Thursday, June 28, 2012

June 28th, 2012

I love feeling Abigirl have the hiccups... it just feels so "normal".

Tuesday, June 26, 2012

June 25th, 2012 part 2

I can't sleep.  A recent problem for me.  I'm so tired all the time, just worn out from being pregnant and keeping up with the family.  I spend a good part of my day just wishing I could lay down and take a nap.  Then night hits and I'm wide awake.  I think we eat dinner too early ... I think I need to start scheduling a snack before bedtime.

Tonight I've been laying in bed thinking about our delivery.  I think I need to talk to Trever tomorrow about reconsidering where we are delivering.  We toured Labor and Delivery as well as the Special Care Unit at St. Joe's today.  It was fine, but it wasn't home.  And although they care for so many babies with challenges, they've seen so few Trisomy 18 babies that I'm no longer convinced that location is that important.

Ever since I started learning about some of the differences in the hospitals I've been questioning our decision.   Tonight as I tried to fall asleep I realized that we might need to change our minds.  I'm starting to feel like we are causing ourselves (me) more anxiety than benefit.  We'll be further from home, thus further from our kids while we're in the hospital.  I know we can have them visit, but it will be more work.  And the NICU in Tacoma doesn't have individual rooms.  Although our kids will be able to go in and see Abby, it won't be as relaxed.  And we can only have grandparents drop in to see her.  They will try to accommodate us if she is still there after I am discharged, but that's not a sure thing.  And even while we may have a place to stay, it won't be by her side.

I just wonder if I would rather deliver down here.  I've had three babies at St. Pete's.  It feels a bit like home to me.  I'm familiar with it, it's close, and the NICU has individual rooms with a bed.  I could have friends drop in and keep me company.  And we could easily trade off going home to get good rest or see the kids (not that I think anyone will be able to get me to leave the hospital).

I think I need to make an appointment to go in and meet with whomever manages the NICU and learn more.  I'm not positive what they can provide us, or if they would feel the need to transfer us somewhere else.  The more I think about it, St. Joes makes sense if we are hoping for a lot of medical care, but it might not be necessary for what we are choosing.

It will make me sad to leave Dr. McMahon, but it made me sad to leave Dr. Bell.  I'm one of those people that doesn't decide easily between options, especially when both options are appealing.  Growing up my heart always hurt if I had to decide to spend time at home with one parent or go running an errand with the other parent.  I never wanted to leave one alone, I never wanted to choose.  I still struggle with that, I don't think most people would have any clue how this struggle plagues me, Trever is one of the only one's who sees my battle.  I worry so much about making sure other people's needs are taken care of that I often forget to take the time to figure out what my needs are.  I'm not saying I'm totally self sacrificing, and I'm not saying I don't have so many layers in this struggle.  It's a self inflicted problem, I think a few more years of therapy might help.  I can hear my old therapist saying "you are not responsible for how someone else feels".  All of that is to say that I know both of my doctors will completely support my decision.  I just need to take the time to figure out what that decision will be.

Monday, June 25, 2012

June 25th, 2012

We had a doctors appointment today.  Everything is going along great.  Abby is 3lbs 7ozs. She is small, but continuing to grow steadily.  At this point I think it's fair to hope that she'll be around 5 pounds at birth.  And all other areas of her health seem to remain steady (big heart problem but no other major problems).  We're so blessed.

I realize lately as people ask me how I'm doing that I'm doing great.  Sometimes I question myself as I give that answer, but it's really the truth.  It might be because I'm distracted and a bit detached, but I think it's still a healthy place to be for me right now.

I find so much joy in feeling Abby wiggle in my belly.  This is the first pregnancy that I've not been wierded out by a baby moving in my belly.  I've just always gone through a stage where it was a bit strange to comprehend that something was alive inside of me.  It felt so foreign.  Not to worry, I always made it past that stage and loved all those baby movements.  But this time I never had the transition.

And when I stop to think about it, I'm sad that I only have 4 weeks left of this pregnancy, of any pregnancy.  I love being pregnant.  I love growing a baby, knowing my body is doing something so amazing, and anticipating meeting the little person.   It feels so familiar to me at this point.  I can't believe we've done this 4 times.  Amazing.

