why ultrasounds make me anxious

Today's the big day.

The day we've been talking about and waiting for since this pregnancy surprise started.

Our 20 week ultrasound.

And while I really am excited about finding out this little one's gender, there are other feelings that come up at this point every pregnancy... feelings I've been only somewhat consciously fighting to keep at bay in the last few weeks.

There are many women -probably the majority of women- who go through their pregnancies experiencing nothing but joy and excitement and happy anticipation from the day they get that positive test result until the day they leave the hospital, new baby wrapped in arms. Unfortunately, I know that that's not always how things play out.

I know the shock of learning that the baby you're carrying is very sick. I know the pain of hearing a fatal diagnosis for the little one that you've already carried for four months and come to love unconditionally. I know the fear of never knowing, from one day to the next, whether your unborn baby is even still alive... waiting each morning for those little reassuring kicks before being able to even get out of bed. I know what it's like to watch your baby take his last breaths and have to hand his tiny body over to a stranger only a few hours later. I know what it's like to wake up the next morning (still on the maternity ward -surrounded by beaming parents and new babies- because the hospital was COMPLETELY FULL that night) and feel the reality of your loss wash over you in almost suffocating waves of grief.

I know what it's like to leave the hospital with empty arms...

Our journey with Nathaniel started at that 20 week ultrasound. What we'd incorrectly assumed would be a "routine" scan. 

And so at this point with every pregnancy, it's hard not to think about how this same moment (five and a half years ago) completely changed our lives. Yet even as I write this, the new little one inside me is kicking me, trying -I hope- to tell me that everything is okay.

But what if it's not?

Our experience with Nathaniel taught us many things...

It taught us about ourselves and each other.

It taught us that the type of love we have for our children -even our unborn children- is not something that can be turned on and off... even if convinced that not loving would be easier.

It proved what an amazing, loving and supportive immediate and extended family we each belong to. It showed us who our real friends are.

It taught us, in a very real although painful way, that God is who He is and His promises don't change, even when our circumstances do.

It taught us what grief really is... because we had NO. IDEA.

It gave us the ability to truly empathize with others who are hurting.

It gave us the opportunity, in our weakness and brokenness and pain, to find a new perspective on life... this one and the next.

It showed us we were stronger than we thought we were.

These are all things that were "bought" at a price. A very dear and precious one. We would no more trade these lessons learned than we would give up our time with Nathaniel... even if it would've saved us the pain of losing him. I'm not saying that these things justify his death or make it okay, but I know that his life -and his pain of his loss- weren't wasted.

So what if this ultrasound shows us something other than a perfect and healthy baby? What if we once again hear the tech's voice go from happy and chatty to grave and silent? What if the results bring the type of news that is every parent's worst nightmare?

I know we'll survive. We survived before. And we have three other little boys at home to show us on a daily (if not minute-by-minute) basis that life is worth living and that loving is worth the risk.

(All that being said, we'd appreciate any prayers or thoughts or happy/healthy/calm vibes for this afternoon. Like I said, I'm excited (REALLY!) but it's impossible to not feel a growing sense of anxiety and fear mixed in with the anticipation.)

he would be five

Another year has passed.

Another year with a hole in our family right between Liam and Simon. This hole is imperceptible to most -even those who know it exists- but, to me, it's gaping. This hole should contain a little boy whose birthday we would be celebrating today. A likely loud and crazy five year old to add to the already loud and crazy chaos that reigns here most days.

It's a Nathaniel-shaped hole.

* * * * * * * * * * * * *

Because Pregnancy and Infant Loss Remembrance Day is October 15th each year, and the anniversary of Nathaniel's birth and death is October 19th, the middle of this month is always rather... emotionally charged. Even if I wanted to "forget" this day was coming, it would be impossible.

Not that I want to forget. THAT would be impossible.

* * * * * * * * * * * * 

Five years later, I can say that the sting of Nathaniel's death has gone out of my memories of him (hazy, dream-like images seen through the heavy fog of exhaustion and powerful anaesthetic drugs). The searing intensity of grief and loss has ebbed. The rawness is gone. The pain is still there, but it's more of an ache. A dull roar rather than a piercing scream that tears through my heart without any warning. A throbbing that lies below the surface, always present, but now covered over by the experiences and life lived over the last five years... including the addition of two life-filled little boys and the anticipation of the newest member of our family. 

But it is hard not to wonder what our life would be like with him still in it... what HE would be like.

An almost-black-haired little boy with eyes that would have likely turned some shade of brown, like Andrews. I'm sure that, like Liam and Simon, he'd love all things Lego and Star Wars and Clone Wars and Bionicles, and would gravitate towards heros like Indiana Jones and Iron Man and knights and soldiers and super heros. I know he would laugh at America's Funniest Home Videos and Garfield comics and Wipeout along with his brothers.

I wonder if he'd sit quietly and spellbound during our readings of The Hobbit or The Chronicles of Narnia like his older brother, Liam, or if he'd squirm in his bed like his two younger brothers. I wonder if he'd prefer soccer or hockey. If he'd have allergies like Simon and Andrew, or be able to eat anything like Liam. If he'd be reading on his own yet, or riding a bike without training wheels. I wonder what his personality would be like. What would be his strengths and weaknesses? What kind of brother would he be? What kind of son?

I do know that he would be loved.

* * * * * * * * * * * * *

Somewhere today, that sweet boy who I will have to wait my lifetime to know is celebrating his fifth birthday with his cousin, Lachlan, and with his grandpa, my dad. He is perfect and whole and healthy and happy. He is being toasted by angels and sung to by family and friends who have passed before. He is surrounded by love and light and the glory of God. 

