and the fight begins

When I finally got home I sat the kids down and spoke to them about their sister, asked them to pray for her and her healing. It was obvious I had been crying and there was no point in keeping it from them. We’re a family and if we were to be successful in fighting this thing it would be together.

I got online, to a group of amazing Catholic mamas and begged for prayers and was encouraged to find a second opinion and call my OB ASAP. So I did. I left a message that was disjointed and a bit frightened, but I did call her. Her nurse called right back, let me know they didn’t know what was going on but would find out and call me that evening. About that time my amazing husband came home from work, a couple of hours early. Brought me a Sonic water (my favorite drink, odd, I know, but it’s great! You should try it!!) and we sat in silence, together, just digesting it all.

When my OB called back I asked if it was possibly, at all, nothing. She was so kind and so apologetic. It was absolutely NOT nothing. Lucy’s heart was on the right side of her body and a mass of something was keeping it there. There was no chance for a prenatal operation. She did promise to get me in within 5-7 days, instead of the 3 weeks the specialist told me, to see if we couldn’t get a better picture and a diagnosis. I did ask her that it be a different doctor and that she make it damn clear that this baby, this little girl in my womb, was mine and that I was willing to go to the moon to help her. She was my precious child and she was worth saving. Period. Every doctor that interacted with me was to know this single fact. I will fight for my baby. She promised. She said “pray it’s not CDH.”

We were in shock. There was something wrong with our little one, but we weren’t going to know what for at least a few days. We were praying, we begged everyone we know to pray as well. We talked to friends and family and just tried to process what was going on. Eventually I got to a point where I could speak about it without tears taking over. We were doing our best to be as positive as possible. My facebook post on that day was:
“September 18, 2014
Please, keep our sweet little girl, Lucy, in your prayers. Today, during a routine growth check ultrasound it was discovered that our littlest one has what is likely one of two abnormalities, either congenital diaphragmatic hernia or a bronchogenic cyst. Both are serious. Either one will require a NICU stay and could be/are effecting lung development. Her heart seems to have been effected as well, being pushed to the right instead of where it should be. We do not yet know which one it is. The cyst is less serious, and we will be having another ultrasound soon to try to diagnose exactly what it is. Until then, please, please pray for our little Lucy. Pray that she is not dealing with the hernia, or even better, pray she is completely healed.”

and, just like that, our fight began. Our research started and our world turned a bit topsy turvy.

The ride home

I have spent a great deal of my life working to convince myself and the world that I am a strong and capable woman.  “I CAN DO IT” has been my mantra since I was a very small girl.  I didn’t want help and I didn’t want interference.  It’s a thing. I can’t be weak.  It’s a stupid thing, but it’s a thing.

When I got into the van and started pulling away from the hospital where our appointments were, I was shaking, visibly and hard.  I asked my son to sit in the way back.  If I was going to freak out and cry he didn’t need to see it.  I got closer to the street from the parking lot and my mind was racing with what to do next.  Should I call my husband?  Does he need to know now, or should I wait until he gets home from work?  Is this an emergency?  Am I over reacting?  What should I do?  Do I call people?  Who?

By the time I had pulled into the street I realized I could do nothing.  My baby could die.  All I could think was that my baby could die.  I knew nothing else.  Not even the name of this horrible dragon that was attacking my family.  I only knew it was there and it could take my baby.  I started sobbing and turned the corner, the wrong way because I was disoriented.  I couldn’t figure out how to get out of downtown OKC.  I decided to call my husband because I found myself emotionally and physically lost.  I called him and just vomited out the words of what happened.  All of it.  Inbetween sobs.  Then I started to apologize for calling while he was at work, but I didn’t know what else to do, I was so lost I couldn’t find my way back to the highway to get home.

I’ve never been that lost before.  I’ve never not known how to go forward in my life.  Not to that extent.

