A few of my favorite things...

It's hard to believe Christmas is tomorrow.

I'm usually giddy with excitement by now, but this year has been very hard.  Yesterday marked six months since our little Brigid died, and we're missing her so much.  I am so excited for Christmas, only because I love seeing the look on the boys' faces when they come down that morning.  But I'm just not feeling it so much on the inside.

Still, there are things around us that make me happy when I see them.  These are a few of them:

I'm pretty crazy about paper snowflakes.  Jack is, too.  He decided that he wanted to make one for Santa, since the big guy doesn't really get a lot of presents for Christmas besides the ones from the elves and Mrs. Claus.  So we folded the paper and he carefully cut out a snowflake for him to put on his Christmas tree, writing "To Santa from Jack" on the back.

I just love our Christmas stockings.  Five of them just fit onto our railing and I remember thinking that we needed a new house if we were to add one more.  Or two more.  But now there are still just five.  And that one paper one that Jack made at school and added on the end for Blarney.  But there, over the door.  See that?  That's something that Patrick and I got in Ireland when we got engaged.  That's St. Brigid's cross.  It's like she's in the stocking picture, but in a different way.  When I look down the hallway and see that, it makes me happy.

Sort of.

Finally, there is a house nearby that has several of these Moravian stars hanging outside.  Some of them are over eight feet tall.  They're just beautiful and ethereal.  I love getting the boys in their jammies after dinner one night, giving them some sippy cups of hot chocolate, and driving around to look at Christmas lights.  This house is my favorite.  

And, of course, it's hard not to smile when I look at these three, even if they have been in off-the-wall mode for the past few weeks because Christmas is coming.

For the first time in years, I've gotten all of my wrapping done before Christmas Eve, which means that we can have a relaxing day together today and possibly even get to bed at a decent hour.

And then, in the morning we get to tell the boys that we're going to see this guy:

I can't stinking wait!

photo source:  http://www.americanconsumernews.com/2009/01/disney-announces-military-travel-promotion-for-2009.html

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/

Cards from strangers

Something has been happening to us lately that is blowing me away.

We've been getting cards from strangers.

People we've never met have been sending sympathy cards to us, with notes inside about how they were affected by Brigid's story.  I find this amazing.  I'm so grateful for people reaching out to us to tell us how they were praying for us in the midst of our trial, and that they are still praying for us now as we heal from our loss.  A nurse who cared for me in the hospital called me yesterday because she had just learned what happened.  I was able to share with her that God has been so good to us, helping us to heal by enjoying our time together as a family in a way that we never have before.  I shared the example God gave me for Brigid's eulogy and she was encouraged and asked if she could share it with others who are hurting from a loss.

But perhaps the most amazing thing to me is to see how God is carrying out the example, using the experience to touch more people than we ever imagined, just as the birthday surprise would have blessed more people than the chocolate chips alone would have blessed my son. 

I miss Brigid terribly.  She was such a sweet little girl, and I felt like I was really just getting to know her personality and her likes and dislikes.  It took me longer to learn these things about her since she didn't live with me, but a mother learns to read her children, and I felt like I was just learning to read her before she died.  I knew which songs she responded to when I sang to her.  I always said the same thing to her when I bent down to kiss her and she would open her eyes and often give a little smile.  It made me feel like she knew it was me.  I wish I could experience that again, even if it was still in the NICU.   Her due date is not for another ten days, but she's already been born and died.  That makes me so sad. 

But I know that she is with Jesus and with her sister.  And God is so good to show us, through cards from strangers, that her little life affected more people than we might ever know.

A new normal

It has been a week since the last post, and a lot has changed.

Our hearts have healed so much.  It's like God kept bringing the truth that He showed me back to mind and reminding me to keep an eternal perspective.  Our life is like a blip in light of eternity. 

Sure, we still cry.  I look at photos of Brigid every single day and long to be able to hold her again, to smell her smell and feel her soft skin and kiss her little head.  My heart hurts to think of the pain that her tiny body endured during her short life - needles and IVs and tubes in the throat and nose and a surgery and probably a hundred heel pricks to draw blood.  It's not supposed to be like that.  That's scary and painful and it makes me sad to think of her going through that alone.  It's supposed to be cuddles and warm milk and soft blankets and kisses.  That's what babies are usually greeted with shortly after they come screaming into this world.  But not our Brigid.  And yet, she hardly ever cried.  It was her normal.  It's all she knew.  I wish it could have been different.  But that wasn't God's plan, and I know her reward is great right now, and she is not feeling any discomfort at all.

