To Honor Fiona and Brigid

Our local newspaper published an article yesterday about TTTS and an event that we have coming up to raise funds for the TTTS Foundation.  It was online and also had a huge section devoted to it in the paper copy with a large photo of the family, and the headline...  Oh, the headline: 

"To Honor Fiona and Brigid"

It was bittersweet.  The editor emailed me to ask if it was okay with me to use their names like that.

I started sobbing.

Um...yes.  That, for me, is the point, really.  Thank you so very much for getting it.

Their names don't feel real to me.  They're sort of abstract, like they're not my children.  But to see them in print like that was so amazing.

I love the photo of our family because it shows that we're all still having fun together.

You can read the article here.  Please feel free to share it with others.  The goal is to make as many people aware of the cause and treatment of  TTTS as possible.  Sometimes, they might have to make their doctors aware.  I know when I asked my OBs specifically about TTTS - because I'd read about it online as soon as I learned we were having monochorionic twins (twins who shared a placenta) - and if I might be able to be seen by a perinatologist earlier for monitoring, they pooh-poohed my concerns.  Both of them (I switched after the first one dismissed my request) felt it was too rare to warrant "extraneous" ultrasounds.  I wouldn't need one before the usual 20 weeks, they said.  I even called the perinatologist to ask if I might be able to come in on my own, without an OB's referral.  They said no.

And yet, when we finally did get that ultrasound, at 19 weeks and 5 days, it was much too late.  The disease had progressed significantly and was in the late stages.

In hindsight, I wish I'd demanded it.  What would it have cost them to have me checked out early?  A form?  Probably not even that.  A computer click or two?  Women who are having multiples who share a placenta need not to feel like they are being pushy or silly for being concerned about this very real threat to their babies.  The doctors and midwives at my OBs' offices are not losing any sleep over dismissing my concerns right now.  They remain completely unfazed by it.

Yet here we are with two dead babies.

I guess this is the anger stage of my grief.  I'm not angry at God.  I'm not wondering why he did this to me or why did this have to happen to me.  I'm angry, though, that my physicians were ignorant, and that, even when I was the one who did the research and brought this disease to their attention at appointments asking to be monitored for it, they did not think it was important.  That is terribly frustrating.  And while I don't know that it would have made a difference in our outcome, it would at least have meant that everything that could have been done to stop it was done.

So now all I can do is warn others.  Be concerned.  Be pushy.  Demand.  No one loves your unborn babies like you do, and you are the only advocate they have.

Due date

It came at 7 p.m. tonight.

Just a little reminder from Google calendar like you might get if you had an appointment the next day.

Only here's what it said:

Reminder: Baby Brigid is due @ Fri Jul 29, 2011

Ouch.


I'd forgotten I had even set up a Google calendar.  I did it while I was on bed rest in an effort to match up the many, many offers of help we were getting with the many, many needs that we had.  I put that date in there so people would know there was an end in sight.  A goal.  A light at the end of the tunnel.  It was so I would know, too, and remember that soon enough the nightmare would be over and we'd at least have one of our little girls.  And of course I knew that she'd likely come early, but that just meant that we'd have her sooner, so unlike all three of her brothers, she'd definitely be here by her due date.  I never expected this.  This date had been in the forefront of my mind for months and months.  And now it's here.  And she's not.

There are always a few dates that a pregnant woman remembers.  At first, it's her LMP date, which she promptly forgets in exchange for her due date.  And then, usually, it's the date that she actually delivers. 

But this time, it's so different, and there are so many other dates I'll remember.

There's the date we found out we were having twins -December 27th

Then there's the date I remember being really excited for: March 9th.  It was the one where we'd find out if we were having girls or boys.  I wanted girls, but seriously weighed it against the possibility that five little boys under five might very well qualify me for automatic sainthood, and that was looking good too.  Either way, of course, we'd be thrilled.  Unfortunately, we never found out the gender of the babies on that day.  What we learned instead was that they had TTTS and that it was bad.  It was a horrible day.  The first of many, as it turned out.

