfort.

Many friends and family gathered around Abby at her wake.  There were beautiful flowers and balloons.  We played our sleepy Baby Jesus lullaby music.  The children were so curious and would visit with Abby multiple times.  Many of our family members didn't get the chance to meet Abby, only a small few.  Our children were and are still amazing about the whole thing.  They are very 'matter-of'-fact' about Abby dying.  They touched her and spoke to her.  They see us cry and mourn her and in their own way they mourn too.  Our friends brought their children to say goodbye which I loved. The energy in the room was peaceful and calm.

The funeral was amazing.  So peaceful and calm also.  Our priest from our old parish, Father Dennis, surprised us and gave the funeral with our new priest, Father Houston.  Apparently they are friends!  It meant the world to me to have Father Dennis there.  He baptized Lily and Lucas and I knew it was God's way of telling us that everything will be okay. I haven't seen Father Dennis since we both left our parish almost two years ago.  I hold a special place in my heart for him.  Abby was baptized at Brigham & Women's five minutes after she was born.  I had a c-section and could not directly witness it.  But I could hear the priest whisper the blessings and that was enough for me.  We couldn't have Abby's god parents there nor were there ceremonial mementos available to remind us of that day.  But as part of her funeral, we received a baptism candle and baptism cloth to remind us of her baptism.  Special, very special.

Abby's reflection by my sister-in-law and brother-in-law was written and spoken magically.  The music gave me strength.  I sing in the choir but took a little sabbatical since being pregnant.  I couldn't even sing a note near the end of my pregnancy at mass.  I think it is partly because my lungs were squished into oblivion and also because I didn't have the heart.  But somehow I got my breath long enough to sing for Abby.  I felt joy singing God's praise again.  It is definitely my way of showing my love to God.  Freddie the Leaf.  A book written for children about death.  I highly recommend it.  Silent Night.  A lullaby we sing to our children each night before going to sleep.  Abby heard me sing it every night as she was inside of me and I wanted it sung for her one last time.

The cemetery.  Very powerful.  As we drove to the cemetery I saw an employee from the funeral home holding Abby's 23 balloons with conviction and strength!  23 balloons to represent the 23 short days of her life.  It was a boisterous gusty day.  He was so intent on not letting them go.  When we arrived, Father Houston gave a small prayer to conclude her blessings.  Then the man gave Roberto the balloons.  As the five of us held the balloons, I let my children know that Abby will be shining upon us always and if we ever needed her, to simply pray to her.  Then we counted down and let the balloons go.  They were scooped up by the wind instantly and all of a sudden one balloon let go from the rest of the pack.  My mom shouted "THERE SHE GOES!!"  It was breathtaking.  Everyone there believes that the single balloon in some way was Abby.

We had a lunch afterward back at the hall.  I'm so glad we did.  We danced, we cried and some of us made amends.  Some of Abby's many fruits.  We danced to "Somewhere over the rainbow" in Abby's honor.  It was the perfect way to end her celebration.

Abby's Services

Abigail R. Bachman

Northborough – Abigail “Abby” Rose Bachman, infant daughter of Roberto J. and Aimee B. (Beaton) Bachman, passed away Thursday, March 22, 2012 at Childrens Hospital, Boston.

Abby will be sadly missed by her parents and three siblings, Emilia, Lucas and Lily, all of Northborough; her maternal grandmother, Laura Beaton of Nova Scotia, Canada; paternal grandparents, Andres and Ileana Bachman of Tennessee; many aunts, uncles, and cousins.  She is predeceased by her maternal grandfather, Richard Beaton.

Abigail means “father of joy” in Hebrew and she brought light and joy to all of those who have known her, cared for her and embraced her life, even if they didn’t get the honor to actually meet her.  Abby’s time here on earth was too brief, but her eternal voyage has just begun. 

Calling hours will be held on Sunday, March 25, 2012 from 2:00pm to 4:00pm in Hays Funeral Home, 56 Main Street, Northborough, Ma.  Abby’s funeral Mass will be held on Monday, March 26, 2012 at 10:00pm in St. Rose of Lima Parish, 244 West Main Street, Northborough, Ma.  Burial will follow in Howard Street Cemetery.  In lieu of flowers, memorial donations can be made to The Arc of Greater Haverhill-Newburyport, 57 Wingate Street, Suite 301, Haverhill Ma 01832.  For on line condolences, please visit www.haysfuneralhome.com.

Terrible News about Abby.....

I am full of sadness, sorrow and despair.   I can't sleep anymore.  I can't turn my brain off.  My head is pounding.  So I decided to share what needs to be shared even though doing so makes it that much more real of what happened to my sweet little Abby.

Abigail Rose Bachman, only 3 weeks old, born February 29th, 2012 died on March 22, 2012.