And he is loved.

* * * * * * * * * * * * 

For those of you who are new(ish) to this blog, here is the video we played at Nathaniel's service. For those who've been reading for awhile, no obligation to watch it again. I know it's not a "fun" thing to watch. It is, however, almost all we have. The little box of mementos from the hospital -his bracelets, copies of his hand and foot prints, the comb we used to brush his hair, the tiny preemie sleeper we dressed him in- all those things are thousands of miles away in a storage facility in Ottawa. And his little grave is next to his cousin's in Regina.

And so we watch his video and experience again the wonder of his birth, the pain of his loss, and the love we will always feel for our sweet boy, Nathaniel Achaziah Bundy.      

broadsided

Last night before bed, I decided to look back to see what I'd blogged on Nathaniel's birthday last year. It turns out we didn't do much to celebrate or otherwise mark the day. The boys and I had just returned from a visit to Regina, getting in at 1:30am, so we hung out at home as a family and played in the leaves.

When I crawled into bed last night (much too late as usual, but this time due to a certain 9 month old who decided that he'd rather cry from midnight til 1am rather than sleep), I was still thinking about last year and trying to decide what we would do this year when it hit me...

That trip was the last time I saw my dad alive.

I did talk to him many times between that day and his death, but that was the last time I saw him. It's been A WHOLE YEAR since I looked in his eyes. A YEAR since I hugged him. A YEAR since I looked him in the eyes and told him I loved him. And as that realization hit me last night, I felt... it's hard to explain. My head felt heavy and my chest ached. I felt dizzy and a bit out of breath. Sometimes I'm still taken aback at what a physical response we can have to emotional pain. I. Miss. My. Dad.

The night before we left Regina  was also the night of my dad's first kidney dialysis treatment. After months of me saying that my dad was being over medicated, he was finally transferred to a doctor WHO AGREED. He discontinued half a dozen meds and arranged for the dialysis to help flush out  the medication and toxins that had been building up for most of a year (if not longer). I remember walking into the room with my mom half an hour or so into the treatment, to find my dad with his eyes open, alert, and responsive. Talkative even! This was amazing. For weeks he'd been sleeping all the time, not able to hold a conversation, barely even able to keep his eyes open long enough to answer a simple yes or no question.

During the hours we spent with my dad that night, my mom and I were able to ask him some of the questions  that he hadn't been able to answer in the weeks prior. There were so many decisions that had to be made in regards to his care, many of which my family was collectively feeling the burden of having to make without knowing his wishes. He still wasn't ready or willing to discuss funeral arrangements or anything to do with a memorial service, so we didn't push that matter.

I remember so badly wanting to ask him about death. I needed to know how he felt. Was he scared? Did he still stubbornly refuse to even consider the fact that he might, in fact, be dying? Had this last year, with its multiple surgeries, infections, pain, loss of dignity, etc, etc, ETC, changed his faith? What where his thoughts on God? Standing by his bed, trying unsuccessfully to make the words come -willing them to ask themselves- my mouth and mind refused to cooperate. It was one of those moments like in a dream, where you try to talk or scream but can't. The words wouldn't come. When I was finally able to choke down the lump in my throat, I managed to ask him whether he'd been thinking much about death and his response was a clear and articulate, "I'm not afraid to die." And when asked about his illness and God, my dad responded, "God doesn't change, and my illness doesn't change anything."

* * * * * * * * *


I'm not sure why I feel so compelled to share this part of my dad's story on this, what would be my baby's fourth birthday. Partly I think it's due to being able to see Nathaniel's birthday from a long way off. As early as the summer months, I see it coming. June holds the memories of all the initial testing we had done and the news of the Trisomy 18 diagnosis. With July (which always seems to go too fast) comes the knowledge that August is quickly followed by September, and once September hits, it is impossible to ignore October close on its heels. It doesn't sneak up on me anymore.

But this whole thing about not having seen my dad FOR A WHOLE YEAR, well it came out of nowhere. These two great losses -the loss of my dad and my son- have come together in a not exactly pleasant kind of way. Grief has a way of compounding. Compounding in a way that those who have not experienced wave after wave of intense, crushing pain that are the result of a great loss can ever truly understand.

So this year, thoughts of my should-be-four-year-old boy are entwined closely with memories of my died-too-soon father. I hope it doesn't sound too contrived to say that I am who I am, in part, because of theoe two. My relationship with them and the loss of them profoundly shaped and changed me. I am so proud to be my father's daughter. I am so proud to be Nathaniel's mum.

I hope they are proud of me.

From Mourning to Dancing: Part V

(apologies in advance for the funky paragraph spacing)


From Mourning to Dancing: Part IV

Sept 16th, 2005

We  met with an obstetrician this week to discuss the option of early induction around 37 weeks.  We feel that this will give us the best chance to meet Nathaniel alive, while also making it possible for our families to make the necessary arrangements to be with us. 

To be honest, the meeting was quite frustrating. Beyond frustrating, actually. The doctor didn’t have a problem with my being induced early, but when we started discussing the option/possibility of needing a c-section, she was less in agreement with us. Basically, we want the whole labor and delivery treated like a normal pregnancy -like any other pregnancy- up to and including them performing a c-section if Nathaniel is showing signs of distress. But from their point of view, they figure there’s no point putting the mother at risk (since it IS major surgery) when the baby isn’t going to live anyways. They see only risks without benefit. For us, the benefit of having even a few minutes with Nathaniel would be worth the risk!

What really upset me was the doctor listing risk after risk AFTER RISK associated with a c-section. Not only that, but she made some comment about, "What would happen to your other little boy at home if something were to go wrong?" 