I can't wait to meet Abigail.  I am just so eager to touch her.  And so sad that once she is here this stage is over, and I won't be coming back to it.  As much as I'm willing time to slow down, it won't.  Each day holds a new blessing, a new page in our life so I guess I shouldn't keep hoping to have life slow down.  Instead I can just try to be present in the current day and hopeful for what each new day will bring.

Sunday, June 24, 2012

June 24th, 2012

We've been working on the quilt.  (well, mostly me).  I love it.  I love having something productive to do as I finish out these last weeks of the pregnancy.  I am so thankful that Trever encouraged me to send out an invite for our friends to contribute to Abby's quilt.  Encouraged might be a bit understating what he did, he pretty much had to strong-arm me get me started.

It's been amazing to see the love that has poured in for her.  As I prepped each piece of fabric I felt blessed. I've never enjoyed ironing so much.  Even while cutting I was trying to remember who contributed each fabric.

My dear friend Marissa basically forced me to make the choice to hire someone to embroider each square.  I was planning to work on the embroidery myself with a friends machine but it ended up in the shop.  I'm thankful that we didn't give up on adding names.  I'm thankful for her push, she knew I needed it. I'll have the squares back in a couple days and then I'll be working hard to put the quilt together so we can send it off to be quilted.

This is going to be a very special quilt.  I'm so excited to get it done.

Sunday, June 17, 2012

June 17th, 2012 Fathers Day

Today started out with some stress.  I felt like I was having de ja vu.  4 years ago on a Sunday morning I realized that my baby girl was not moving much at all, I had the same fear the day before but was able to comfort myself.  On that Sunday morning I wasn't able to get much movement out of her, so instead of picking my son up from my parents and heading to church I drove to the hospital.  Trever had just left for work that morning, by noon my best friend was calling him to tell him that we were inducing.  Natalie was under lots of stress and we were only 3 days from our due date so the doctor decided it was worth choosing to deliver.  It all turned out great, there was reason for her stress and the moment of her birth was a bit of a panic but she was healthy and strong as soon as she got out.

So this morning I woke up realizing Abby wasn't moving much.  And then I realized she hadn't been keeping me company last night (she is such a wiggly little girl I always feel like I get to spend time enjoying her as I fall asleep).  I had eaten breakfast and had some OJ (I don't usually have much juice), so I knew I had given her enough calories to wake her up.  But I laid on my side for about 35-40 minutes and only felt two slight movements.  I was at my parents house, picking my kids up to go to church when Trever got home from work.  It was a Sunday.  The doctor on call was the same doctor from 4 years ago.  I tried to hide my stress from my parents so I wouldn't give them undo burden.  By the time I called the OB I wasn't hiding my stress very well.

Dr. Sorenson was wonderful (she always is).  She encouraged us to come in to be evaluated since she could tell I was feeling stressed, she mentioned I was setting myself up for a long day otherwise.  When I told her I was going to wait for Trever to get home she suggested I drink some caffeine (another thing I don't usually have in my diet) in hopes that it would give Abby a kick start.  20 minutes later Trever got there, and Abby had just started moving.  What a relief.

We were able to go to church and enjoy Fathers Day.  Although I had thought about the disappointment of spending Fathers Day in the hospital I had not thought about the future impact had we needed/decided to deliver Abby.  Trever talked about how he had prepared himself that every Fathers Day in the future might be a reminder of the day that our baby was born, and most likely died.

I am so thankful that my prayers were answered and Abby became active enough for me to relax a bit.  I'm so thankful that we haven't met her yet.  She is moving more today, still not as much as she was but maybe she has found a natural sleep rhythm, or maybe I'm just moving around a lot more today.

We'll be preparing to meet her in only 5 weeks.  It's just incredible how quickly this is going.  I need to get my act together in case we need to meet her early.

Saturday, June 16, 2012

June 16th, 2012

You know that moment when someone is talking to you about how busy you will be with 4 kids?

Somehow I have a very easy way of making that moment awkward.  I don't mean to, but it just happens.

