A Story I Identify with

This past Sunday was the first Sunday of the Advent, and the first candle represents hope.  Our Pastor said "Hope is like light in the darkness." Each time I hear or see that word somewhere I feel like Abby is reminding me she's still with me.

I have a lot on my mind right now, but it all seems to be stuck in my stomach at the moment.  I always seem to have something to say, but right now anything worthwhile seems to get choked back.  Instead, I'd like to share a very well written Perspectives series on the HoPE blog, written by a mom who lost her son a few years ago.  She had a bit longer with her Arthur than we had our Abby, though far less time to prepare for his arrival.  Links to the first two entries are listed below. 

The Thirteen Days of Arthur

We got by with a little help from our friends

If by any chance anyone from Women & Infants reads this, I'd really REALLY like to thank Dr. Bender and NICU nurses Patty and Nancy who came to Abby's service.  That was unexpected, and it meant to much to us that you cared enough to see Abby all the way through.  We couldn't say enough about the doctors and nurses who cared for Abby; they were truly wonderful. Thank you.

Remembering to be Thankful

Tomorrow is Thanksgiving, and it is also Matt’s birthday.  As you may expect, we are in no mood to celebrate anything, but we’ll go to dinner for Connor.  He deserves to have the normalcy of Thanksgiving dinner with family.

Despite the fact that we’re sad in ways that our language is insufficient to describe, there are always reasons to be thankful.  I’m putting some in writing to remind myself should I forget.

I’m thankful for…

• Our family who has shown us immeasurable support through all this.  I don’t know what I would do if my mother didn’t come over each day to make sure Matt and I are still functioning and taking care of Connor.  
• Our friends who have shown support but respectfully given us space to grieve. 
• Our Church community for making impossibly painful arrangements as easy as possible, and for sending over endless dinners along with their prayers.
• The Families for HoPE organization and the entire HoPE community of parents, children, and angels.  As another mother mentioned on the HoPE blog, they really helped us prepare for Abby’s arrival.  
• The Now I Lay Me Down to Sleep organization and Alex Terry, the photographer they sent to the hospital to take our beautiful family photos before Abby passed away.  I was nervous about having a photographer come, but Matt and I are so, so grateful for the beautiful photos she took.  What a gift to give a family going through this.

One of the many beautiful messages we’ve received said I reminded her that motherhood is an honor and a privilege, which we sometimes take for granted. How true that is!  I am most thankful for my husband and son.  Instead of pulling and pushing against each other in our attempt to get by through our sadness, we’re taking turns being strong so we can lean on and hold each other to get through it. 

Coincidentally, November 25^th is also National Holoprosencephaly Awareness Day.  One year ago I had no awareness of this condition whatsoever.  I sincerely thank those family and friends who made a donation to the Families for HoPE in Abby’s name.  Families receiving an HPE diagnosis need this organization for resources and support.

We HoPE your family has a happy and blessed Thanksgiving.

A Few Good Men...Abby's Funeral Day

Matt surprised me two nights ago when he told me he wanted to read the eulogy at Abby’s funeral mass.  Parents just don’t do that; but he really wanted to.  He told me that I took care of her for 9 months and most of her 4 days of life; he wanted to do this as his gift to her.  Matt said, “If you write it, I’ll read it”.  So, together we sat down and talked about what our girl meant to us and to our family.

My Connor is just four years old.  He’s spent the past two days preparing for “Abby’s special Mass”.  When we explained about the casket and the procession, he insisted that he would help his uncles carry the casket in.  “I have to because I’m the big brother.  I have to carry my baby down the aisle.” 

Seriously, I thought to myself, what are these guys trying to do to me?  As it turns out, they both rose to the occasion like you could only imagine.  My husband, who is the life of the party but not what you would call a great public speaker, gave the most beautiful, touching eulogy for our angel.  My son, who sometimes hides behind me going up for Communion, proudly held the handle of his sister’s casket and walked her down the aisle.  He looked like such a handsome little man.  These two guys made me so proud today- thank you Abby, for bringing out the best in your dad and big brother.  Their love for you really shone through today.

I wish I had a picture of Connor “doing his job” as he put it, but I don’t.  Below is the Eulogy Matt gave today.

Prayer is powerful.  We often pray to God when we’re asking Him for something, begging Him in our most desperate hours.  Hopefully we remember to pray to God to thank Him when we are joyful too.  We have spent the past several months torn between desperate and thankful conversation with God. 