What am I supposed to say to that??!

If it were a healthy pregnancy, but the baby was, say, breech, she'd be playing down the risks and assuring us that they do thousands of c-sections each year! She certainly wouldn't be trying to scare/guilt me out of it. 

We really just need for the doctors to be understanding and helpful in making the best out of this situation, and that they’d understand and respect our wishes. After going back and forth for quite awhile, I think we finally got through to her. At least I hope so...

The problem is that she’s one of about eleven or twelve obstetricians who are on call at the hospital. So our efforts to make her see our side may all have been in vain if she's not the one on call that night. I have this fear of being on the table in the delivery room, with Nathaniel’s heart rate dropping, having to argue and plead for some strange doctor to give our little boy the same chance they would give any other boy.

Our greatest hope and prayer and the thing that keeps me up crying long into the night is that we be given some time (any time!) with Nathaniel to hold him, meet him, and tell him how loved he is. The obstetrician reminded us several times how the majority of babies with Trisomy 18 undergo “fetal demise” (which was certainly not news to us, nor was it helpful!), and we just really don’t want that to be the case – especially after carrying him for this long.

* * * * * * * * * *

We’ve just found out that Peter’s parents (who are missionaries in Africa) will be able to be in town from Oct 17^th til the end of the month. As long as I don’t go into labor early (which is a real risk with my amniotic fluid levels continuing to increase), we plan on my being induced around Oct 18^th or 19^th so that they’ll be able to be with us and meet Nathaniel. We’re so thankful that it’s going to work out for them to be here! Being able to somewhat schedule things will mean that my family will be able to be here from Regina too. What a gift.

* * * * * * * * * *


Peter and I are currently trying to decide where we want to have Nathaniel buried. We're in Calgary right now, but know that it is a temporary situation while Peter is in school. But Regina is so far away. Not having done this before, we don't really know how much -or even if!- we're going to want to visit the grave site. Burying him in Regina would make frequent visits impossible. However, we know we won't be living in Calgary forever and I get ill at the thought of flying away for the last time and knowing that he's being left behind. Then I remind myself that it won't be him. Are we even going to want to visit a place that will do nothing but make us think of his little decaying body lying in the cold ground? Will we find comfort there?

We just don't know.


(AND HOW SURREAL TO BE PLANNING BURIAL ARRANGEMENTS INSTEAD OF A BABY SHOWER.)

* * * * * * * * * *


After finishing up the last few hours I need in order to be eligible for maternity benefits (thanks to crossing the picket lines at Telus -I know, I'm a scab... my apologies for having things on my mind other than Union squabbles- and thanks to Peter's sister, Sara, being in town to spoil babysit Liam ), I am now off work and able to enjoy these last few weeks of being pregnant, trying to make things as fun and normal as possible for Liam. 

Speaking of which, we’re potty training right now BECAUSE I DON'T HAVE ENOUGH ON MY PLATE. Actually he’s doing great and it’s turning out to be much easier than I thought it would be. We'll see what happens when his life gets flipped upside down...


Liam is such a joy for Peter and me through all this. He pointed at my stomach the other day and said, “Too, TOO big Mummy”. He refers to my stomach as the “BIG tummy” and his own as the “Little tummy”. How can we not smile when around him? Nothing brings me out of the depths of my grief more quickly than his shining face.


* * * * * * * * * *

Looking back, it’s hard to believe that the summer is basically over and Nathaniel will be here in less than a month. I’m sure these last four weeks will go by much faster than I’d really like. While part of me is relieved by the thought of not being pregnant anymore (and being able to get off the couch without help!), it’s also bitter sweet to think that this will all be over soon. 

Most births are a beginning, but this story will end before it really starts.

we grieve with hope

This week in October is always a hard one for me. I wait for it each year, anticipating it's arrival, yet it always sneaks up on me.

October 15th is Pregnancy and Infant Loss Remembrance Day, and four days later, October 19th, is the anniversary of Nathaniel's birth. And his death. He would be four years old this year.

For those of you who may be new to this blog, our second son, Nathaniel, had a rare chromosomal abnormality called Trisomy 18 (or Edward's syndrome). We chose to carry him to term, knowing full well that his condition was "incompatible with life" and being told at each turn that he would very likely die in utero prior to birth. Except that he didn't. We were blessed with two hours with him... although it wasn't enough. It could never be enough.

When I started writing his story, without formally thinking it or saying it out loud, I kind of/sort of/really hoped to have it done by his birthday. So that I could post on his birthday about his birth day. But unless I do absolutely nothing in the next four days other than write -and unless I write such long posts that likely no one would be interested in reading them- I don't think it's going to happen.

And I'm a little disappointed. In myself. Like I let him down.

I know that that's silly, and that it's about me, not him. Nonetheless, I wish I'd worked more diligently to finish his story on time. But when I ask myself who I'm writing his story for and why I'm writing it, I have to admit that (while I'd love it if you would all take the time to read it) in as much as it is "Nathaniel's story", it's my story too, and I write it for myself and for these other little beings who call me "mom". So that one day they'll be able to read about their brother, and also begin to understand who I was then and how that experience changed me.

How Nathaniel changed me.

It is a story of loss and pain and grief, but also of hope. So I remember him tonight on Pregnancy and Infant Loss Remembrance Day as I remember him everyday. I am thankful for the oh so brief time we were given with him, and I am thankful for the hope.

thinking I might need to clarify

Reading through some of the comments and emails I've gotten after posting the email we received from Peter's dad, I think some clarification is needed. 

I posted his email because, while reading through old correspondence from that period of our life in order to write Nathaniel's story, I was struck by this particular email from him (one of many). I was truly touched by it.