If I don't think I'll see the person in my daily life in the future then I can let the question slide by.  But when I know I'll see them around I feel like it's best just to let the news out.  I can't say it's easy on me, or even natural to me, and I know that I can't remember how it sounds to hear it for the first time.

"Actually she is our Angel Baby, she won't be with us for very long."  Cue silence, accompanied by a downward glance.

I just feel torn. I feel so badly for the person I'm talking to, for what I assume is a terribly uncomfortable moment.  At the same time, it feels better to me to embrace who Abigail is and what we anticipate from her life.  And I can't imagine it would be any less awkward/uncomfortable to have someone ask about our baby in September and possibly have to tell them that she died already.

I haven't come up with the "right" way.  I don' think there is a right way.  So I take that little moment, and I choose what I want.  And then I definitely acknowledge to the other person that I know it's strange to hear, and I apologize for the discomfort.  I try to realize what it sounds like for the first time, to realize that we are adjusted to this already.

Every time I say it out loud, that our baby isn't expected to stay with us for long, my gut tightens.  It's probably letting me know that I'm not really "adjusted to the news".  Especially when I hear someone else say the words out loud.  When I listened to Trever tell someone, I felt like I wanted to just sit down and close my eyes.  To wish once more that this wasn't our reality.

Friday, June 15, 2012

June 15th, 2012

I had my last appointment with my Olympia OB today.  I've been so thankful to have him along on this journey.  God led me to the right medical partners.  It helps so much to be able to talk to someone about both the medical as well as the spiritual side of Abby's life.  Dr. Bell took a moment to pray with/for me at the end of my appointment, his words of prayer were so comforting.

We talked about my personal conflict regarding heart surgery.  Trever and I have not pursued any major medical  procedures/surgeries for Abby.

I've been in situations where I've had to defend that decision.  And I've been in plenty of situations where I feel like I should defend myself, but I haven't had to due to the forum.  Each of those situations can weigh heavy on my heart.  But the hardest moments are when I doubt myself, doubt my love for my child.

What does it mean to love your child?  What would you do to save your child?  What does it mean to protect your child?  And how do I define quality of life for my baby?  Until Abby came into my life I think the answers to those questions were so clear.  She has challenged me to really evaluate what defines a life.

Every once in a while I have to revisit the decisions we've made.  I have to comfort and reassure myself that it's okay for us to make these decisions.  We're giving Abby a chance at a beautiful life, one filled with as much love as possible.  One filled with comfort, touch, prayers, joy and more love... and maybe some extra love on the side.  We're giving her a life without lots of trips to the hospital.  It's going to be so hard, probably so much harder than I can imagine, those moments when she is in distress and we choose to just hold her and love her.  When our parenting instincts tell us to call 911, to rush her to the ER.  I already feel my heart aching in anticipation.

When my almost 80 year old grandma was given a diagnosis of emphysema, congestive heart failure, and lung cancer that had metastasized to her liver I thought it was crazy that they offered her chemo.  She had lived nearly 80 years, she was already not recovering from a bought with pneumonia, how was chemo going to help her?  Yes, it may have given her a few more years.  But at what cost?  She would have lost so much time/health in the process.  It's like we are so scared of death that we feel the need to fight it at all ages.  Death isn't horrible for the person who goes to heaven, death is painful for those left behind.  And death is inevitable, even more so when you are almost 80.  I was glad she made the choice to embrace the days she had left and then let her body finish the job.  I was also so grateful that my grandma was surrounded by friends and family literally every day from the moment of the diagnosis.

That's what I want for our little Abby. To have her surrounded by the love of this world before she is surrounded by the love of Heaven.  To celebrate her each day that she is in my belly and in my arms, and then celebrate with her when she is born into her new life.

I'm not saying it's going to be joyful and easy (I'm truly not that delusional).  And I'm not saying that if one of my other loved ones gets terrible news that I'm going to encourage them to just ride it out and enjoy their numbered days.  No way, I'm going to say "fight your ass off, do what you can, embrace this life and live it to the fullest!"  I just think these other two situations fell into my heart in a different way.