And this week, I've been able to devote myself to the boys in a way I never have before.  It's the same amount of time with them that I've always had, but it's so much fuller now.  I appreciate it so much more.  I feel engaged with them in a way that I didn't before this experience.  PJ especially has been struggling with Brigid's death and having a hard time understanding what it means.  He has been fearful of being alone and clingy with me, probably because I've had to spend so much time away from him in the past few months - sometimes he'd wake up and I'd be in the hospital and I know that was scary for him, and I have to keep reassuring him that that time is over now and I'm not going away again. I think he's finally understanding that.  I love that I can devote my full attention to them right now, playing with them and being with them in a way that's not just being in the same room together doing our own things, but really doing what they want much of the time - being silly or building train tracks or reading books.  Paying attention to them.  Because that's what it's my privilege to do right now as I am able to stay home with them for these short and fleeting years until they're all in school. Patrick and and I both feel like we have so much more patience with them and we all feel that time together as a family is so much more meaningful because of the time we spent apart.

So that's our new normal.  It's funny that on the outside, it looks the same as the old normal.  We're all the same people.  But on the inside, we're all so different now.

And that's a good thing.

I'm so grateful for all the prayers and cards and kind wishes you've had for us.  I have no doubt that these prayers have helped to carry us through and bring peace and comfort to our hearts. 

Thank you!

Brigid's day

Thursday was Brigid's funeral.

Since then, I have been swallowed up in a tsunami of grief that has left me barely able to function. My mind feels like it is still anchored back in the NICU on the night that she died, and my body has been stretched from that point forward to now, like a rubber band that wants to snap back to that point. To relive those moments before she died to see what we could have done differently. I feel fragile and disconnected and so very sad.

I took a few of the photos I had of Brigid and pieced them together into a sketch of what she may have looked like without all her tubes and tape. When I look at it, it makes me smile. It's exactly what she would have looked like: a bit of her brothers and a bit of her own person rolled into one.

Somehow, I gave her eulogy. It was as if I were a robot. I don't know how I did it, but I do believe I was supposed to, and so I did.

It said this:

As I knelt in prayer at church this past Sunday, I pondered Brigid’s death, as I have done every second of each day since it happened.

Specifically, I thought about God as our Father and the giver of every good and perfect gift, who tells us that if we as parents know how to give good gifts to our children, how much more will he give good gifts to us if we ask him.

And I wondered: What about this? How is this a good gift?

I’ve told our boys that just because Brigid died, it does not mean that God didn’t hear our daily prayers for her to grow big and strong and come home to live with us. “Sometimes,” I told them, “God tells us no just like sometimes Mommy tells you no when you ask for things.” They accepted that explanation…but I wasn’t so sure I did.

We all tell our children no when there are things that they want that are not good for them, but as a mother, I tried to imagine the circumstances under which I could possibly tell my children no for something that would break their hearts as much as Brigid’s death has broken ours. Why would I tell them no for something that would make them happy? What would have been the harm in allowing us to bring our healthy daughter home to live with our family? Especially after we’d already lost her sister.

I racked my brain for an example.

It came. It involved chocolate. And I realized that it all has to do with perspective.

I imagined myself baking in my kitchen. I love to make special things for my family, and I imagined I was making an extra special dessert treat for the birthday party of one of my boys. Only he didn’t know I was doing it for him.

He comes into the kitchen where I am standing and asks if he can have a few of the chocolate chips that are on the counter. Because I need to use them for the dessert, I tell him no.

Being the young child he is, he is devastated. “Please, please, please?” he pleads. “Trust me,” I say. “No.”

He falls to the floor crying and kicking and screaming. But I do not change my answer. Instead, I lovingly pick him up, give him a hug, and tell him to go and let me work. He doesn’t know it, but within a short time, I’ll have used the chocolate chips to create something extra special for his party, and I know that he will love it. This is why I can be a loving parent and yet be unmoved by his pleas.