When I read his words with the added perspective that only time can bring, I don't see a challenge or admonition -which is how I fear some of you took his email- but rather an attempt by a grieving father and grandfather to make some sense of a senseless situation and to try to offer some (any!) comfort to us, his children. 

I'm afraid that some of you read his email and felt it cold or harsh, when I know that's so completely not the case. When I first read it, I might've rolled my eyes and was likely a bit angry (NOT at my father-in-law, but at the God who I felt was, if not responsible for our son's sickness then at least unwilling to do anything to change it). I KNOW  I cried. While I'm sure I recognized the Truth of his words when I initially read them four years ago, my heart was so broken that I couldn't see passed my own suffering enough to find any comfort there.

When I read it again, last week, I read the words of man who was hurting -hurting for us AND with us- and who was confused and grieving, but who was also hopeful and trusting and who was holding fast to God's faithfulness. I'm sure that this second reading produced the effect that was desired when the words were originally written... I was encouraged and comforted and reminded of not only my father-in-laws love, but of my Heavenly Father's love.

God did not promise a life without pain, yet He will not waste our suffering.

He is totally worthy.

If you haven't already, go back and read the email in question. Read it afresh, with a bit softer heart and with a bit of background knowledge about that time and place. Hopefully you will find yourself as blessed by the words as I was... that's why I posted it!

(Related: I have a wonderful father-in-law.)

From Mourning to Dancing: Part IV

From Mourning to Dancing: Part III

What follows is an email that my father-in-law wrote to us sometime during the late summer of 2005, while we were still in shock over Nathaniel's Trisomy 18 diagnosis. Although of little comfort at the time (in fact some of it probably made me angry), I now hold his words, and the Truths the convey, very dear to my heart.

Dear Peter and Amy,


This letter has been very long in coming. I'm sorry.


I've been thinking and praying about you and Nathaniel and wanting to encourage you somehow in this tough time.


I can't say, "I know how you feel."


I don't.


I do, however, know how I feel (even though Mom sometimes accuses me of being a "non-feeler"), so I'll try to express that.


I'm sad. I'm especially sad for you. Dashed hopes are always sad. The fact that it happens so often in our lives doesn't make it any easier, and this is a much more significant even affecting a little person you love and for whom you have waited months.


I'm not angry with God, but I admit to wondering what He has in mind for you. My trust in God has grown over the years to a point where I don't often accuse him of improprieties, but He often surprises me by things He does or allows. When that happens I'm sometimes a bit like a Pinocchio questioning the wood carver! It's so absurd and the extreme of pride to think that God might need my advice, but here it is! Pride is what doomed Satan to expulsion from heaven, and it is probably the root of all other sins. Nevertheless, I'm still finding roots of it in my life as I work my way through my reactions to your situation with Nathaniel.


I know that God is good, loving, gracious and merciful. He is totally wise and knowing so that He applies those qualities in our circumstances from a perspective that is eternal and perfect. Yet I question him! We humans dare do what no other part of creation does. And He puts up with it.


All this is to say that God is also using your journey to do some molding in my life. I'm also convinced that God knows what He is doing, but we may not see the answers in this life.


So, yes I'm sad, but I'm growing.


I want to ease your pain without knowing how. I do know that God loves you very much. I do know that God never promised a life without trouble, but did promise the possibility of triumph in that pain. The pain you feel is very uncomfortable and I am unable to relieve it. I feel like the Old Testament king who in desperation prayed, "God, I don't know what to do, but my eyes are on you."


I'm so very sorry you are going through this. One crowing truth that made an impact in my mind and heart today was this: No matter what pain I go thought in life, Jesus warned me in advance that there would be trouble and He is totally worthy of my life regardless of that pain.


Does this cheapen the experience or the pain we feel? Not at all. Although it doesn't provide answers to the "whys", we know that we are accompanied by one who understands, and one who wants to make us stronger as a result. It removed us from the category of "victims" and makes us "soldiers" in a battle whose final outcome is victory for those who remain steadfast.


I love you,
Dad/Craig/Grandpa

From Mourning to Dancing: Part V

From Mourning to Dancing: Part III

From Mourning to Dancing: Part II

August 31st, 2005

Many doctors appointments and ultrasounds later, minutes began to feel like hours and days like weeks. It all felt so surreal. Like a dream. Time stood still as it whizzed passed.

One of the ultrasounds was actually an echocardiogram, to take a closer look at the heart. Originally ordered after the initial u/s (the one showing a possible hole in the heart), it was canceled after the Trisomy 18 diagnosis. Canceled. Without checking with us. This was the first of what would be many instance of the medical community giving up on our son. Why probe further when the outcome will be the same? Why waste time and resources on a baby who is essentially already dead??

From the beginning it was clear that most doctors had very little -if any- experience with babies with Trisomy 18. What they knew, they had learned in textbooks. Textbooks that told them that these babies had NO CHANCE of life. Textbooks that instructed them to advise their patients to terminate. When most parents are faced with a list of defects as long as their arm (as we were) and the doctor -the PROFESSIONAL- sitting across from them is describing their baby in a way that makes them afraid to see it, many of them do choose to terminate, which leads to even fewer instances of real-life, practical experience with Trisomy 18.

We weren't prepared to give up that easily.

When I learned that the echocardiogram had been canceled, I called the office and made it clear that we wanted all of the tests available in order to be fully prepared for our son's birth. They agreed and rebooked for a few weeks later. The echo wasn't terribly useful in telling us anything we didn't already know (he had a small VSD (Ventrical Septal Defect), but it was not big enough to even require surgery in an otherwise healthy child), however it did afford us another chance to see our son and to meet with the perinatologist -as biased as he was against continuing with the pregnancy- and ask a few more questions.