I found out they were girls on March 10th when I called back, crying, to ask.

There's the date we had the laser surgery, March 15.  Followed by the day we learned that Fiona had died, March 16.  (There was no corned beef and cabbage for dinner this St. Patrick's Day.)

Then, in what felt like rapid-fire succession, there was the date that Brigid was born (May 8th), the day we buried Fiona (May27th), the day Brigid died (June 23) and the day we buried Brigid (June 30).

And then now, the only date left.  Their due date.  I'll be glad to have it behind me. 

It seems that Fall will be the only season untainted by our experience. The only one in which there won't be a date that makes me cringe a little.  I always liked Fall best, anyway.

Today I had my follow up appointment with my OB.  It was supposed to be at six weeks, but that ended up being the day of Brigid's funeral, so I had to reschedule.  It was sad not having any babies.  Usually, you bring your baby.  Show her off a little.  I started crying as soon as I got back to the room.  The doctor came in crying.  She'd been the one who did my c-section.  We just passed the Kleenex box back and forth the whole time, and I got to share a little with her about why we're doing okay.  I'm glad for that, because I'm sure I won't be the only person she sees who doesn't have her baby with her at her six week check up.

And I think that fact is the reason that we went through this.  I never would have imagined that I could be doing okay on the other side of something as devastating as this has been, but God has helped us so much.  Through the kindness of friends.  Through the support of family.  Through His own words to our hearts, reminding us of how much He loves us and how He has not left us alone.  Reminding us that He is good and that He has a plan and that we can trust Him.

It's funny - before this, nothing proved to Patrick or me that we could trust God's plan for our life more than our meeting each other.  The timing of it and how perfectly we feel like we had been chosen for each other helped us to know that after years of both of us being lonely, it didn't just happen randomly.  It strengthened my trust in Him.  And I think He used that to prepare me for this.

Tomorrow will still be a sad day, but really, we're doing okay.

Clovers

The clover has become my favorite flower.

Not for the leaves of four that bring good luck -

In all my life I’ve never been able to find one

Search though I may.

This small white weed mars our otherwise perfect lawn.

Finally free from dandelions and crabgrass,

It’s the clover that lingers

And attracts the bees

That make me scared to let my children
Roam barefoot in the grass

As every child should.

Their lightly scented flowers are unattractive,

But their beauty is found

When they are brought to me
By a little boy with outstretched arms.

One bloom chosen from among the many

“For  you, Mommy,” he says, grinning

And then my heart melts

And that flower is more beautiful than any rose.

So many of these blossoms have been handed to me

Each summer by my darling boys.

And just today, with a heavy heart,

I visited for the first time 

The spot where my baby girls lie.

They have been there together for one month now.

As I sat in the grass weeping and speaking to them,

I looked around through eyes blurred by tears,

And noticed clovers there as well -

These ones touched with palest pink.

It felt like my girls were giving them to me too,

And I felt so lucky.

Image:  http://www.itsnature.org/plant_life/flowers-plants/white-clover/

Happy ending

Yesterday was the perfect ending to what had been a very difficult week. Not only did we have to arrange for Fiona's burial, but Brigid had a procedure done that, for a baby her size, was very risky.

The goal was to get a better view of what was going on in Brigid's trachea. The doctors were fairly certain that there was some kind of blockage or a collapse, called a "malacia" and they needed to know which it was so that they could try to fix it and stop the repeated ventilation issues she was having. The surgeon pulled no punches in letting me know the dangers of the procedure - when you are having trouble exhaling, removing your ventilator tube and sticking something down your throat is always tricky. Heck, when you weigh 1.4 kilograms, just getting from the NICU to the OR is risky. He said that usually, when children head back to the OR, their parents worry, but he is fairly confident that they will be fine. This time, he wasn't so sure. Gosh, that was hard to hear, but we both understood that it was important to find out exactly what was going on because of the dangers associated with her not getting enough oxygen or having too much carbon dioxide.