And then I thought about this example in terms of my perspective on our situation.

To a young child, my denying him the treat that he wanted was devastating. But as his mother, I knew I had a plan for it that was far better. I knew his tears would be short-lived, but that he’d appreciate the final product much more than the chips by themselves.

To him, the few hours until the party seemed like an eternity. But to me, it was just a brief wait that was worthwhile for the celebration that was to come.

The small chocolate chips would have been a treat for him and they would have made him happy, but the special dessert would serve many more people and benefit him as well as others.

I have to think that our Father, with his infinite knowledge, sees our situation in much the same way that I, as a mother, see things in relation to our boys.

Our wait to see Brigid and Fiona again is nothing more to him than a little boy’s wait for his birthday celebration. But oh, the celebrating will be so much greater. The pain of being denied our request feels profound and deep; our tears will flow for months instead of minutes. But to our Father, this is but a short-lived trial. Our girls would have enriched and blessed our family had we been able to bring them home to live with us, but incorporated into his plan, they have been used to affect so many others.

Many of you might never have known about our twin girls were this not the plan. And I’m pretty certain that none of us will ever be the same again. We prayed and we rejoiced and we prayed and we cried. Our prayers brought us to our knees in the middle of the night. They drew us in close to the God who was in control of this situation from the very start. They came from Australia and China and Hungary and Canada and Scotland. They came from people who were prayer warriors and from people who had never prayed before. They brought glory to God because they made us acknowledge the frailty and wonder of life and realize that there is a power greater than us at work.

To know that our girls may have been used as part of God’s plan for someone else is humbling. Our faith has not been shaken by their death. Rather, it has been toned and stretched and strengthened. We have been brought to the end of ourselves and found that He still gave us the strength to go on. Our prayers for Fiona and for Brigid were really for our benefit too. The act of praying for them tested us and helped us to grow stronger. And though God chose to answer our prayers with “no,” our prayers were not in vain.

I believe it with every fiber of my being, but it is hard to go on.

Here is the slide show we played at her viewing.



Somehow, we're putting one foot in front of the other. I have never known sorrow like this before. But our God is good and he will walk with us through this valley.

Services for Brigid

Thank you all for your kind words and thoughts for us over the past few days. We are so very grateful.

The temptation during a time like this is to ask why? Why did this happen? Why did God do this? Why me? The fact is, this is life on this imperfect earth. Many people before us have gone through similar tragedies and worse, and many people after us will go through them. The better question is why not me?

This is where the rubber of our faith meets the road of life. Sure, it is unbelievably painful. We feel weak. We are beside ourselves. We are undone. How could she have pulled through heart surgery only to be taken by a fluke infection? There are many questions. But these things did not surprise our God. He is, and always has been, in control of this situation. He is good, he loves us, and he has not abandoned us. If we are to have free will, we have to live with sin and death and suffering on this earth - but only for a while. A day will come when "He will wipe every tear from their eyes. There will be no more death or mourning or crying or pain."

We are anxious for that day to come soon.

Our sweet little girl touched many hearts and lives over the course of her very short life. If anyone would like to attend services for Brigid, there will be a viewing/memorial service on Wednesday evening, June 29 from 6 to 8 p.m. at Gravenor's Funeral Home in Ephrata, Pa. There will also be a funeral Mass on Thursday, June 30 at 11 a.m. at Our Mother of Perpetual Help church in Ephrata, Pa. All who would like to come are welcome.

A sort of homecoming

It's not the homecoming we'd anticipated.

We had hoped that sometime in the next few weeks, we'd be bringing our baby girl home to live in our house and play with her big brothers.

We'd hoped for some pink things and baby dolls and maybe even a few frilly dresses.

After she had a hard time yesterday, the doctors decided to test Brigid for an infection and found that she was critically ill from a bacteria that she likely developed from being on the ventilator. Her blood cultures showed that she was septic - the infection had taken over her bloodstream - and her little body fought it as well as it could. The doctors, recognizing the severity of the situation, called Patrick and me and told us to come to the hospital right away. She was having such a hard time, but we got to be with her and kiss her and sing to her. The bacteria was vicious and fast-moving, and it only took about 12 hours from the time she started acting lethargic until her body could fight no longer. At about 11:30 last night, Brigid went to be with Jesus.