Our Abby was with us for just four and a half days, but we’ve been learning from her since she was conceived.  Many parents of children with special needs say that they learn far more from their children than they ever teach them.  We agree.  In fact, we never had the opportunity to teach our precious girl anything, but she has helped us grow and learn in ways we never expected.

Abby, you brought your mother and father closer together as a couple and taught us how to love so much better than we ever could before.  You’ve reminded us that our family is the most important thing in the whole wide world, and that you and Connor are the most precious and amazing gifts God could ever have entrusted to us.  As we grieve for you we also thank God for you, every minute, of everyday. 

No big brother could have been more proud or more excited than Connor.  He loved you from the minute he discovered we were pregnant with you, correcting anyone who asked him about becoming a big brother, “Oh no, I ALREADY AM a big brother!”  He reminds us everyday that he IS your big brother, even though you’ve gone to Heaven.  And he’s right.  You were ours long before you were born and you will always be our baby girl.

We’re so grateful for the short time we had with you.  Each minute we spent with you was a blessing, for which we are so thankful.  We cherished your every single breath and we can still feel your soft skin against us as we held you in your final hours.  Not one second of your life was wasted or taken for granted.  Thank you for letting us love you and for leaving your imprint on our hearts and souls.  We will spend the rest of our days loving you and honoring you.

Abby, with the exception of having to leave you at the cemetery, I pretty much held it together today.  I didn’t want to upset your brother.  But my heart is so broken.  I’d give anything to put you back inside me where I could take care of you. I hope you are making friends and having fun with all the angel babies that you’re meeting in Heaven.

Four and a Half Precious Days

It was the equivalent of a long weekend.  Have you taken an extended weekend vacation lately?  Maybe headed to Vermont to enjoy a few days of the Fall foliage. That is about the extent of my beautiful daughter’s life.  Abigail Grace was born before the sun came up Friday morning and passed away on Tuesday afternoon.  I feel like I blinked and it was over.  Did I even wakeup on Friday morning, was it just a dream?

We knew the cards were stacked against her from the beginning; when we received her diagnosis it was made very clear to us that her condition could mean a very short life, and certainly a challenging one.  Matt took two weeks off of work so we could alternate nights in the NICU after I was discharged.  I made arrangements to work from home with the expectation of multiple early intervention therapies happening each week in our home once Abby made it out of the hospital.  None of that ever happened.  On my day of discharge it all just ended.

It was early, and I went down to Abby’s room to be there for rounds.  When the team finally made it over to 2445 we joined them in the hallway to find that there were no major changes, but that the MRI revealed Abby actually had the Middle Interhemispheric Variant rather than Semi-Lobar as we thought.  Just after hearing that, Abby’s nurses told me it was “almost time”.  I immediately took off my sweater and Abby rested her face against my chest.  I laid there holding her, kissing her head and inhaling her as deeply as possible; feeling like each breath would be her last.  Matt sat right with us, rubbing her back and holding my hand, and then he took his turn holding her for the last time.

Connor left school early to say good bye.  He really just wanted to color, but he gave her a kiss first.  We didn’t push him, as he was nervous.  We decided to give Abby a bath and dressed her in the pink two piece outfit Con had specifically chosen for her to wear home.  It was as I was dressing her that I realized she was no longer with us.  I picked her up and held her to my chest and cried.  It was like I was holding a baby doll, and couldn’t let go.  I don’t remember all of the conversation around me, but I was holding her with tear-filled eyes not paying attention to anything.  Eventually I had to put her down, which felt like the most unnatural thing in the world to do.   

We could have kept Abby around for a few more days on a ventilator, but that wouldn’t have done her any good.  Our objective for her short life was for her to be comfortable and to know love.  We did our absolute best to make that happen for her.  She was meant to get her wings and join the other HPE angel babies. 

I can’t even begin to describe how heartbroken we are.  After we explained to Connor, who has a reasonable 4 year old understanding of death and Heaven, that Abby’s body just didn’t work like his does, he replied “But we have a crib for her.  She can just sleep there”.  Oh Lord, I want her to.  I wish I could have just taken her home and tucked her into her beautiful girly crib to watch her sleep eternally. Instead, this morning Matt and I picked out a tiny casket that she will be laid to rest in after her mass at St. Teresa’s on Saturday morning.  ***We did not print an obituary in the paper, however anyone who wishes to honor Abby with us is most welcome to attend.  The service is at St. Teresa's Church on Newport Avenue in Pawtucket at 10AM, this Saturday, November 20th.

