How do you prepare to bring a child into this world – a child you have been dreaming about your entire life – when you don’t know how long he may get to stay?  How do you prepare your heart, knowing his heart didn’t form correctly, knowing he will have to endure more tubes, more surgeries, more medicine in his first weeks of life, than you have ever experienced in your 31 years?

How do you live inside all of the excitement – what will he look like? whose temperament will he most closely emulate? – while simultaneously living inside all of the worry – how will his health be upon birth? did his arteries form close to how they were supposed to? will he be a fighter?

How do you wrap your mind around the fact that in ten days (or sooner), the process of birthing this little being will begin?  As a first time mom, a lot of firsts will start happening.  As a heart mom – a heart mom – an identity I never even considered – so many more firsts and challenges are coming my way.

I love this little boy so much, and I am scared for him – for us – for me.  In my brightest moments, I feel calm and prepared.  I feel like we’ve got this, and we will make it through whatever life throws at us.  But mornings like today – when I wake up just after 4 a.m. and am just awake for the day – I sit here and wonder if I’m strong enough for all of this.  I wonder if we can survive every possible scenario.  I anticipate just how much this little man is going to change our lives, no matter what.

This song – The Fighter by Gym Class Heroes – has just been speaking to me lately.  This baby better have the fight in him – his dad and I will fight for him – his Papa Joe and Nana J will fight for him – so many of you are fighting for him.

“Every time you fall it’s only making your chin strong
And I’ll be in your corner like Mick, baby, ’til the end
Or when you hear a song from that big lady

Until the referee rings the bell
Until both your eyes start to swell
Until the crowd goes home
What we gonna do ya’ll?
Give em hell, turn their heads
Gonna live life ’til we’re dead.
Give me scars, give me pain
Then they’ll say to me, say to me, say to me
There goes the fighter, there goes the fighter
Here comes the fighter
That’s what they’ll say to me, say to me, say to me,
This one’s a fighter”

Give em hell, Jalebi.  That’s my battle cry for you.  I will always give em hell for you – please be a fighter.

My initial thought was to title this “The End Draws Near” – but the arrival of Jalebi isn’t really an ending.  An ending to pregnancy aches and pains and (hopefully) diabetes and diet restrictions, sure, but really, it’s more of a beginning.  One moment we will just be Arif and Holly, and the next moment we get the biggest promotion of our lives: Dad and Mom.  Perhaps we are already there, but it will be more real in the moment we hear his cry.

I am simultaneously ready and not-ready for his arrival.  While we were in Iowa City for our last round of appointments on Tuesday (Yay! This means everything is looking good), they set an induction date for Tuesday, October 20th, at 8 pm.  This means the beginning of the beginning happens in just 32 days.

The normal first-time mom stuff (I assume, though this whole experience has been so far from “normal”): I feel I still have a ton to get done before he arrives.  We have the necessities – a crib, a carseat, diapers and wipes – but I have so many more things I want done.  Bookshelves in the nursery, cushions for the hand-me-down rocking chair that’s been in my family for generations, a side table, a lamp, maybe a rug…With the move happening when it did, our nursery is far from finished, though we have already painted, put in a new ceiling fan, put in new window coverings, and I have washed all of his bedding, towels, and 0-3 mo clothes….I still want to scrub the used toys and figure out a diaper changing station organization system for the family room….Not to mention, though I have his bag packed for the hospital and have started gathering things for ours, I still have a lot of packing to do. (Which is the not-so-normal new mom stuff – We are looking at a much longer hospital stay, and I want to be as organized as possible going into it)

Of course, in the midst of all of that, I am exhausted this week.  My energy is low, and it’s all I can do to take my walks as usual and eat every three hours as prescribed and just get the daily household tasks done.

I still struggle with wanting him to stay inside my belly where I know he is safe.  Where I can feel his kicks and punches to the ribs multiple times a day.  I feel him trying to roll around and get comfortable in there.  I know he is getting the oxygen he needs from me, and he is safe.  The other part of me, that has accepted the fact he will be coming out soon, is just ready to check into the hospital already.  I want him to be monitored; I want to know he is okay and know that I have a team doing everything possible to ensure his survival.  The limbo is hard, and a part of me wants to be able to stop worrying about everything we will be facing soon and Just. Start. Facing. It.  I’m ready to be thrown in the middle of it all, because in some ways, that will feel easier to me than the waiting, wondering, worrying.