We thought our homecoming would be a wonderful ending to a long and difficult road, but it would just have been continuing the race that is life on this earth for our girl. Instead, she's already won the race and received the prize. Brigid's homecoming was the final homecoming - the one where she gets to live in the mansions and walk on streets of gold and worship at the throne of God and see him face to face.

We are so honored to have been your parents, sweet baby Brigid. I'd been under the impression that I was holding your hand to help you through this difficult time, but now I realize that you were actually helping me by holding mine. Thank you so much. You are the strongest person I know, and I can't wait to spend eternity with you and Fiona.

More breathing issues

I went in today to find Brigid having more breathing issues. Her oxygen saturations were low, despite being on a high oxygen concentration with the ventilator. I found out at rounds that she has a collapse (atelectasis) of the top part of her right lung, so we went from one airway issue to another.

She was very lethargic and a little pale, not her usual feisty self, but they ruled out any infection and feel this could just be secondary to her surgery. Chest PT, frequent suctioning, and turning her on her left side seems to be helping a little. She will get another chest x-ray later today to see if it has opened up some.

How many x-rays can a tiny baby get before she starts glowing, I wonder. I think she's averaged one per day so far. That's way more than I've had in my 37 years of life.

This road we're on is such a long one and we are getting weary. At least I am. It's been a long six weeks so far, and it's hard to think that we're still six weeks away from her due date. So we're only at the halfway point. I'm hopeful that seeing some growth and improvement is what will help get us through the last weeks.

Not so much

Our strong girl did a good job with breathing on her own for a little while today. After about an hour, though, it became evident that her floppy airway was not allowing her to vent off her carbon dioxide and she had to be reintubated. They will likely do another bronchoscopy to determine whether it's a floppiness that she will be able to outgrow soon, or if it's one that is too severe and will require a tracheostomy before she comes home.

I was excited, though, to finally see her whole face! The nurse was even kind enough to use clear tape for her NJ tube.

I can definitely see the resemblance to her brothers! She is just the most precious little girl.

Extubation

Brigid is back to having a bit of a hard time with her breathing. When she is awake and alert, they find that she works hard at fighting against the tube. She is a strong girl, but in this case, strong is a bad thing. She often displaces the tube, and it tends to cause her to have a vagal response or to have trouble oxygenating or venting off her CO2.

Again.

She has lost weight over the past few days, I think. They don't weigh her daily in the PICU and that's where she's been since her surgery, but today she looked skinnier to me. They mentioned that she may be using her calories in struggling with her breathing, either during the CPAP trials or if she's just not ventilating well. So now, after several different CPAP trials (some successful, some not), they think the best thing would be to try removing the tube altogether and seeing how she does without that being a factor.

This is very scary to me, but I'm curious about it as well. As much as the positive pressure (PEEP) from the tube has been helping to keep her malacia open, is the tube itself causing blockages? Has it now become more of a hindrance than a help? And if so, can they give her the PEEP she may need to overcome the floppiness in her airway through only the nasal cannula?

These questions and more will be answered tomorrow morning at around 11 a.m. Please say some prayers that it would go well and she'd be able to be off the ventilator completely.

Plus, I'm kind of excited to see her upper lip.

Improvement

I got to spend a little bit of time with a very awake and alert baby girl today,



and boy, did it feel good!

Brigid has been doing well since her surgery. Her breathing has improved so very much. She is so easy to ventilate, in fact, that they have started doing CPAP trials with her ventilator to give her practice breathing on her own.

To witness a tiny infant, who is not even supposed to be born for seven more weeks, triggering her own breaths for almost an hour is nothing short of miraculous. We are indeed fearfully and wonderfully made!

Success!

Thank you so much for keeping our baby girl in your prayers yesterday!

Her surgery took place in the morning and was a success. Her doctor came to speak with us in the pediatric waiting room as soon as it was done - before she even got back to her room - and told us just how it went, and how great she did.

We were able to go back and see her, which was a little upsetting as she was on her back with her arms spread out and held down to the bed. They needed to observe her and keep her from grabbing onto the drainage tube that has to stay in her side for a few days following the surgery. As a mommy, it was hard to see, knowing that she really just wanted to be curled up and swaddled.