The last conflict that I feel surrounding our decisions with Abby is the message that it sends for the Trisomy community.   These babies are already discarded by most of the medical community and by extension the families who are faced with the decision of what to do with a Trisomy diagnosis.  I know we already fall into a very small group that has chosen to give our baby life regardless of the diagnosis, but I don't want our decision to avoid major medical interventions to keep other families from having a chance.  The discussion regarding what medical choices you should have, and who should pay for it are not reasonable topics for my story.

I just hope we can find a way to advocate for better medical transparency regarding Trisomy babies.  That families can be given a more thorough picture of what this might mean for them, and counseling to help them make the decision that is best for them and for their baby.  That "incompatible with life" does not mean you *have to* terminate your pregnancy.  Have I ever mentioned that you can end your pregnancy at 20 weeks (in this situation) more quickly than you can get a gun?

Tuesday, June 12, 2012


I'm so thankful I started this blog.  Once or twice I've gone back to read some of my posts.  I think it will end up being a very valuable keepsake for Abby's life.

Our doctor told us she has shared this with some of her other patients and it's given them some type of support.  Maybe they're just thankful that they aren't as crazy as me!! haha. Maybe it helps to watch someone else go through this and share thoughts without having to actually be in contact.  I know as I read the book Bloom, by Kelle Hampton I felt comforted. So many of her words were mine as well.  Our experiences are so different, but I could see myself in those chapters.  I felt like it was a book that I could have written, if I had an incredible talent for writing and photography like she does.  I guess it was more that I felt like she was reading my mind.

So, again, I'm thankful I've kept this blog.  I'm looking forward to making it into a book that we will have forever.

The only downside I've found from making it public is that sometimes I restrict myself.  I'm not able (willing) to share some specific pains or frustrations.  I can't be completely transparent with my experiences because I could easily offend people in our life.  I'm sure I'm not supposed to worry about that... but my parents taught me if I didn't have something nice to say I shouldn't say anything at all.  (In honesty, I break that rule sometimes.) In the end, a bit of information left out to save feelings is probably worth it.

If my kids read this in the future there will be pieces missing.  Disappointments that they may experience (associated with their own life) and not realize that I experienced also.  Maybe I will have to add a private letter to them in the book, to let them know if they are experiencing similar situations, they are not a lone.  Maybe it won't really matter.

My posts today seem so sad.  Makes me think of something I read recently....

"So this is my life.  And I want you to know that I am both happy and sad and I'm still trying to figure out how that could be."  The Perks of Being a Wallflower.

So true.

June 12th, 2012

My chest feels tight.  Although checking items off of my to-do list is always helpful, it can be painful in the process.  I just booked a room near the hospital for family.  We figure the kids will stay there with my parents for at least a couple nights so they can come back and forth from the hospital without having to drive to/from Olympia.  And then the kids will have a fun little getaway with a pool.  I'm hoping to give them some positive memories during this uncertain time.

I'm sure that doesn't seem like a big task.  But I needed to talk to the hotel manager to make sure the reservation was flexible, so we could cancel without fees, or extend without problems.  It just makes my chest tighten to speak the words "my daughter only has a 50% chance of being born alive" out loud.  The reality sneaks up on me.

And not knowing how long we'll be in the hospital is strange.  But really, that isn't special to our circumstances. Lots of people end up with unexpectedly longer stays in the hospital when they have a baby.  Maybe it would have been better for me to not know it was a possibility (a hopeful possibility??)

I go for a bit being able to just feel normal and even relaxed.  Then a task comes to my mind and suddenly it obsesses me.  I need to know how much time each set of grandparents are willing/wanting to spend with the kids.  I need to have a schedule to pass the kids around so I know it's taken care of, so I know where they are.  So I know the kids as well as the grandparents are being taken care of, getting an equal chance to spend time with little Abby.

I can't believe we only have 6 weeks until we enter the next chapter of this story.  I've never wanted time to go more slowly.  I've never felt so anxious about an impending birth.

I'm not always anxious.  So often I'm actually feeling excited.  I feel her wiggle and kick and I know that in only 6 weeks I will hold her little body in my arms.  I will be able to kiss her and touch her.  I can't wait for that moment, whether or not she is alive.  To see her feet, to hold her little clenched hands, to see her lips.  To touch her soft skin.  This little girl that holds such a special place in my heart.