Regarding the baby's heart defect and kidney problems, the doctor was clear that neither of those issues would be our son's cause of death. Neither were fatal. I remember sitting there looking at my hands in my lap and repeated asking, "Well what will he die of then?". The doctor, kind and calm but obviously slightly exasperated, kept going back to the Trisomy 18.

"He has Trisomy 18."

You see, most of the stories we had read were of babies who had complications in addition to and because of the Trisomy 18. Serious complications. They were missing organs, their esophagus wasn't connected to their stomach, they had spina bifida, their organs were growing in their umbilical cord... serious stuff. Stuff that, clearly, was fatal. You could easily see that a baby can't live with ___________ (fill in the blank with one of a plethora of problems).

But our baby, although measuring small, didn't have any of these serious complications. So why would he die? WHY??

"He has Trisomy 18. Trisomy 18 is incompatible with life. He will died from having Trisomy 18."

We struggled to wrap our heads around this. If everything worked, why was our baby going to die?

* * * * * * * * * *

Around this time, I also started to get big. And by big, I mean HUGE. According to the ultrasounds, I had 50% more amniotic fluid that was normal. This polyhydramnios (excess amniotic fluid) is common in pregnancies with T18 babies. Although our baby was barely in the 10th percentile, I was measuring 5 weeks ahead of where I should have been. While all the extra room was likely lovely for the baby, it made me very, VERY uncomfortable. At 29 weeks, I was almost as big as I was at full term with Liam. The polyhydramnios also put me at an increased risk for preterm labour and other possible complications, both before and during labour.

It also increased my anxiety. We worried it would affect our chances of seeing our boy alive.

* * * * * * * * * *

It was around this time that we also decided on a name for our unborn son. We chose his names based on their meanings. We chose Nathaniel for his first name, which means "God has given, or gift from God", and we chose the name hebrew name, Achaziah for his middle name, which means "God has taken".

Nathaniel Achaziah.

Job 1:21-22 says,

²¹He said,
"Naked I came from my mother's womb,
And naked I shall return there
The LORD gave and the LORD has taken away.
Blessed be the name of the LORD."
²²Through all this Job did not sin nor did he blame God.

Nathaniel's name was a reference to these verses. Together his name means "God has given and God has taken." Even though we didn't understand the how and whys of our present circumstance, we chose to recognize God's sovereignty in our lives and the life of our son. Our decision to carry Nathaniel to term was based on our belief that it is God only who has the right to decide when our son would die. Nathaniel was a gift from God. He knew how the story would end.

We didn't.

From Mourning to Dancing: Part IV

From Mourning to Dancing - part II

Part I

With the Trisomy 18 diagnosis confirmed, we decided that the easiest way to let people know would be a mass email. A pretty impersonal way to find out news of that magnitude, but we knew we were not up to re-telling the story dozens of times and having to exlpain the details over and over. The term "incompatible with life" was still ringing in our ears. We didn't want to have to repeat it at nauseum.

The response from our family and friends was overwhelming. We received emails from all corners of the globe, from friends we'd lost touch with, and from people we'd never even met., but who had somehow heard our new. Many people included poems, scriptures, or verses from songs, the majority of which went unread. The news was much too fresh and our emotions were much too raw for any of it to be helpful at the time.

We spent most of our spare time researching and reading. I joined a support forum for families dealing with a Trisomy 18 diagnosis. Much of my time there was spent reading of the experiences of other families. Other families who had lost babies. I read their stories, looked at their pictures, and cried.

Sometimes it felt like I did nothing but cry.

* * * * * * * * *

After doing almost unending reading online, talking, and really searching our hearts we knew what we were going to do. We knew that we'd never be able to end the pregnancy early. It might have been easier in some ways, but we knew it wouldn't make the pain any more bearable.

The option of induction and ending the pregnancy early was tempting, thinking I'd somehow save myself some pain by not really having a chance to bond with the baby. Because if I could convince myself that I hadn't already bonded with him, that he hadn't already become a part of the very fiber of my being, that he hadn't already taken over every tiny crack and crevice of my heart, and that I hadn't already planned an entire future in which he was an integral part of our family, well it wouldn't hurt so much. Right?

But we knew how much we already loved him. Once it was said and felt, it couldn't be taken back. We still wanted to meet him and see him and hold him. We decided to do everything possible to love our baby while he was still inside of me and for as much time as we'd be given with him once he was born.

While clicking through the archives and galleries of the Trisomy 18 Support site, I found myself focusing on the stories of the babies who had lived for at least a short time after birth. I didn't want anything to do with the stories of babies who had miscarried, or died in utero or during birth. I couldn't handle the thought of that happening to us. Our biggest hope was for time.

* * * * * * * * *

In Romans chapter 8, it talks about the Spirit interceding for us in groans too deep for words.

Groans too deep for words.

That so perfectly describes my state, my heart, my depth of grief at that time (and for a long time afterward, but I don't want to get ahead of myself). It was near impossible for me to pray. I'd get as far as "Heavenly Father, please..." before dissolving into tears and wracking sobs.

Thankfully, even though my words wouldn't come, I knew that those who loved us were praying. When pressed for specifics, these were our requests:
- that I would be able to carry our son to term or as long as possible to give him the best possible chance
- that I wouldn't go into early labor
- that he would be born alive (!)
- that we would have at least a few days with him, even being able to bring him home with us
- that we would be able to plan this all in a way that would allow for our family to be with us when he's born - to meet him, hold him, and help us celebrate his life.