Abby passed away due to complications from her tracheostomy surgery.

I miss her so so much....

Please continue to pray for Abby and help her make her journey home.

Aimee

Moving Forward

Abby gave it her all!  What a strong little cookie!  She would do so well if it wasn't for her crying spells.  But with tough discernment, we have decided to proceed with the tracheostomy for Abby.  The trache will give Abby a safer airway since hers becomes unsafe during these really tough blue spells.

Making this decision was tough, but then again, was so easy.  When I think about myself and all of the trials and tribulations that will come with it and the demands on me, I get overwhelmed and think that it is the end of the world.  How can I do this?  My life is over.  But when I hold my little baby, watching her struggle to breathe and survive, the decision is simple, give her the trache!!

Abby's surgery today is at 11am.  Please continue to pray for her!!!  With love, Aimee

Setbacks

Today is a 'setback' kind of day.  Today we received the news that Abby is back on CPAP.  I'm angry but not surprised really.  I have mixed emotions about the whole thing.  I am relieved.  I am scared.  I am pissed off. I am sad.  I am overwhelmed.

Holding Abby has been challenging with her breathing spasms.  In order to hold her and for her to be relaxed and breathing at 100%, she had to be asleep with her head tilted all the way back with her body facing toward you and kind of down.  Awkward and not very comforting to watch to say the least.  While in her crib, she has to be on her side.  If on her back, she desats and her windpipe gets blocked and her breathing becomes jeopardized.  As a mother, this is awful to experience.  I am always on edge holding her, watching that darn monitor and worried shitless if and when it will beep again.  The nurses try to reassure me and say she's doing great, but this is not quality, at least in my opinion.  I have been noticing that she has been struggling for the past week and expressed my concern with the doctors at our family meeting and they told me to wait and see the results from the sleep trials.  Her sleep trials got bumped up early and happened on Tuesday night.  We are waiting to receive the results from that and I hope we receive it ASAP.    But in reality, it takes a week and won't be until next Tuesday.  I am impatient and this is challenging, waiting, waiting and more waiting.  Sigh......

Our Family Meeting

Today we had a family meeting with Abby's doctors and nurses to talk about her care over the next few months.  It was decided that she will undergo surgery to have a feeding tube surgically placed into her stomach.  They felt that this is the best way to feed Abby at this point.  During her feeding trial last week, Abby failed.  She can't get the coordination to suck, swallow and breathe all at the same time, the poor little thing!  It is a result of her tracheomalacia.   This will definitely be different for us; depending on a machine to feed our baby.  We are scared and apprehensive but grateful.

On Thursday night, Abby will have a sleep test done to see if she is breathing efficiently and getting enough oxygen/air support.  She is still breathing on her own but she does have episodes that when she cries, she has a really tough time getting enough oxygen flow.  So the sleep test will give the doctors a better indication than the standard monitors that they have her on now.  The way they explained it, Abby may not be getting enough oxygen on a small subtle scale that doesn't come up on the monitors and it is enough to pose problems for her without us knowing or seeing it.  To me, Abby works real hard to breath on her own and I am hoping to get a better understanding with this sleep trial.  It will be after this sleep trial that they decide if she will need a tracheosostomy or not.

Regardless, I am scared out of my mind.  Abby's vocal chords are working properly. She just doesn't have the breath power to make sounds so when she does cry we can't hear her. I am scared that if she does come home without the trache, that she will not breathe and I wouldn't know it.  They told me she would come home with a monitor but those aren't fool proof!!  But they reassured us that they would not send her home unless they are certain that she is safe and that we are comfortable and ready for her to come home.

What a blessing though.  We are talking about when she does come home!!  How amazing is that!  She is such a little darling.  Her eyes are big and round and I love it when she is awake and she just looks at you with such love!!  It's almost as if she speaks to us with her eyes.  Like she's saying, I'm here momma, just love me!!  And oh how I do!!!

Roberto and I feel like first time parents!!  Abby's needs and care will be so much different than our first three.  We feel like we are starting from scratch.  Abby will not be bottle fed, at least not for the first few months and with a possible trache still, there is so much new learning to do!  We will need formal Infant CPR training.  Date nights are probably going to be put on hold for a bit until we are comfortable with her and her needs.  OMG!!!  But I did have fun today shopping for her!  I was able to nest a little bit.  I put it off, not knowing what to expect.  It was better for me to just take things slow, but she is doing fantastic, beating all odds, and since I am feeling much better, we went shopping for her.  Oh how I do love to shop!  It really is dangerous having a new Babies R Us store in my own town!  I told Roberto this and he threatened to take my credit card away!  LOL!  I said no way!!  Heehee.