I could tell right away, though, that the surgery had made a difference when a nurse came and repositioned her ventilator tube. Its placement had been so precarious prior to the surgery because of the constriction by the double arch. If she pulled her head back and the tube shifted, even just slightly above where the constriction was, it cut down her oxygen supply and her alarm would start beeping. After the surgery, though, the nurse completely bent the tube at a 90 degree angle to reposition it. I watched her do it and then instinctively whipped my head around to check her monitors, anticipating that her oxygen levels would plummet. They didn't budge. This was such a huge indicator of how successful the surgery was.

When we met with the doctor on Saturday afternoon, he gave us several things - diagrams of what a normal aortic arch looks like, illustrations of what Brigid's arch looks like and what the surgery will do, and some of her MRI pictures that show how much the arch is constricting her trachea. These were fascinating to look at. The images are cross-sections of her body, as if you were looking up through her feet.

In this one, the yellow arrow is pointing at what her trachea looks like above the point where the double arch was constricting it:
This one shows her trachea at the constriction point. Notice the huge difference in the size of the opening:

And finally, this is her trachea, open once more, just below the constriction point and as it branches into two to go down to her lungs:


It's so amazing to look at these and to see exactly what is going on, and how it has affected her physically. Usually, doctors don't insert the ventilator tubes as low as hers is, but if the tube was above this constriction, she didn't get enough oxygen and more importantly in her case, couldn't get rid of her carbon dioxide. Below this point is the carina, right between where the branching occurs, and if the tube touched that, it caused a vagal response that made her heart rate drop. There was probably less than a centimeter of wiggle room between the arch and the carina, and because she is so strong, she could easily move her head enough to cause the tube to displace and either touch her carina or to move back above the arch.

The fact that the tightrope walk that happened all day long finding just the right spot to prevent either of these things is no longer an issue is such a relief! Patrick called last night and I called this morning to check on her, and both times her nurse said she was doing great. She didn't have any incidents of bradycardia (dropping her heart rate), desaturation (dropping her oxygen levels) or increased CO2. It seems that the surgery has already made a significant difference and was a total answer to prayer!

The smoking gun

Yesterday Patrick and I met with the man who is going to do the surgery to repair Brigid's double aortic arch. He was one of the most kind, patient people I have ever spoken with, and he explained step by step how the surgery will be performed and what the expected outcome will be.

He believes that when it comes to Brigid's breathing troubles, this is the smoking gun, and he feels confident that it will significantly help her.

The prospect of heart surgery on our tiny girl is so very frightening, but after a weekend of more breathing difficulties and instability, the risks of delaying the surgery and impeding her airway for much longer are evident. We are anxious but hopeful.

I feel like we have been asking for so many prayers, but please pray that our baby girl does well during this surgery, which is scheduled for sometime tomorrow morning. We are hopeful that it will make a tremendous difference in her breathing and that she can finally just be able to grow and thrive, stable and comfortable, until she is big and healthy enough to come home with her family.

Ups and downs

I talked to several doctors yesterday. It's humbling to know that so many skilled and experienced doctors are considering Brigid's situation and weighing in on how best to treat her.

One doctor I spoke with was someone who'd talked to me after her MRI. He explained the surgery they'd need to perform to repair the double arch and said that "it's not a major surgery." Of course, when you're under four pounds, any surgery is major, but he meant that this is minimally invasive and one that they perform relatively frequently with minimal complications. I was feeling relieved by this when he went on to explain that because Brigid's trachea is so floppy, they may have to do a tracheal reconstructive surgery at the same time - a much more serious procedure.

This felt crushing. I asked him since the double arch surgery was the simpler of the two, could we not just do that one first and see if that helped her tracheomalacia before we did the other, more risky procedure. He didn't think that was a good option. Her attending physician had told me that a lot of different doctors were going to weigh in on the decision, considering the pros and cons and deciding on the best plan of action. I wasn't sure if they had already weighed in and this was their decision.

I was scared and cried on the drive home, praying that the doctors would reconsider.

Later in the afternoon, I got a phone call from her attending physician. She had talked to the doctor I spoke with, and also several other doctors that afternoon. I told her that I had some concerns about the surgery and asked if they could please consider just doing the double arch repair first to see if the malacia resolved. She said yes - that was what all of the other doctors had decided would be the best course of action (thank God!), and she put me on the phone with the cardiothoracic surgeon.