The difficulty in planning something like this was that most Trisomy 18 babies don't survive pregnancy. There's a high risk of them dying in utero. Initially we hoped for a scheduled induction or c-section (more risky for me, but it would have given the baby a better chance, as labour -induced or occurring naturally- would be very stressful for his heart) around the 37-38 week mark. Scheduling the birthday was especially important for Peter's brothers,spread out in the States, his parents as far away as Egypt, and his sister possibly in Spain. Having missed the chance to hold our nephew, Lachlan, when he was born, I knew personally how important this was.

* * * * * * * * *

One of the worst things during this period was the constant uncertainty. Only three days after receiving the diagnosis, I found myself constantly worrying about whether he was still alive. And would he be with me tomorrow? The upside was that I was able to truly enjoy and cherish each little flutter of movement. He was quite active (even at only 20 weeks!), although that made the situation that much more unbelieveable. He seemed so healthy and active.

In those early weeks, we really stuggled over the lack of control that we had over the whole situation. You know the Serenity Prayer? "God grant me the serenity to accept the things I cannot change; courage to change the things I can; and wisdom to know the difference." Well, we couldn't accept what was happening OR change it. We were stuck. It all seemed surreal. We hadn't quite come to terms with it (likely never will), but we were slowly able to accepted that we had no power to change it. We were determined to enjoy the pregnancy as much as possible since it might be all the time we would be given (at least we decided to be determined. At some point...).

It became clear though that being sad and depressed all the time was not helping me or the baby. I had not been sleeping much, had next to no appetite, and could hardly keep down what I did manage to eat. At that point, it was not longer morning sickness - it was the stress of it all. So I decided to (try to) control what I could, and resolved to be happy and healthy for my baby's sake. That was easier said than done however.

If I wasn't playing with Liam and trying to hold it together for his sake, I was crying. So Liam, our little just-turn-two year old ball of energy, sunshine and happiness, quickly became Peter and my sole focus. He was already the center of our little world, but he became (quite seriously) all that kept us going.

I clearly remember sitting with Peter on the stairs to our backyard deck, watching Liam play with the pool we had set up for the summer. He was throwing toys and sand into the newly filled pool, but, as it was only a few days after the diagnosis, we didn't care near enough to stop him. Peter and I were both lost in our own thoughts when Peter said, "If it wasn't for Liam, I'd go drown myself in that pool." I knew he was serious.

Some of you might be taken aback by that, but I wasn't. Not at the time. Not when I felt as awful as he did. But I wasn't worried, because I also knew exactly how he felt about Liam, how much he loved that little boy, and how that love would keep him going.

It was keeping me going, too.

P.S. I Google "Serenity Prayer" to be sure I was quoting it properly. It's obviously been a long time since I've seen the entire prayer (even though it was hanging in my parent's staircase since, oh, TIME BEGAN), and I was blown away by the prayer in its entirety. I'll post it here for all your benefit. It's lovely.

God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.

Living one day at a time;
Enjoying one moment at a time;
Accepting hardships as the pathway to peace;
Taking, as He did, this sinful world
as it is, not as I would have it;
Trusting that He will make all things right
if I surrender to His Will;
That I may be reasonably happy in this life
and supremely happy with Him
Forever in the next.
Amen.

--Reinhold Niebuhr

Part III

From Mourning to Dancing - part 1

I first read about Stellan many months ago. I forget now how I stumbled onto My Charming Kids, but I was quickly taken in by MckMama's cute kids, her stunning photography and her faith, especially in the midst of what was happening to her baby. And again this week, the blogosphere, twitter and Facebook are being flooded with requests for prayer for Stellan.

This little boy and his little heart have been through so much. He's eight months old, only a little older than Andrew. I'm constantly checking Jennifer's Twitter feed for updates, hoping for good news and at the same time fearing that I might be following this sweet babe's final days.

Yesterday morning, I found myself thinking of Stellan almost constantly. And almost every thought of this little boy (who really I don't know at all) leads to thoughts of a little boy I do know. The little boy that I lost.

I can't help but whisper, "Heaven doesn't need any more babies."

Ever since I added the pictures of all my boys to the side bar, I've been thinking of sharing the story of my second-born. It's still hard when I'm asked, "How many kids to you have?". To say four then requires an awkward explanation, which in turn leads to even more awkwardness on the part of the questioner. But the easier response, "Three", makes me feel like I'm denying him.

I've sort of felt the same way here on my blog. I've shared his video, but not the whole story. I don't want to feel like I'm denying him here. I'm proud that he is my son! Poor boy doesn't get much play on the ol' blog though, so it's time to rectify the situation.

At the risk of people thinking that I'm somehow trying to capitalize on Stellan's story (which I'm TOTALLY NOT. I've been crying over little Stellan and praying for strength and peace for his parents -peace that passes understanding, peace that defies understanding, peace that-is-in-no-way-related-to-understanding because you just can't understand a situation like this), but the truth is that thinking of one little boy naturally leads my thoughts to another little boy. One who I've been really wanting to share with you... my son Nathaniel.

Part 1 - The Diagnosis, June 2005

After six months of trying, Peter and I found out in early March that we were expecting our second baby Nov 9th, 2005. Despite all the morning sickness (it's quite clear to me that it was a man WHO HAD NEVER BEEN PREGNANT came up with the term "morning" sickness ), we were thrilled by the prospect of a baby brother or sister for Liam.

I had my first ultrasound Monday, June 13th, in the evening just before going into work for the night. Although she began my appointment chipper and almost annoyingly cheerful, her tone changed dramatically by the end of the scan. She had spent what seemed to me an exceptionally long time examining one particular area, taking measurements and writing notes. Even though she'd turned the screen away from me, I could crane my neck around just enough to see what it was she was looking at.