Everyday we hear of a neighbor, or a niece of a friend, or a friend of a friend praying for her.  It amazes me really!  The power of prayer!  The amount of loved ones and friends that do pray for her.  It tickles my heart and makes me so happy!!  That combined with switching doctors at 37 weeks and going to a hospital where they listened to us and respected our wishes to get the best possible outcome for us.  Where would Abby be?  Seriously.  I don't dwell on it, but just think about it!!  Crazy.

We gave Abby life with the grace of GOD!!   I couldn't have done it without him.  "Trust".  "Let Go and Let God".  "One Day at a Time".  "Trust in Jesus".  These are my little prayers that I say to myself over and over again, especially when I get down.  I don't know where I would be without them.  I also pray for the graces of strength and courage to give Abby all of the love and support that she needs and deserves!!  We have a long road ahead of us, but I am so fortunate to have my faith and support of my family, friends and community.  Thank you!!

No more CPAP!!

Thank you to everyone who has been praying for us, near and far. We appreciate you spreading the word about Abby and having your friends and families pray for us. Roberto and I are forever grateful. We believe that your prayers and intercessions are one of the main reasons Abby is doing so well. Abby is a miracle! She is beating the odds!! According to the statistics, she shouldn't even be here and here she is putting up an amazing fight! Praise God! Praise Jesus!!

Abby is doing fabulous! Last night, the team removed her CPAP!!! YAY!!! They felt that she is doing well on her own and they are monitoring her closely. It is up to her to show us if she can go a long time without any assistance. So far she's been off of it for about 20 hours and she's doing great. She doesn't like it when she's on her back or when her chin is forward, which is typical for babies with tracheomalacia. But we are hoping that she can build tolerance!!

Tomorrow a feeding specialist will assess Abby to see if she is ready to start feeding via bottle versus the feeding tube!  This is super exciting!  

Also, tomorrow we are taking the kids to meet her for the first time and they are super excited! I am too! :)

Mommy and Abby!!

In Loving Memory....

As I mentioned in a previous post, I am a member of a support group for CD families.  Well in the group, there were three of us that were due with our babies weeks apart.  I received news recently that baby Brayden passed away, being only 3 days old and baby Mateo passed away being only less than one day old.  My heart goes out to their moms, Kristen and Anna and to the little babies.  I have no idea what it is like to lose a child.  

Please pray for Brayden and Mateo and their moms and families.  My heart aches for them.

Our Adventure at Children's Hospital

We had a great yet exhausting day at Children's Hospital!!

Abby's transfer to Children's was a success!!  Her procedure went extremely well also.  She had a Bronchoscopy to check out her airways.  They determined that she has mild-to-moderate tracheomalacia, which is fantastic!!  So what does that mean?  It means that the only part of her trachea that is floppy is the mid section, which they feel is great.  Also, when her windpipe does collapse when she breathes, it doesn't collapse and close completely, it leaves an opening.  The problem however is that her windpipe should be shaped like a generous O  but Abby's is more like a horizontal narrow oval, making it difficult for her oxygen to pass through.  

The plastic surgeon was also present during the procedure.  They confirmed that Abby has "Pierre Robin Syndrome".  This is common for Campomelic Dysplasia babies.  Pierre Robin is where the babies jaws are small, their tongue falls back into their throat, and they have cleft palettes.  Well in Abby's case, again, she has a mild-to-moderate case of Pierre Syndrome.  She does have a cleft palette, but it is small and it is deep in the back of her throat.  They don't see it as an issue right now, but they will close it up when she is older.  Her tongue does not fall back into her throat.  They told us that her tongue is tongue tied which is helping to keep her tongue forward.  Kinda cool!

The orthopedist was in to see her this morning.  They are going to start physical therapy for her.  We will get more information from them in the next few days.

So the plan right now is to keep her on her CPAP.  They reduced the setting from a 7 to a 6 to a 5 this morning and she is doing well with it.  They are going to watch her to see if they can ween her off the CPAP and reduce her dependency of it.  She is feeding well.  Before the procedure she was up to 1 oz but had to stop for the procedure.  She is now working her way up to the 1 oz again.  I'm sure she is quite happy about this.  She was a bit fussy without getting fed and I'm sure she's now feeling much better!

Roberto and I are hanging in there.  It has been stressful, overwhelming, exciting, and emotional.  Roberto and my mom have been fantastic in taking care of me and the kids.  Thank God for them!

It is hard to believe that Abby is one week old.  I can't imagine where we would be had we not transferred our care over to Brigham & Women's.  With God's grace we were given the best care and continue to receive the best care at Childrens.  God also gave us such a beautiful gift.  One that I hope I never take for granted....

Update

We are headed to Children's Hospital tomorrow.  I am very pleased about that!

