Saturday, March 31, 2012

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.


Friday, March 23, 2012

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


Thursday, March 22, 2012

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

Thursday, March 15, 2012

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......




Monday, March 12, 2012

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!!

Thursday, March 8, 2012

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! :)







Wednesday, March 7, 2012

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....









Monday, March 5, 2012

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!!


video


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!!

Friday, March 2, 2012

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!!







Thursday, March 1, 2012

My little angel




Abigail!!

video

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 29th, 2012 at 10:20 am.  She weighed 5lb 13oz and 16 inches long.   February 29th 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 10th 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