Ultimately, it’s a beginning I have been waiting for since I can remember.  And it’s coming.

I learned, early on, babies with heart defects often have trouble eating.  Many of them go home with feeding tubes in order to get in their daily calories.  They need to eat well and grow well, so they are big enough to handle the surgeries and procedures.  In our case, Jalebi will need his “permanent fix” surgery around the 6-9 month range.  He needs to get in his calories, and he needs to gain the appropriate weight.  I knew that.  I’ve been worried about the feeding tube.  We have no way of knowing if he will need it or not, but I know it is a very distinct possibility.

I also knew we would likely have to supplement breast milk with formula, for the added iron. (at least, I think that’s why – I can’t hold everything in my brain)  Again, we need to bulk him up!  I understood all of this.  I was okay with all of this.

What my brain failed to do was connect the dots of what this would all likely mean about breastfeeding.  Because we have to closely monitor how much he is eating, I will more than likely not be able to breastfeed my son.  I will pump (and pump and pump and pump) and will give him breast milk in a bottle, so we can measure how much he is taking in.  But we would have no way of knowing the amount he eats if we let him eat directly from the source.

Again, we don’t know this with 100% certainty.  Maybe Jalebi will like eating as much as his father and I do.  If he’s a total Rock Star and eats with a great appetite, we may be allowed to feed him the way I always thought I would.

But it’s unlikely.

Of course, his health is far more important than any idyllic dream of mine.  Of course, I will pump and do the best I can to give him the nutrition he needs…but man, I am grieving this one.  There are so many pieces that are so different from what I had always imagined – and this just adds to the pile.

I am remembering a lesson I learned a few years ago: I am allowing myself to feel what I am feeling in the moment.  I am not talking myself out of being sad about this.  I am just letting myself be sad.  I know it, too, will become a new normal for us – It is amazing how quickly we adapt to all of these new obstacles and realities.  I know my brain will firmly move me away from sadness with time, and I will focus on what I need to do for him.  That will be all that matters.

But for now, I’m incredibly disheartened about this.

 

We were in Iowa City last week Monday for our whirlwind day of appointments.  We started with a fetal echo and a meeting with the cardiologist.  We got good news (It was about time for some good news.) – He was able to see more clearly this time that the arteries that carry blood from the heart to the lungs do appear to be there.  Last time, he was concerned they hadn’t developed and were instead several tiny vessels, which would have required more extensive, complicated surgery.

Needless to say, our day started on a very good note.

We moved on to the growth ultrasound.  My amniotic fluid looked good, and baby was about 3 lbs, 4 oz.  He was measuring in on time and at the 42nd percentile – so just under average weight.  This is all good news.  He is growing as he should be!  This, too, was a huge relief to hear.

My parents then arrived to the hospital for our meeting with the surgeon.  I cannot even express how impressed I was with this man.  He explained things very carefully to us – really took his time – and put us at ease.  I have the utmost confidence in his abilities.  All four of us were very impressed – this may have been the best meeting of the day.

From there, we went into a room and had a meeting with the cardiologist and his nurse, the high risk ob/gyn, the neonatologist, the genetic counselor, the social worker, and a couple of other nurses.  We were able to hear more about what to expect as my pregnancy progresses, what to expect immediately after Jalebi is born, how we should proceed with genetic testing, and I was able to ask all of my many questions.  It played a huge part in helping us feel more confident about what is to come.

Several people at the Help-a-Heart support group we attend told us this meeting would make a huge difference in how we were feeling about everything.  I didn’t really believe them – but they were so, so right!

We had one more big appointment – first with the high risk ob nurse to get an extensive health history and then with the ob himself.  He was another wonderful man who really put us at ease.  Everyone was so helpful and kind, and I am so glad we are receiving our care at the University of Iowa hospital.