On the screen was my unborn baby's little head. Even though I am not an ultrasound technician, I could tell that something wasn't quite right. I couldn't remember what Liam's head looked by ultrasound during my pregnancy with him, but this baby's brain seemed to be divided into four unequally circles, black in the middle with a small rim of white.

After finishing her measurements, the technician left the room saying that she needed to consul with one of the clinic's doctors. When she returned she told me several times to call my doctor as soon as possible to discuss the results, but wouldn't explain what she'd seen or if there might be a problem. Even though the U/S technician didn't say anything decisive, she certainly didn't leave us believing that everything was fine. Everything was clearly not fine.

Was there a problem with our baby?

We left the office and I headed to work. I tried to stay calm, but was completely unable to push back the mounting fear. Without anyone there to check me, my mind raced through every possibility, each worse than the rest. By the time I got to work, I was sick to my stomach and fighting back tears.

Even though Peter tried his best to reassure me that everything would be fine, it was an awfully long night. Awful.

The next morning I called my doctor as soon as the office opened only to be told the results wouldn't be in UNTIL FRIDAY. We already knew that something was likely wrong or at least abnormal with our ultrasound, and now I was being told we would have to wait FOUR MORE DAYS before we would find out the results. I called back later in tears, blubbering and sobbing to the poor receptionist, and told her I couldn't wait that long. I just couldn't. I needed to know what was going on. The reception was very sweet and told me she'd see what she could do. Bless her, she called back about an hour later with a twelve o'clock appointment for me. It was nice to know we'd soon have some answers, but then I started to worry even more. They wouldn't have made the extra effort and gone to the trouble to rush things if there wasn't something wrong, would they? It seemed even more likely now that something really was wrong.

A problem with our baby.

I picked Peter up from work and we went to the appointment together. When we finally met with our doctor, he told us that there were several anomalies consistent with Down Syndrome: choroid plexus cysts (cysts on the glands in the brain that normally produce the fluid surrounding the brain), shortened femurs, and a very thick nuchal neck fold (over 9mm instead of under 5mm). I'd declined all the prenatal blood screening, not thinking it necessary as we had no risk factors or markers for, well, anything. Young, healthy, didn't drink, smoke or do drugs, no medical history of any complications or issues, diseases or illnesses. Our doctor explained that these markers on their own would not be cause for concern, but together the painted a rather different picture.

I sat there on that crinkly paper covered exam table, hardly able to take it in what the doctor was telling us. Never did I imagine I'd be sitting in a doctors' office hearing news like that. The part of me that was even able to register how I was feeling knew without a doubt that if I started crying, I wouldn't be able to stop. Peter was sitting next to me and I could see him nodding his head to indicate to the doctor that he understood, but I couldn't make myself turn and look him in the eyes. I was able to keep my voice mostly steady while we asked a few questions, and the doctor recommended an amniocentesis as the next step if we wanted a concrete diagnosis, which we accepted. There was no way I could endure the remainder of the pregnancy without knowing. The amnio was scheduled for the following week, June 21st.

It was an awful week to endure. There was absolutely no way we could look at the situation in a good light. It seemed like all our dreams for our family and this baby were gone. We read about Down Syndrome, researching and visiting DS parenting forums. But even reading all the accounts of how DS kids bless and brightened their families' lives did nothing to comfort us. For us, this news was nothing short of tragic. We were heartbroken. The option of terminating the pregnancy was discussed (it had to be put out there), but was immediately dismissed. We could never live with ourselves. We even talked about putting the baby up for adoption, but really only because we felt we had to discuss all of the options. We knew that adoption wouldn't be an option for us either. The mere thought of it made us feel sick and selfish and cowardly.

This was our baby.

It was tempting to try to distance myself from the baby. To try to tell myself that it would be better to end the pregnancy early rather than have a child who would be so terribly limited in what he or she could do. I pictured Liam running around with a group of boys playing soccer. Running behind them, trying desperately to keep up was another little boy whose face I couldn't quite see. I couldn't see his face, but I could easily imagine a life of being left out and left behind and pushed aside. It was not the life I wanted for my child.

This was not the baby I'd been dreaming of.

June 21st we arrived at the Southern Alberta Maternal - Fetal Medicine Clinic (just the name sounded scary!) just before 9:30am. We were expecting to just have the amnio done, which I'd been told would take about 15 minutes. First though, we met with a nurse who documented my prenatal history. Then they did another complete ultrasound ( a Level II U/S) of the baby from head to toe. The technician was great and took loads of pictures of the baby, a baby who, to us, looked completely normal and healthy and lovely. When she was through, she went out and talked to the perinatologist who then came and wanted to look at some things for himself. He spent extra time on the heart and, strangely, the baby's hands.

When he was through, we sat down together to discuss his findings. Right away he started explaining that all of the characteristics were consistent with Trisomy 18. We stopped him and asked if the baby had Down Syndrome (Trisomy 21). He answered with a definitive no. We were so relieved! I remember smiling and thinking, "It's not Down Syndrome!" He then proceeded to explain Trisomy 18...

(Both Trisomy 21 (Down Syndrome) and Trisomy 18 (Edwards Syndrome) occur when a baby has three chromosomes in either the 21st or 18th position. The risk of having a child with Downs, for my age group, was only 1:1300 live births. Trisomy 18 is the second most common trisomy after Downs. It occurs in about 1:5000 live births, though it's estimated that the frequency among miscarried babies is one hundred times these numbers. Do I sound like a dictionary? I've often felt like one.)