Thank you, thank you a million times for all of the love and support you have offered us.  Our family and friends, our new friends from the HPE community; I can’t even begin to express our gratitude for the support we’ve received.

D-Day...Delivery Day, that is

 Abby's luxury suite in the NICU at Wome & Infants

 


Someone must have told Abby to show up a little early to make a good impression. My water broke at 1:52am, and it was the very dramatic type of gush you expect to see on TV.  I could feel it coming and rolled out of bed to what sounded like a waterfall.  I weighed myself when we got into triage- I’d lost over 4lbs of fluid.  Though I was in the midst of contractions and had soaking wet pants, even then I found myself in significantly more comfort than I was for the majority of my third trimester J  So far, YAY LABOR!

Connor's first visit with Abby 11/12/2010

                                                     

I won’t get into the details of it, but my c-section could have gone better. I’ve had one before; I know what it’s supposed to feel like, and I felt WAY more than I should have.  Luckily, my awesome OB (who couldn’t perform the surgery since we went in early) and my recovery nurse, Daria, (whom Matt and I know form High School, of course, because it’s RI afterall!) took great care of me afterwards and got my pain meds to where they should have been all along.  Thank you Dr. Brousseau and Daria!

We get two basic questions from people:

1. How is she doing?

2. What does she look like?

How is she doing?  That’s up for debate.  As have many other HPE parents been told, Abby’s condition is not compatible with life and we should expect not too much more than a week with her.  It could be prolonged with machines and invasive procedures, but nothing could be cured.  Her symptoms would merely be managed for a period of time until she passes.  I know kiddos beat these statistics all the time, but in the case she doesn’t, I don’t want to put her through anything unnecessary.

Our plan of care at this point is for comfort.  We want Abby enjoy what time she has with us by experiencing the warmth of our skin as she’s held. 

 

Abby's Baptism 11/13/2010

What does she look like?  Well, I’ll be descriptive here.  I didn’t get to see Abby for quite a while when she was born.  It was well over an hour before I saw her, and I was worried.  Matt came into recovery to “prepare me” for what her condition was.  Initially, Abby was a little shocking to see.  Abby’s head was indeed large.  Not just slightly oversized; she has macrocephaly.  Her poor brain had so much fluid in place of brain tissue that the skull plates had actually shifted down to the sides.  This also pushed her ears lower, down close to her jaw line.  It makes her look like she has big sweet soft cheeks to me J  She has a severe cleft lip and palate, which have an effect on her nose.  It almost looks like she has three nostrils.  And here’s the biggie, the part that breaks my heart when I look at her.  Abby’s eyes are widely placed, and her right eye is swollen shut.  It looks like there’s a big swollen bruise underneath it, and her left eye is just closed with no globe inside.  The rest of her body, I should point out, is as soft and tiny and perfect as any other newborn you will ever find.

What I just described may seem devastating to you; I’m aware that someone described her as being “severely deformed”, which I don’t agree with.  But do you know what we call her?  Our gorgeous girl!  That’s what she is, in fact it’s the only words that even come to mind when I go to describe her.  She smells beautiful, and her every inch of skin is so soft to touch.  I can cry thinking about it right now, how beautiful she is when I look at her and how soft her skin is when I rub my face against it to kiss her.  Matt and I couldn’t give her enough hugs and kisses if we tried.  I could sit with her snuggling against my chest indefinitely. 

My beautiful Abby

I’m being discharged Tuesday morning, but we’re not sure when or if Abby will be giving up her diggs in the NICU.  Her nurses are fantastic, and we have a wonderful Neonatal team right now.  We’re still waiting for some tests to be officially diagnose her as having semi-lobar HPE (I believe they are also putting the MIHV label on it too).  The genetics team just ran a Fish (did I spell that correctly) and will now do a microarray to determine the cause of the HPE and see what this means for me and Matt having children in the future.  We’ll find all that out later in the week.

Thank you to everyone who sent flowers, food, cards and warm wishes our way.  We’re all very happy right now.  I’ll keep you posted when we have more concrete news about Abby’s condition.  For now Connor is still really excited to be her big brother.  He would just like to have mommy back home for a few nights!