He was so kind and explained that despite her small size, he felt confident the procedure would not have any unexpected risks (of course, there are always risks), and that this is something that is often performed on infants. He said he would like to sit down with us and show us the MRI images, explaining exactly what they were going to do.

Then he said that in his opinion, this surgery would completely resolve Brigid's breathing issues. This was like music to my ears. He said that the malacia only exists in the exact spot that the vessels are in and he doesn't believe they are coincidental. I was so relieved.

We are meeting with him today to review the images and to discuss his findings and recommendations. As of today, Brigid is scheduled to have this surgery on Monday.

MRI update

Brigid had an MRI yesterday.

The doctors wanted to get a better look at what was going on with her trachea. It seems it's unusual for tracheomalacia to occur in just one small spot like hers does. Her attending physician ordered some echocardiograms (ultrasounds of her heart) to see if they could determine whether something was pressing on her trachea from the outside. She suspected maybe a vascular ring (a ring of blood vessels).

The echo gave them the idea that there was something there, but they could not tell exactly what. So yesterday they took her down to radiology to do an MRI. The procedure lasted very long, but she tolerated it beautifully. She is so tiny that they had to keep turning her at different angles to try to get just the right shot of what they were looking for.

But they finally got it, and what they believe they're seeing is a double aortic arch. It's something that we all have as developing embryos, but usually, parts of the arch eventually deteriorate and we're left with only one main aortic arch. The arch shape of the aorta, which is the artery that pumps blood from the heart to the rest of the body, normally only occurs on one side of the trachea and esophagus. In her case, it has formed two arches, one on either side of her trachea and esophagus, and they are pressing against her airway, causing the malacia.


It is very good to have an answer to what is happening. It's also very good to know that tracheal reconstructive surgery is not needed. It's scary, though, to think about a heart surgery to correct this abnormality. It's hard not to be sarcastic and cynical...I keep thinking things like, "Great, like she hasn't been through enough already." I just want my baby to be safe and healthy and normal. I want her to be able to grow and come home with us to live. I don't want her to have to go through anything else - she has been through so very much already.

And she's not even supposed to be born for seven more weeks. She should be safe and snug inside my belly, kicking around, sucking her thumb, having the hiccups. Instead, she's on a ventilator and has a tube up her nose and probes all over. She's poked and prodded and sedated and paralyzed and I have to ask somebody if I can come into her room to see her, if I can touch her, hold her, kiss her.

I think it's all wearing on me just a little bit, but God is good. He formed her in my womb, he loves her, and he knows about this double arch. It's not a surprise to him. I'm praying he will keep her safe during any procedures she needs to correct it.

Father-daughter time

Patrick got to hold his baby girl for the very first time today!

I'm pretty sure that look on her face is saying,"I'm going to have you wrapped right around my teeny, tiny finger."

I'm also pretty sure that the look on his face is saying,"Yes. Yes, you are."

Kangaroo care

I've been able to do some kangaroo care with Brigid the last few times I've held her. It's skin-to-skin holding where I get to hold her against my chest. She seems to respond so well to it. I can imagine it feels and sounds like being in the womb again, where she could hear my heartbeat and my voice sounded different. It's such a special time for me too.

She was opening her eyes and trying to lift up her head to look at me when we first started. I actually had to hold her head down so she didn't twist her ET tube. Then she fell asleep and was resting so comfortably. I love that she is holding on to my finger.

She is getting so big now. She was 3 lbs. 11 oz. at her last measurement - a full pound above her birth weight.

Some new photos

I forgot that I took a few photos on Monday when I went to visit. This pink teddy bear is one of two - something a friend gave us for the girls before our surgery. I put them away because they were hard to look at, but I thought it would be perfect to use as a comparison to watch how Brigid grows over time. The bear is about 7 inches long - like a beanie baby. Note that Brigid's legs are bent, so it's hard to see exactly how long she is by comparison, but you can get the idea.


I love her feet. They are exactly the length of my pinkie finger, which is relatively small. Her second toe is longer than her big toe. Mine is the same way. That makes me smile.