I'm so hopeful for her siblings to meet her.  Not that Andrew will care too much... but Nathan and Natalie will love on her.  I can already see Nathan wanting to hold her.  Natalie carefully staring at her with amazement, I'm not sure if she will be eager to hold her or not.  But I'm sure she will snuggle up to her little sister with such pride.  She is SO ready for this little girl to make an appearance.

I'm so sorry for Natalie that she won't have the sister she yearns for.  Quite honestly I think she envisions a baby coming out, and then having a 3 year old to play with in just a few weeks.  But she knows that Abby will be going to Heaven before the rest of us.  I'm sure she'll treasure her days with her little sister, and I'm sure she'll ask us when she is leaving.

Friday, June 8, 2012

June 8th, 2012

If you've seen me lately and asked how I was doing I surely answered that I was great.  And I was.  Actually I still am, I just hit a speed bump today (or is it a pot hole?).

I follow the Trisomy Advocacy group on Facebook.  I think I might need to stop.  It's wonderful to hear stories of children with T18 who are "thriving", who are living longer than expected.  But it's so super overwhelming and confusing also.

One of my closest friends happened to call me this morning after I had been reading some articles and watching a very touching video (not about a T18 baby).  I was deep into contemplating how and why I (we) make our decisions and didn't realize the emotional toll it was taking on me.  I couldn't even lie and say I was doing okay (yes, sometimes I probably do that).  I'm sure it wasn't even easy to understand my thoughts through my tears.

It's just so confusing.  I really believe that there isn't a "right" answer/choice, made more evident by the fact that there are no known outcomes.  But sometimes it is so easy to start to question my value as a mom.

I know there is only about a 5% chance that Abby will make it to her first birthday, and I haven't read a single account of a baby making it that far without corrective heart surgery (unless they didn't have a heart problem). What if it was more common to give medical aid to these kids?  What would the statistics show?

It only takes a 50% chance of death from a congenital problem for the medical society to classify the syndrome as "fatal".  In 1972 babies with Down Syndrome were born (I have no idea how many lived at that time, but I do believe their life expectancy has almost doubled since then), after Rowe v. Wade 90% of diagnosed cases of Down Syndrome are terminated.  Are we a society that is so afraid of adversity???  I know there are varying degrees of all syndromes, but children with Down Syndrome are often happy and capable.  They currently have a life expectancy of around 50 years old.  I'm not meaning to simplify their life, but it blows my mind that they are so easily discarded.

Okay, that was really off the point.

So I get myself stuck... wondering why I'm not fighting harder for Abby.  Yes, I'm growing her and letting her body decide when it's time is over.  But why am I not even inclined to fight, to find someone who would perform surgery?  If one of my other children was given a 5% chance at life you can bet your ass I would be doing everything possible to keep them with me.  Why am I so comfortable (that is way too light of a word but I can't find a better descriptor) not fighting harder for Abby?  (And clearly I am not "so comfortable" as I'm still feeling confused about this.) I know the love I have for my children, why am I willing to accept this behavior towards her?  The only answer I've been able to come up with is that this is the only life I've expected with her, and that even children who have T18 without heart problems don't live long.

I wonder what my other children will think someday?  Will they wonder about the decisions I (we) made?  Will Trisomy children be given more or less of a chance?  Parents are fighting so hard to change the treatment of these kids, at the same time more families are choosing to terminate the pregnancies.  I wonder how many of the parents who fight for their child would have ended their life, because more often than not it's families that were unprepared for a baby with T18 that are telling the success stories.  Which leads me to believe that they probably had softer markers, and maybe more of a chance in the first place.

I wonder how I will feel once I have held her precious little body in my arms?  Whether she is born into my arms or heaven, how will I feel when that moment arrives?  Will I be drawn to make different decisions, will I question myself more or feel more at peace?

And I hope that our actions towards Abby do show love.  Because we do love her, and she has already brought us so much joy.  Our hearts are bigger from the love we have for Abigail, grown from a deeper compassion than we have known before.