After our meeting with the perinatologist, it was discovered that we were not, in fact, scheduled for an amniocentesis like we'd thought. Thankfully, the doctor was able to fit us in and performed one that afternoon. The amnio was much more painful than I thought it would be (ie. it was excruciating. The doctor figured he hit a nerve on the way in. Nice. I will NEVER forget the feeling as that needle pierced my uterus.) We were told that the full report could take between two and three weeks, but they'd be able to give us preliminary results by that Friday (using a FISH (Fluorescence In Situ Hybridization) test that uses some sort of probe or light to count only chromosomes 13, 18, and 21 which are the most common trisomies).

Without even seeing the results, however, the perinatologist had little doubt that our baby did have Trisomy 18. As he looked through his notes, he began to describe the findings. The biggest red flag for him was the fact that our baby would not open his hands throughout the scan. They remained clenched the entire time. He then went on to paraphrase the other markers he'd seen on the ultrasound:
- small, spread out eyes
- large skull
- very small lower jar
- small, low-set eyes
- short legs and arms
- etc, etc, etc.

Really, he made our baby sound like a malformed little monster. He made us question whether or not we even wanted to see him. How hard would it be to see an obviously sick baby? Are those the images we wanted to carry with us?

As we sat in his small office considering the mountain of abnormalities it seemed our baby already had, the doctor mentioned that he could call the hospital that day and schedule us for an induction. An abortion.

I remember thinking, "WHOA. Hold on a minute! The results aren't even back! We've just heard about this Trisomy 18 for the first time and you're already asking us if we want to end it all??" Even though we'd pondered that same option only the week prior, having someone else suggest it put me immediately on the defense.

This is my baby!

We politely yet firmly declined his offer and explained that we needed time. We also let him know that we were definitely leaning towards carrying the baby to term, in spite of the diagnosis.

After the amnio, we took a break for lunch (and found A $60 PARKING TICKET on our car window since we thought we were only there for a 15 minute proceedure and then completely lost track of time, what with finding out our baby was seriously ill and all. Nothing like getting kicked when you're down, eh) and then met with one of the genetic counselors. Her name was Jennifer and she was kind and informative and great at answering all of our questions and discussing all the possible outcomes and options whether the test came back positive or negative for Trisomy 18. Even with a negative result, the baby would still face a myriad of problems.

Here is a copy of the results from the level II ultrasound:

Multiple fetal anomalies are noted:

Brachycephaly is present with a "strawberry" shaped skull.

The CSP are not identified during the exam. (I think that's a part of the brain that they normally measure the nuchal fold from. The doctor said it just wasn't there.)

The nuchal fold appears mildly thickened, consistent with her prior exam.

The nose is small and the nasal bone is hypo plastic.

There is micrognathia. (which I figured out means a small jaw)

The orbits appear small and are widely spaced, suspicious for hypertelorism.

There is flow across the interventricular septum suspicious for a VSD. The cardiac outflows appear normal (this means there's a hole in the heart)

Both hands remain clenched with the second fingers overlapping the third and the fifth overlapping the fourth. The thumbs remain inwardly fixed with the fingers.

Fetal choroid plexus cysts are noted.

The observed femur length is less than 90% of the expected.

The fetal humerus length is less than 90% of expected.

Both kidney are echogenic though normal in size (this means they showed up white on the U/S when normally only really dense things like bone show up white)

Both heels are prominent.

I didn't understand half of what the report contained, and it was probably just as well at that point. What we did understand (or could figure out with the help of Google) was that even without the chromosomal abnormality, our baby still had a hole in its heart, kidneys that didn't work properly, cysts in its brain, and bits of its brain that were missing.

Thankfully we didn't have to wait two to three weeks for the final results -which would have been shere torture!- as the geneticist called the following day. My heart pounded as I answered the phone and heard Jennifer's voice on the other end. Apparently, one of the lab technicians had insomnia and decided to go into the lab and work all night, meaning our results came back in less than 24 hours (that's what you'd call small mercies). The results were positive for Trisomy 18.

Our baby had Trisomy 18.

What I haven't explained up til now is that, unlike Down Syndrome, Trisomy 18 is fatal. The term we heard several times during our day at the clinic was "not compatible with life." Not. Compatible. With. Life. Most babies die before birth, rarely surviving pregnancy. Those who do make it to birth typically only live a few minutes, hours, or a few days. Less than 10% (of those who even survive pregnancy) live to celebrate their first birthday.

Truth be told, we were pretty numb to the news. We were so cried out from the week prior. We'd spent all our tears and anger and sadness and frustration on something that we didn't think could possible get any worse (than Down Syndrome) only to find out that it could get worse and it did. That night, Peter and I both seemed to feel nothing. Just empty and numb. It took several days to digest and really understand what it all meant.

Not compatible with life.

Our baby was going to die.

Here is part of the email we sent out to our family and friend, sharing with them this devastating news,

It's pointless to think of how unfair this is. How our family (my family) has already been through so much. How we've already had to bury Heather's baby. Part of me would like to end it all right now and not prolong this pain. To get on with our lives and our family. But then I think that going through another twenty weeks of this pregnancy -even with all the pain and heartache and grief and uncertainty- will be worth it if we're able to spend even a few minutes with this baby. After all, he's still our baby.

We love him.

Oh yeah, it's a boy. The little brother we always dreamed of for Liam. The one who was supposed to be a best friend and playmate for Liam, like Peter was for Tim.

We'd so appreciate your prayers for us over the next few weeks and months.

We're having a hard time praying ourselves.

Amy (for Peter and Liam)

Part II