Week 27

When I was pregnant with Abby the doctor who was to deliver her was a teaching doctor. And so, nearly every week I saw a different intern. Some lovely, capable. Some terrified and unsure of themselves. However, I was "of a certain age" (over 35) so each and every week I was asked the exact same questions by each and every intern: "Are you going for your amniocentesis? Are you going for your triple screen?" (Those in the medical profession please correct me if I've forgotten the name.) The answers to each of those questions was "no" every single week (why they didn't note that in my file was beyond me). Some of those interns would get a frightened look on their faces when I said "no". "But EVERYONE over 35 gets them done here in Manitoba." I would then calmly look in their faces and ask them "why?". Their response was some type of variation of: "Well, it can tell you if your risk for having a baby with Down's syndrome or spina bifida is higher." "Okay, that's fine but is there anything I or you can do for my baby in utero if it's discovered that the risk is higher?" "Well, no." "Okay, well keep in mind that we believe that this child is God's gift to us and that He will help us to care for whatever comes our way. We have no intentions of terminating the pregnancy. So then in my mind the only thing that will happen is that I will spend the next X number of months worrying about my unborn baby and what life will be like afterwards when in all actuality, it only means the RISK is higher, not that I am going to have a baby with Down's syndrome or spina bifida. The thing is, I'm going to worry anyway, it's what I do, I don’t really need to add extra stress by worrying more. So, thanks but no thanks."

I think back on those conversations often with this pregnancy. How I was able to shut the door on worry and how not knowing just felt better to me. Sometimes I wish that I could "not know" for this pregnancy too. Don't get me wrong, I think it's in Jack's best interests that we know now. That they can prepare ahead of time and learn and study. I do understand that and I’m thankful for that. But, the worry can burn the eyelids and choke the throat. This week we heard these words: "Next week I want to introduce you to a neonatologist." Why? Well, because Jack will be heading into NICU or intermediate intensive care directly after birth. I knew that he would need to spend some time in there but there was a small part of my brain that was holding out hope that his time in there would only be after surgery. That we would be able to head home as a happy family of four after he was born and we would just have to bring him back in for tests and the surgery. That I would be able to breast feed my baby in my bed. That we would get to hold him and cuddle with him just as we did with Abby. And yes, in this lovely world of mine the sun WAS indeed shining and the birds were singing. But, that's not to be. We have to head home as three, same as we came in. I have to go through the pain of childbirth and then leave my child there. And we have NO IDEA when the surgery will be and how long he will be there as they poke and prod and test him. I know millions of mothers have lived through this. I also know that one day this will all just be a story that we will tell Jack. And yet, for the next three months I also have to know that I don't get to have "normal" and for right now that's just breaking my heart.

Another BIG little word

This weekend I thought to myself that I would like to buy an outfit for Jack. In anticipation. Something to look at, to hold, to touch (perhaps to weep into on occasion) for the next 89 days. That's the first time I've had that thought since January 10th.

You do your work the best that you can
you put one foot in front of the other
life comes in waves and makes its demands
you hold on as well as your able

You've been here for a long long time

Hope has a way of turning it's face to you
just when you least expect it
you walk in a room
you look out a window
and something there leaves you breathless
you say to yourself
it's been a while since I felt this
but it feels like it might be hope

- Sara Groves It Might Be Hope

Update in point form (Week 26)

- The word the doctor used? Stable.
- The size of our baby? Over 2 pounds. Lovely.
- The size of the tumour? Proportionately the same as last week.
- Heart? Still madly pumping. No excess fluid built up around it (one of the signs of a heart in distress).
- His movement? Very, very active. They had trouble getting proper images and kept commenting on how much he was moving. (Actually, they comment on this every week which makes me wonder: Do my babies move more than most as Jack actually moves less than Abby did.)
- The mom and dad? Happy to have made it one more week.
- Days to go until my due date? Double digits! 94 left.
- This Sunday? We enter the third trimester!

Any questions?

Thoughts on a Wednesday

The thing about Thursdays is... I look forward to them. A Lot. They give me peace and comfort. I'm very glad they are there. I'm very glad for that weekly 1:30 appointment. I'm very glad they are keeping such a close eye on our babe. And yet, as one approaches (and especially the drive there) I feel a certain scary sense of impending doom all the same.

Valentine's Day (Week 25)

Our Valentine's date? Seeing our son again and giving candy to some of our favorite doctors and techs. Which, in the grand scheme of things, isn't a bad date. Well, except for that Thing that shall remain nameless.

The head to tumour (okay, so much for remaining nameless) ratio is still the same so that's good. Other than it disappearing altogether or shrinking it's about the best news we can get. His heart is still good.

We formally asked Dr. Schneider and Dr. Mytopher to deliver our son and they formally accepted. And that just feels stupidly good because we seriously heart them. It's felt very foolish to me all along that we would introduce another doctor into the midst when those 2 know us and our boy so well. They are also going to accommodate us as much as possible with just doing the prenatal care at the same time as the ultrasounds which means less time missed from work. AND, the glucose tolerance test that I have to take sometime in the next few weeks? Well, they said "don't bother, we'll just take a vial of blood one of the next times you come in". Lovely, lovely news. It likely sounds trivial in a way but missing more work and seeing more doctors was not necessarily on my list of things I wanted to do in the next 15 weeks.

Hmm, what else? Our boy weighs about a pound and a half already. And you know that little thing babies love to do? The one where they grab their toes while lying on their backs like this:












Well, we got to see Jack do that in my womb. Which, to date, is the coolest thing we've seen on the ultrasound yet.