When my kids read this years from now I hope they know deep in their heart how much we love their little sister.  How open our hearts are to cherishing her during this life, and how much we look forward to a time when we are all reunited in heaven (not too soon).  And I hope they know I will fight my ass off for them every step of the way, even if it doesn't look/feel/seem like I am doing that right now for Abby.

Thursday, June 7, 2012

Planning for the quilt

I'm not positive if I've posted about Abby's quilt yet. (And yes, I'm always too lazy to go back and browse to answer my own question.  Maybe I should have used the "labels" option early on.)

We're making her a love quilt (accurately named a signature quilt or friendship quilt but I like my name more).  We invited friends to send in pieces of fabric to be included in the quilt.  I am overwhelmed and filled with love by the response we've gotten.  I know I'm going to cry when it's done, what a wonderful show of affection for our sweet girl.

Now I just have to figure out how to incorporate this much fabric into one quilt.  We had originally planned to put a border on the back with the name of each person/family by the fabric that they gave.  The front would simply be a mix of lovely fabrics.  Now Trever thinks that he might want the names on the front, hugged by the givers fabric.  Yes, I let him make these decisions.  Either way will be wonderful, if I end up really liking one pattern over another then I'll choose.  Otherwise it's just too hard for me to decide.

And I'm SO thankful for a friend who has offered to embroider each name.  She clearly has NO idea what she is getting herself into.  We need to coordinate so I can make this as "easy" as possible for her.  I may need to have two people working on it... I had no idea to anticipate so many people would reach out for this project.

I can't wait to take a picture of Abby curled up on this beautiful blanket.  It'll be out in our home constantly while she is around.  And it will be a beautiful reminder of the love that surrounded her when she is gone.

Tuesday, June 5, 2012

12 weeks ago...

I was just sitting here reading through old posts.  I'm so glad I've been writing, it's hard to remember the roller coaster we've been on.  And that is really so wonderful.  It means we've been on a roller coaster, it means there have been highs, lows and lots of in between.

And it means that we have adjusted.  I guess I can only speak for myself, but I'm confident Trever has adjusted more than I have in most areas, and more quickly too.

I'm so thankful that growing Abigirl (I don't call her that enough) brings me joy.  I'm so thankful that this journey has not been only about the sadness.

I cannot believe it's been 12 weeks since I talked to my doctor and was given the list of concerns.  12 weeks since I sat shocked and crying.  After having spent a day telling myself that I was being crazy thinking things might be "that bad"... I found out I was right.

I have this crazy habit of indulging horrible "day dreams"... where my mind wanders through the scenes of a tragedy.  In the end I always calm myself, saying "well that's not going to happen, nothing ever happens exactly the way you anticipate it".  I wonder if it ever occurred to me early on in this journey that it really was turning out to be what I had feared?  That said, it still didn't happen the way I imagined.  In some ways it was worse, in many ways better.

I can picture myself answering that call from the doctor, the one I had waited all day to receive.  I walked away from my friends, sat down on the other side of the pool deck, and with shaky breath and racing pulse asked for the details.  I can remember the compassion in Dr. Sears voice.  I remember her telling me that she couldn't understand my question and she would give me a moment.  I remember asking questions and knowing I wasn't completely absorbing the information.  I remember hanging up and only taking a few steps before I was wrapped in my friends embrace.  I remember trying to tell my friends what I had heard because I knew I couldn't compose myself enough to call Trever yet.  I remember being able to crack some jokes (although I have no idea what they were).  And finally I remember making the call to let Trever know that yes, our fears were going to be realized... there wasn't going to be an easy way out of this situation.

I remember so many details from the rest of the night, sitting on the couch, sending a text to some of my close friends but not being able to pick up the phone and put any words to any of this.  Walking late at night, being surrounded by the warmth and my friends.  Laying in bed, the night taking so long.  Every time I rolled over my brain was awake, a broken record repeating the truth to me.  This wasn't a dream.

For all the details I remember, I can't feel the pain.  I guess that's not totally true, as I wrote those words my chest tightened and my eyes stung... but I can only feel the fringes.  I've heard that our bodies are not capable of feeling/remembering the actual pain, only the memory of it... and of course the pain that comes with remembering.  But there is a buffer in place.  I don't know if this holds true with deeper wounds, but it is holding true for me right now.