Initially, the brochoscopy was supposed to be on Friday morning, and I was sad because we had Fiona's burial that morning and, knowing how risky it was, I was hoping to be there for Brigid. I knew that the three doctors who were performing the procedure - a pulmonologist, an ENT doctor, and the pediatric surgeon - had busy schedules and if that was the only time that worked for them, I had to just accept it, but when I was there visiting on Thursday, an anesthesiologist came into her room and said, "Okay, we have an OR available in about and hour and a half and would like to do the bronchoscopy today." I was taken aback, but thankful that I was able to be there for it. I called Patrick and he came to the hospital with me. Worried that it might be the last time I saw her alive, I took a few pictures of Brigid before they took her to the operating room.

She was heavily sedated and for the few days before, had even been on a paralytic medication, hence the ointment for her eyes that frequently stayed open and her little tongue sticking out. It was so hard to see her like this, but it was the best way to ensure that she wouldn't move and displace her ET tube.

But the procedure went off with out a hitch and they were able to get a better view of the Brigid's trachea. They determined that at the very far end of her trachea, Brigid has a floppiness where there is supposed to be more of a rigidity. It's called distal tracheomalacia, and the surgeon felt fairly confident that she could grow out of it eventually. It was so good to learn exactly what was going on, and the respiratory therapists have been able to add a little more pressure to her ventilator settings to help keep that end of her trachea open, enabling her to ventilate her carbon dioxide much better than she had been.

Because of this, they have been able to take her off the paralytic medication, resume her breast milk feedings with an NJ tube - one that goes directly into her intestines, bypassing her stomach altogether - and she can just grow. We are praying that she is able to outgrow the tracheomalacia altogether and will not require a tracheostomy in the future, though that is something she may need eventually.

Yesterday, when I went in for a visit, her nurse surprised me by asking me if, after we did her hands-on care and diaper change, I would like to hold her. I was beyond thrilled, as it would be only the second time I'd gotten to hold her since she was born. She warned me that it might just be for a short time, as we'd have to monitor her carefully to see how she tolerated it. I understood and was grateful to have her in my arms just for a moment. So we worked together getting all her tubes and wires secured and carefully moving her from her bed to my arms in the rocking chair. She tolerated it beautifully and did not have one single alarm on her machines or any issue whatsoever. I got to hold her for an entire hour, singing to her and kissing her sweet face. I'm pretty sure she knows my voice now, as she tries to open her eyes whenever she hears me and will often smile behind all the tape holding her tubes in place. It is so very sweet to see.

The nurse took a few photos of us:

When I called this morning, her nurse said she had a great night and that they had been able to increase her feedings overnight to 3 mL per hour. When she weighed her this morning, she was over three pounds! She is three weeks old today - which means that her adjusted age is 31 weeks and 2 days (she's not even supposed to be born for 9 more weeks). All she needs to do now is grow.

Fiona's Day

We're going to bury Fiona today.

It won't be a large service. Just Patrick and me and a priest from our parish at the grave site for a little prayer service.

I'm not looking forward to it, and yet, I'm glad we get to do something to memorialize her. A song I was listening to yesterday had a line in it that reminded me of Fiona: "Beautiful setting sun, though I can no longer see you, I see the light your daily death has given to the stars." Fiona lived just long enough to save Brigid's life in utero and is watching over her now, I have no doubt.

We had some prayer cards made with a poem that a friend sent to me after Fiona died. If you're interested in having one, please let me know. The back of the card says this:

It is not growing like a tree
In bulk, doth make man better be,
Or standing long an oak, three hundred year,
To fall a log at last, dry, bald, and sere:
A lily of a day
Is fairer far in May
Although it fall and die that night;
It was the plant and flower of light.
In small proportions we just beauties see,
And in short measures life may perfect be.
-Ben Jonson

In loving memory of
Fiona Jane Tully
Welcomed into the arms of Jesus on
March 16, 2011
and into the arms of her Mommy and Daddy on
May 8, 2011

No, thank you

There are certain things a mommy should never have to do.

At the top of the list is picking out a tiny baby casket.

Just sayin'...