A BIG little word

The year is 2000. We as a children's ministry leadership team have sat down together to plan out our next series and to come up with actions to some new songs.

Trust, trust in the Lord
Lean not on your own understanding
In all, all of your ways
Acknowledge him
He'll make your path straight

We decide that the action for trust should probably be something like hanging on to a rope for dear life and trying to climb up it, little by little because it's not always easy.

You'll be my God for life
I'll walk by Your side
With your hand in mine
I'll go where You lead me

The year is 2002. I am traveling Europe with 2 of my favorite friends. It is midnight, we are in the middle of rural France with no campground in sight. A song comes on the cd player that makes me smile as I sit in the backseat worrying. It's not always easy.

Trust, trust in the Lord
Lean not on your own understanding
In all, all of your ways
Acknowledge him
He'll make your path straight

We do find a campsite. It is, unfortunately, closed for the season (it's late fall). It is, fortunately, not locked up and we stay anyway.

My eyes can only see
The ground beneath my feet
Your dreams are greater
Your ways are higher
O Lord please show me

The year is 2008. We are teaching the lesson of Gideon in our children's ministry. The one about the fleece and the dew and the Mideonites. Someone casually picks this song. It's been a month (to the day) since we found out that not all is right with this pregnancy.

Trust, trust in the Lord
Lean not on your own understanding
In all, all of your ways
Acknowledge him
He'll make your path straight

Together with the kids I do the actions and sing, hanging on to my rope because it's not always easy.

Bless my thoughts
My dreams my imaginations
Step by step
Your delight, Your creation

Yup, it's Thursday again (Week 24)

Sarah: Hello, my name is Sarah. Loreli is off sick today so I'll be doing your ultrasound.

Cynthia: Hello, Sarah. I'm Cynthia, this is my husband J-L and this is my mom, Margaret.

I climb into bed, pulling up my shirt and pulling my pants down slightly. Mom sits down on the chair and J-L stands beside her.

The transmission gel is squirted on my belly...

J-L: So, is it warm today?

Cynthia: Yup, nice treat, the warmed gel

... and the ultrasound is underway.

Cynthia: Mom, do you see that moving part? That's his heart. And the white lines are his spine. Those smaller white lines are his fingers. And those are his toes and that's...

Sarah: Oh my, I've never seen that before.

Cynthia: Yes, few have.

Sarah: I wonder what I'm supposed to do exactly.

Cynthia: Well, I do know that they measure the circumference every week and do a ratio of it to the size of his head.

Sarah: Oh, okay. I'm not exactly sure where they measure it.

Cynthia: They bring up the shot where you can see the 4 chambers of his heart and they measure the tumour's circumference in that shot so that it's the same measurement they're getting every week.

Cynthia: Plus, they measure his heart rate at his head and his heart as well as at the tumour.

It felt rather fun to be the "expert" in the room. I'd say by about week 36 I'll be able to do my own ultrasounds.

And it was positively lovely having my mom there. I found it a nice distraction to explain things to her instead of just focusing on That Thing.

(The only sucky part was the hour+ wait in the waiting room but 2 techs were off sick so what can you do.)

Things are as good as they could be. His heart is still pumping as it should. He and the tumour are growing at the same rate. And I'm in a much better place than I was last week.

The Unknown

I wasn't going to post this one, I was going to save it for myself and for J-L because sometimes I feel as though I come on here only to whine and other than the bleepin' tumour our life is just so very, very good. But then I asked my sister-in-law and her exact words were (I hope she doesn't mind me quoting her): Transparent is good, whether it's all roses and sunshine or not. And there are many of us who care desperately about how you are, on a day to day basis. Fuel for prayers is not a bad thing.

I'm weary of the unknown. It feels like a large portion of our life is unknown from now until a long time after Jack is born. Here is a list of the unknown:

- can the tumour latch onto his spine or other internal organs
- how big his tumour will get
- if he'll suffer any consequences from the surgery (other than a scar)
- what exactly the tumour is
- when I'll deliver
- whether I'll deliver vaginally or by c-section
- where I'll deliver (there's now a wee bit of talk of sending me to another city)
- whether I'll make it to 40 weeks
- whether he'll live
- will we get to hold him after he is born
- will I be able to breast feed
- when his surgery will be

But there IS one thing we do know. To quote a song that has pretty much incessantly been running through my head for weeks now:

We can laugh and we can cry
And never see the strong hand of love hidden in the shadows

In a more lighthearted vein...

Does anyone else know a 27 month-old who can look at an ultrasound photo and recognize body parts?

And yet more doctors' appointments.

This past Thursday we found out that I will still need to visit my regular GP and eventually my ob-gyn the same as any other pregnancy. As much as they're looking at Jack every single Thursday they are not keeping that close an eye on me. And so it goes. I'm sure there are some of you that wonder why exactly it is I'm whining about doctors' appointments. I should just be glad that we have such an amazing healthcare system and be thrilled that they are keeping such a close eye on this unusual situation. I am. Very, very glad. But the thing that puts the lump in my throat and the tear in my eye with these constant appointments is exactly that word: "constant". Over and over and over again we have to be reminded how nothing is normal and there is a chance nothing will ever be as it was before. And over and over and over again we get asked the same questions and we ask the same questions and we really know nothing more than ever and neither do they.

I remember that when my dad died, it seemed that day took on everlasting meaning. Things either happened before or after August 8, 2003. We have a new date like that. Everything happened before or after January 10, 2008.

And so off we trot to meet with my gp this afternoon. And if she DOESN'T find out that my blood pressure is kind of high and if the number on the scale DOESN'T shock her while then *I* will be amazed.