Love,

Matt & DG

Twas the night before Christmas...

Well, it definitely feels like the night before Christmas in the Allard household.  Connor is staying at his Grammy’s tonight, because tomorrow morning we’ll be checking into our luxury suite at Women & Infants for 6am.  I’m pretty sure it’s still dark then, isn’t it?  Poor Con- his very Preschool-appropriate anxiety was apparent as he told me that he’s “not coming to visit at the hospital because they can just put you back together and you can come home to put me to bed tomorrow night”.   We’ve had a few days in a row of tears about me having to sleep at the hospital.  He’s far less upset about me having an operation than he is over the fact that I won’t be putting him to bed for a few nights.   Thankfully, he’s still VERY excited that Abby is finally being born.

It’s rather odd, having everything all planned out, knowing that in 12 hours I’ll no longer be pregnant.  We’ve built up so much anticipation for this moment; it’s somewhat surreal that it’s finally arrived. With Connor’s birth I didn’t so much as blink and there we were, on the operating table.  This time I’ve had far too much time to develop anxiety about all this!  I am, however, looking forward to breathing easier and seeing my feet again J

I’m very aware that children with special needs can make adults feel awkward, especially when those special needs are physically obvious.  People don’t know what to say, they want to ask questions but don’t want to offend, or just feel uncomfortable and prefer to smile politely and move on.  We may be scared of what is different, of what we don’t know; people may stop and stare or they may immediately look away.  I’m writing this so you don’t have to be one of those people. There’s no reason to be scared. Abby is going to look different; she has a cleft lip, and for now her head is somewhat enlarged.  We aren’t sure of other abnormalities, but we’ve been told her eyes may be set closer than normal. These differences may be very obvious, or they may be subtle.  We’ll find out when we meet her tomorrow morning, but it doesn’t really matter; no matter what she’s going to be beautiful to us just like her brother was, and we love her.  If you’re reading this, chances are it’s because you care and we want you to feel comfortable and welcome around us. 

Matt and I really appreciate all of the support our family and friends have shown in the past several weeks, and particularly in the past day or two.  All of the phone calls, text messages, emails, Facebook messages, and comments here have been overwhelming and heartwarming.  I know we’ve both been trying to keep up with responses; we can’t express how much we appreciate it and how loved you’ve made us feel.  This could have been an isolating time, but our experience for the most part has been the polar opposite.  Thank you for reaching out to us. We can’t wait to meet our daughter and to introduce her to you!

"Well, she's a pretty big baby..."

I had an OB appointment today, and guess what?  Physically speaking, I am absolutely no closer to giving birth than I was a week ago!  When I commented that my stomach feels significantly larger than it was with Connor, my doctor’s reply was, “Well, she is a pretty big baby”.  I suppose this is when I’m supposed to be grateful that we’re having a c-section…

The waiting and anticipation is getting hard.  I was so busy with my own life before Connor was born, that I was shocked when he was almost 2 weeks early.  My mother and I had planned to go “hospital shopping” the next morning, and my bag wasn’t even packed when my water broke.  This time around it feels like I’ve been pregnant forever, just waiting to go into early labor.  I’ve had more than twice as many appointments, and my bag has sat packed for two weeks now.  I don’t know why people love to say things like “Wow, this pregnancy just flew by.”  People always say that, as if they are involved somehow!  My replies are generally to the effect of, “Really? As the one who is pregnant, I couldn’t disagree with you more.”

Sorry to sound so whiny, but this pregnancy has been so long and tiring.  Really tiring.  And I've looked pregnant almost from the get-go, so it wasn't a secret for very long.  More significantly, it’s been a different experience, not having the same expectations and things to look forward to at birth.  That’s not to say we don’t have things to look forward to- that’s not what I mean at all.  Just that we’ve gone through a lot of mixed feelings about what’s to come and there's a certain amount of anxiety that accompanies all this.  We’re really excited to meet our Abby and welcome her to our family and fall head over heels in love with her.  At the same time we’re not in denial of the reality that accompanies her condition.  Those possibilities can weigh heavily at times.  It’s a weird place to be, knowing the depressing statistics and at the same time having an immeasurable amount of HoPE for what she may be capable of.  Thankfully, we’re far more HoPEful than anything at this point J