Tomorrow Abby will have a few procedures done tomorrow at Childrens' Hospital.  They are going to sedate her, take the scope and put it down her windpipe to check the strength/weakness of it.  They told us that babies this young could have respiratory problems as a result of being sedated and that Abby has a higher chance of having to go back on the breathing tube.  This is one of those things where we get two steps forward and one step back.  Please pray for Abby and pray that she has the strength and perseverance to avoid going back on the breathing tube!!  And if she does, may it be for only a short time!!

This video was taken when Abby was taken off of her breathing tube and before her CPAP.  A small window of time without any gadgets!!

Rough Day

Today we dove deep into the abyss and then climbed mountains.  What a day.

So yesterday the doctors took Abby off of the breathing tube.  She is not oxygen dependent and her lungs are in great shape.  It is her windpipe that is causing her problems.  So they took her off the breathing tube to see how she would do on her own. She was able to breath on her own for about three hours.  They then decided to put her on CPAP.  This helps keep her windpipe open as she breaths.  It is an apparatus that goes into her nostrils and adds just a little bit of pressure to assist her.

It is difficult to see Abby with the CPAP on.  It looks horrible even though it is much less evasive then the breathing tube.  I cried and I cried and I cried leaving her last night and then more crying this morning.  It is an experience that I do not wish on anyone.

This morning was trying.  They did not have a definitive plan for her at that point at I was very frustrated.  They 'talked' alot about what may happen with regards to tests and expectations but no concrete solutions were provided until our family meeting this afternoon.  Finally some answers!

So on Tuesday Abby will have a procedure where they will put a scope down her windpipe to rule out if she has a 'floppy windpipe' or not.  She will see a plastic surgeon to look at her face, tongue and throat to see if there are any complications there.  She will see an orthopedist on Monday to do tests on her bone structures.  I am so glad that some things are finally going to happen.  It's now not a 'maybe' she'll have these things done and I can look forward to next week.

The best part is that we are transferring her care to Childrens Hospital Boston sometime next week.  Brigham & Women's just thought it made more sense since  most of her care will need to be done there with all of their specialists.  Brigham & Women's and Children's Hospital share coordination of specialists.  If Abby only needed one consult, she would stay with BWH but since Abby has a  whole wide range of special needs it just makes sense to transfer her care over.  I received this news at our family meeting today and was tickled pink.  Finally some good news!!

So Abby is doing better tonight.  She is able to handle her cleaning and transitions of the CPAP.  She doesn't crash as much or get as worked up about it.  It can be really scary watching the nurses and doctors work on her and see her stats flux and hear the beeps on the machines!!

My biggest heartache is not being able to hear her crying.  Since she is on these machines it prohibits her from making much sound.  You can see her crying but can't hear her and I think that is super sad.  :(

My biggest blessing is being able to hold her and sing to her!  Awesome!!

Please continue to pray for her!!

My little angel

Abigail!!

Happy BIRTH-DAY Abby!!

Well it is official.  Our family size has grown to a six member family!  So happy and blessed!

Abby was born on February 29^th, 2012 at 10:20 am.  She weighed 5lb 13oz and 16 inches long.   February 29^th was a special day for Abby.  Here’s why…it is said that 1 in 1,461 babies are born on Leap Year.  Then 1 in 80,000 babies are born with Campomelic Dysplasia.  So that makes Abby a 1 in 116,000,000 babies born with CD on Leap Year!  LOL.  If that’s not enough, she was also born on Rare Disease Day!  What a special day to mark the day of her birth!!

Abby is doing well.  She is on a breathing tube.  She is not oxygen dependent but needs a bit of help with the inhaling/exhaling since her respiratory system is weakened.  But they are positive and we will see how she does in the next couple of days! 

Aside from her left foot, her extremities look ‘normal’ to me and Roberto.  She is on the smaller side, only 10^th percentile but there are even smaller babies in the NICU than her.   They plan on doing a round of tests to see the extent of her condition but that will take a few days and hopefully we will be able to have a family meeting to plan the next phase.

It’s tough not being able to hold her.  I am not used to this.  I am used to having the baby with me and waking up to feed her.  It felt quite lonely at one point during the wee hours of the night when the nurse came in to check my vitals and no baby.  I fell apart.  But was grateful to fall apart because I had been holding it in and it felt sooo good! 

So the c-section went.  It was neither good nor bad for me but the best thing for Abby!  It felt strange and weird but I am recovering well.  I am up and walking and got my own PJ’s on which makes me feel human again! 

Thank you for your continued love, prayers and support.  I know I keep saying that but I really mean it.  I believe that Abby is doing so well because of all of the prayers that are being prayed for her.  She is a miracle!!

Love Aimee