So 12 weeks ago we got confirmation that our baby was not healthy.
11 weeks ago we got the call saying that the baby did not have Trisomy 21 (Down Syndrome) as the doctor had believed she would (probably a hope that she had for us really).  Instead the baby had Trisomy 18 (Edwards syndrome).

And 11 weeks ago we found out we were having a girl.  We named her Abigail.  And we knew that we would give her whatever life she was destined to have.  I'm so thankful for everything we've gone through in 12 weeks.  I'm so thankful to know that our journey is not over.

I'm so excited that in only 7 more weeks we will hold this little girl. She will be in our arms, covered in kisses and tears.

Monday, June 4, 2012

June 4th, 2012

We got to spend time with our darling girl today.  My parents and the kids all went to Tacoma for the ultrasound.  She's doing so good.  Getting bigger... her weight is estimated at 2 lbs, 10 ozs.  She is maintaining a steady growth which is great. Basically she is about 2 weeks behind in growth, which is on par with what we've been seeing.

Recently someone who has a child with T18 commented on this blog and left her blog information.  Their story is different than ours, but it was great to read about their experience early on.  I was prompted to ask my doctor a bit more about the hospital stay.

It sounds like we will probably be staying a bit longer than I would have assumed.  I want to come home right away, I have not been mentally prepared to spend time at the hospital.  If she is doing well then we will stay longer (it sounds/feels a bit backwards), probably between 5-7 days.  Unfortunately St. Joe's is not set up as well as St. Pete's, so Abby may remain a patient after I am discharged and there is a good chance we won't have a place to stay with her.  I'm hoping (assuming) that there will at least be a chair for us to take 24 hour shifts with her in the NICU.  But I don't know what that will mean for visitors (our kids, family, friends).  I guess they do have a room that might be available to me if she is going to be discharged within a couple days.  I'm thinking we need to butter up the NICU staff to try to get that room.  I really can't imagine being separated from our little girl who could quickly change course and go downhill.  And I would really appreciate visitors to help me stay connected to the rest of life.

On the other hand, if she is not showing signs of remaining strong (hope for a longer life... ie, weeks/months) then we will head home right away with instructions for comfort measures and support from hospice.

I'm still digesting all of this.  We go back for another ultrasound on the 25th, and we're planning to visit the labor ward and the NICU at that point.  Dr. McMahon is hoping to schedule some time for us to meet with the head nurse, hopefully that helps to comfort me.  I'm not a mess about this, it's just another strange change after delivering all three of my babies at the same hospital.

At St Pete's I would be able to stay with Abby at all times, and have visitors.  Although we are still committed to delivering at St. Joe's I am wishing we could just have the best of both worlds.  I'm thinking that at some point I am going to learn to just let go.  Maybe?  Probably not.  There is always hope.

Speaking back to the other little girl, she had VSD (a whole in the ventricular part of her heart), it healed before birth.  Little Abby has more than a hole.  Picture a wall between two rooms, it's common (with a T18 baby) to have a whole in the top of the wall, or in the bottom of the wall.  Abby is missing the whole wall.  I believe in God, I want to say that I believe in miracles (Abby is a miracle, all babies are)... but I don't believe she will come out with a heart that works well.  There have been no signs of change, and we don't really know how bad it actually is since we never met with a fetal cardiologist.

When I mentioned the story to our doctor, not asking for hope but just relaying a common occurrence for us of hearing about "this other kid with T18..." she was inline with our thinking.  This isn't going to go away.  Abby is beautiful, and perfect in her own way, she is a miracle and she'll just have to let us know how long she'll be here.

The upside of her heart condition, if it is what ends her life, is that the process is peaceful.  Somewhat like carbon monoxide poisoning.  She will just fall asleep and peacefully leave us.  Her death will bring so much pain, but I can't imagine a better way for her to leave us.