The only downside was the social worker who gave us the tour – well – she kept saying (literally about 8 times) that I would cry about various things.  It was just a bit odd.  And she didn’t seem to have the answers to our questions.  Easily handled – we were able to put in a request to avoid working with her if it can be helped.  Even with something as simple as that, they bend over backwards to ensure our comfort.

I came back from that day exhausted (We were at the hospital from about 7:30 until 4:30) but also hopeful and more confident.  It was exactly the day I needed at that point, because I had been feeling a lot of despair and darkness in the week prior.

There are so many unknowns once this baby boy arrives, but I feel a lot more prepared to tackle them.  I have some amazing support, amazing doctors on my team, and an amazing partner through the whole process.  I forget sometimes how lucky I really am in the middle of all of this.  It was good to be reminded last week, and it is good that I haven’t lost that perspective.

We’ve got this.

On Friday morning last week, I was diagnosed with gestational diabetes.  At first, I was very surprised, and I didn’t really understand how it could be happening.  I eat fairly well most of the time (Yes, I indulge in dessert maybe a little more than normal since being pregnant, but I also eat lots of veggies and real foods and avoid processed for the most part.)  I was walking when I could (It was sporadic with the move and everything else going on, but it was happening – and with a dog, it was at least happening every evening.)  I was surprised.  I didn’t understand that gestational diabetes has less to do with what you’re doing and more to do with how your body is handling the pregnancy and the hormones at this stage in the game.

It sucks, to have another concern thrown at me.  I definitely had some self-pity days (Serves me right, after writing that last post!)  Here I am, in one of the most stressful situations of my life, and I have had every vice taken away from me.  I already wasn’t able to indulge in a medium rare steak or some really good sushi – or have a margarita (or two) – and now, I can’t have dessert either!?!  At first, it was really hard to fathom.  I was feeling pretty sorry for myself.

But – really – it hasn’t been so bad.  If it was just my health we were talking about, I am sure I wouldn’t be so strictly following the guidelines, measuring out serving sizes, refusing to choose any carb that is overly processed or sugary.  But we are not talking about just my health.  We are talking about our baby boy, who already has enough health issues on his plate.  I want to give him the best possible chance I can give him, and this issue…Well, this I can control.  I can’t control his heart stuff, but I can control this.  And I am finding my personality (I love control) is thriving with this.  It gives me something to focus my attention on; it is something I can DO for our little Jalebi.  It is actually bringing me some peace.  It really is.

And in the grand scheme of things (I will probably often relate this back to when I lost my brother, because these are the most emotional, stressful times I have had in my life.), this is a minor concern compared to the news we already got.  I am sure I would be a lot more worried about gestational diabetes if I wasn’t already worried about his heart.  Six months after burying my brother, I lost my grandmother as well.  It was overwhelming and emotional, but it had more to do with having lost my brother than it did with having to say goodbye to her.  Losing her made sense – it fit in the general order of the world – whereas losing my brother was unexpected and tragic and made no sense.  This has been on my mind, because I feel like finding out about the gestational diabetes wasn’t such a tragedy in and of itself.  I know women get this and have to deal with it, and I know that so far, I am able to control it with diet and exercise.  But in light of the more horrible news of his heart condition, it just feels that much more overwhelming and hard…and unfair.  But also – not so bad.  Not the end of the world.  Minor in comparison.

My thoughts aren’t as succinct as I would like them to be, but this is what is floating around in my mind this morning.

I have been asked a few times if I am asking myself the question “Why?”  Why does my baby have to have a heart abnormality?  Why am I being put in a position to begin a very long and difficult journey?  Why can’t he just be healthy?  Why me?

Honestly, I learned a long time ago that it is fruitless to ask these questions.  Life is life.  No one ever promised it would be easy or worry-free.  I have been through enough of life in my 31 years to know it can be very unexpected, in both good ways and bad.  I don’t waste time with the Why-me, Woe-is-me crap.  (Not that I NEVER have a day full of self-pity; I do – it’s just the exception and not the rule.)

And – my intellectual mind looks around at all of the friends and acquaintances I have watched bring babies into this world over the last decade – not one of them has had a heart abnormality.  1 in 100 babies is born with a congenital heart defect.  1 in 100.  It is a lot more than you might expect.  Statistically speaking, it’s me.  My baby is the 1 in 100.  It’s just life.

Jalebi, today I’m going to have a Dairy Queen blizzard for you.  Not only because you seem to make me always crave ice cream, but because today, they give back to the hospitals that will hopefully give you the miracle of life.  I know you, too, will have days where you wonder “Why me?” … but I hope we are able to teach you to be deeply, truly grateful for every single day of the crazy, joyous, heart-breaking reality of life.

 

 

My husband, parents, and I are participating in this walk/run to support heart heroes, including our little Jalebi.

Please consider donating – we appreciate your support!

Holly’s HEART HEROES INC Campaign – ACTIVE.com.

In the very short conversations I had via facebook with two members of the Help-a-Heart support group, I could already tell: This was a tight-knit group.  It is like a secret club that you never knew existed – and you never really wanted to be a member – but now that you are, you are so incredibly thankful it exists.  You are so glad there are those that have walked the paths before you – even though you wish no one had to go through all the emotions you are going through.

It is not the first time I have found myself in a “secret club” such as this.  My first experience was after losing my brother in a car accident.  It wasn’t until a year later, in college, that I started reaching out and helped create a grief support group.  I found out I wasn’t the only person who had lost a member of my nuclear family in an unexpected, tragic way.  And since then, I have had the very painful job of guiding other friends and acquaintances through similar circumstances.  Almost fourteen years after the fact, I have become a sort of veteran of this secret club.  Grief is no stranger to me, and I have great empathy for those experiencing its grasp for the first time.

Now I find myself thankful for the veterans of the congenital heart defect secret club.  The women and men at the support group this evening were welcoming and kind.  It was hard for me to share our story – it was hard for me to have tears fall down my face in a roomfull of strangers – but I didn’t leave tonight feeling like they were strangers.  We have a shared story – different but all bound in one common book.

And just as I seek to comfort and encourage those dealing with the raw emotions that come with losing a loved one, these veterans sought to comfort and encourage us.  Many went out of their way to be sure we knew we could reach out with questions and seek support.  It felt good to have such genuine interaction with people we didn’t know just hours before.  That is one thing about these secret clubs – There is no pretense involved, no falseness, no games.

It was overwhelming but also encouraging.  I feel uplifted and stronger, while simultaneously feeling just a bit more worried about what might be coming for us.  But – as we were reminded by a few people – it’s one day at a time.  We really can’t live more than that.

One day at a time.

I have always prided myself on my ability to love without fear.  Many times in my life, I have chosen to love with my whole heart, knowing I would likely end up with broken pieces on the other end.  I have always believed it is better to have the experience of loving wholly, unabashedly, than to never experience that kind of love at all.  The heartache is worth it, in the end.

Still, when I first heard our little Jalebi’s diagnosis, my knee jerk reaction was I needed to start constructing walls.  I needed to be sure I didn’t get too attached to this growing being, even as I start feeling his kicks more frequently and with more certainty.  I felt a need to protect my heart, because it just felt like too much.  Having a baby – being a mommy – is my ultimate dream, and the dream was shattering around me.  I feared my heart wouldn’t make it if I didn’t allow myself to create protection.

Thankfully, this was just a knee jerk reaction.  It was the initial emotion, one my husband admitted to sharing.  It is a very human response – a very selfish response – this need to protect our own hearts.

Since then, we both know and agree we will love this baby boy with everything we have, and we will do everything we possibly can for him.  Whether he is with us for a moment, days, or decades, he will know he is wanted and loved, cherished and not alone.

Besides, regardless of how long we get to have him with us, it is inevitable he will break our hearts.  Perhaps many times – I hope for many times!  This is what children do for their parents.  This is what we signed up for, the risk we took in deciding to have a family.

Jalebi, you are so loved.  As if I really had a choice.  Still, I choose to love.