So as not to end thinking about her death... I can't believe it's only 7 weeks until we meet her!  I just had to count the weeks out on my calendar... I'm in complete shock.  I was definitely stuck on the 8 week mark.  I've never been afraid of birthdays, pretending I'm younger than I am... but right now that is how I feel.  A bit in denial, with a mix of excitement over the prospect of seeing her and holding her.

Sunday, June 3, 2012

Mother Teresa

I have found the paradox, that if you love until it hurts, there can be no more hurt, only more love. - Mother Teresa

June 3rd, 2012

I'm not even sure I'll be able to put adequate words to how I'm feeling today.


It's such a simple word, it's seems so fitting, but not quite big enough.  My little Abby is tiny, but she is big and powerful too... so maybe honored will work.

This morning I met up with 8 wonderful friends (my closest friends from high school and one cherished new friend, who was also our photographer for the day).  We enjoyed some time together at Anthony's.  I'm sure we could have sat and talked for hours longer, luckily someone was aware of the time and got us moving.

We took pictures together, as well as some pregnancy shots down by the water.  (I'll add pictures to this post when I get them).  The love was palpable.  These women have known me for at least 20 years.  They love Abby fiercely.  Two of them flew up from California, something I did not expect.  A gesture that felt so loving, and as much as I didn't expect it, I was also not shocked... because these are wonderful women, cherished friends.  A huge thanks to Jessie's husband who encouraged her to come even though this weekend was their anniversary.

After spending a couple hours together we headed over to Jen's house for Abby's party.  I was overwhelmed by how wonderful it felt to be surrounded by so much love from so many amazing women.  Jen's home filled with the beautiful sounds of conversations.  The kitchen was filled with my friends, until people finally worked their way outside to the most relaxing porch overlooking the water.

Again, I felt so honored.  All of these women took time away from their busy lives to come share in this time together.   Along with my friends who flew up from California, we had a friend who drove over for the weekend from Wenatchee, a dear friend who came from Sequim, a friend whose husband and daughter have birthday's surrounding this weekend and she made the trip, a friend who is in the midst of what must be a huge project of opening a new bakery, and friends who drove from other areas of Washington.  I'm sure there are other stories of plans put on hold.  Almost everyone there has children and families, what weekend isn't busy?  I felt so honored that so many people made it a priority to come celebrate my darling little girl.

Abby is such a lucky little girl, and I am such a blessed Mama.  We weren't there to celebrate my pregnancy, we were there to celebrate Abby.  Had the party been a bit later at night I think there would have been some great dancing happening.  The music of all of those voices and the images of all of those beautiful faces are still swimming in my mind.

Have I said how honored I felt??? I'm so thankful that I was able to bring Abby to this party, I know she could hear the love that was surrounding her.  And I'm hopeful that she will be able to meet many of these wonderful women.

How did I get so blessed to have my life filled with so many strong, compassionate, funny, loving, fierce women?  What a great life this is!!!

Saturday, June 2, 2012

June 2nd, 2012

Wow, June already???? I'm not really one for drugs... but I'm wondering if there is a pill that helps time slow down a bit?  This pregnancy is going so quickly.  And it's my last, so I want to savor it a bit more. I don't want to rush through her kicks and wiggles.

We went out with friends tonight.  Our good friend coaches a summer baseball team here in Olympia, The Capital City Senators.  I'm not even positive how to put the words to my thoughts about Brian.  It's impressive, amazing, generous, important, and impactful (not a word but I'm going with it).  The kids in our community are so blessed to have him here.  In his early 30's he moved to Olympia because he was in love with my friend, and he started this team 4 years ago.  And I wish you had a chance to see him interact with the boys.  He has super high expectations of them, of their behavior, their effort and their attitudes.  And I'm sure they all strive to meet those expectations because he also has such a kind, fun, supportive attitude towards them.  If you meet him it's easy to assume he's just a fun guy... and although that is true, it's really just a piece of him.

So anyway, we were at the auction last night.  And of course we had a great time.  It's inevitable with we're surrounded by friends.

My friends were heading out to do some dancing afterward.  They were sure that Abigail wanted to go dancing too.  They've seen her in action, they know.  Poor thing, her mom and dad weren't really up for it.  Maybe next time.

The night was so wonderful, I love having those normal nights.