My amazing husband calmed me down, talked me off of my ledge and walked me through how to get to the highway.  Then he kept me on the phone until I was in the town we live in.  He didn’t want to hang up until he knew I’d be safe and okay.  I hung up with him and called my best friend. I didn’t know what else to do and I didn’t want to be alone with my 11 year old in the van to hear me cry.  She listened as I told her the whole story.  She stopped her day so I could have an ear to listen and promised her prayers when it was time to hang up.  I was nearly home when I called my mom.  I told her what was going on and she promised to pray for our baby girl.  She didn’t know her name, no one did, we’ve not announced names in years.  There was too much drama in name picking so we decided to not announce anything anymore, until it was on the birth certificate.  It was a surpise we kind of liked having.  Anyway, she promised to pray for our little girl and I replied “Her name is Lucy.  Pray for Lucy.”

We had reached the point where surprise was going to help no one.  Suddenly it became very important for everyone I knew to know her name.  If she wasn’t going to live long once she was born we were damn sure going to be calling her by name for as long as we could.

She is my little girl.  Her name is Lucy.

She could die

I stopped writing about this whole thing because I was stuck on those words again.  They’re so difficult to read, let alone write.  Even as I sit here with spit up all over me and a beautiful little girl snoozing in the next room.  So. Difficult. to. read.

He insisted that there were a number of things that could be wrong, he didn’t think Downs was one of them, but so many others, all pointing to “incompatible with life”.  I tried to ask what either of those diagnoses were, I had never heard of either in my life, but he just wouldn’t calm down enough to hear or answer.  He did say how unfortunate it was that I was already at 29 weeks, if we would have caught this at the 18 week ultrasound there would have been a few more choices available to me, but as late as it was, my choices were greatly limited.  He insisted, again, that we needed an amnio.  I asked him when he would think it would be a good time to do one and he, excitedly said “today!  This afternoon!  NOW!” I asked about the risks of the procedure (there are always risks, don’t let them tell you there aren’t) and he said that while there was a risk of premature labor and delivery, we would at least have information available to us.


I asked him, “what is to be gained by doing an amnio today?” and his only answer was “information.  For delivery”

I pushed it further at that point (because, Oh. HELL no.) and asked, “Are you certain there is something wrong with my baby??”


“So you know there is something wrong with my baby and you want me to risk premature delivery, which will further complicate anything that might already be going on, so you can have INFORMATION??????”  I was going to have none of that.  Leave my baby alone.  If there was something wrong and she was okay right now, just leave her alone.  Go. Away.  He asked if I was refusing the immediate amnio and I replied that yes, I was in fact, refusing it.  That’s when he just said “Okay.  Sounds good.  We’re not sure which diagnosis it is.  BOTH are serious, we hope it’s a cyst and NOT CDH.  Pray it’s not CDH.  We’ll do another ultrasound in three weeks and check again for a clearer picture and hopefully by then we’ll be able to see what it is.”

And then he left.  Just like that.  Just walked out the door.

“I think your baby might die.  See you later”

I just stared at the tech.  Blinking.  She asked if I had any questions and I said “I don’t know.  I don’t think so, I, I, I ummmm, what did he say it might be?  Can you write it down?  I don’t know…”  She kindly wrote down the two diagnoses on a yellow post it note and walked me to the check out desk.  She let me know that the patient coordinator will be calling soon to coordinate the rest of our doctor appointments.  She asked if I was okay (ummmm, NO!) and then walked away.  I checked out in a daze and managed to get my son and myself to the valet parking to pick up our van.  I just sat there, waiting for our vehicle, absently rubbing my swollen belly, my mind racing with the possibilites and problems that we might be facing.  I might never get to hold my little girl that I had prayed so hard for, and looked so forward to meeting.  My arms could well be empty.  It was just a nothing, routine scan.

A life-changing, routine scan.

This is where things get complicated.

This is where things get complicated.  I had to break out my calendar to even try to write it out, everything just swims together in my mind, crashing like waves against each other.  I spent a good amount of time not getting emotional about it at all, reactions like that just aren’t something I do often.  I don’t handle other people’s reactions to my reactions very well either, however, just thinking about writing this next bit makes my stomach turn and my eyes leak.  Sometimes Mary Poppins is obvious, you can see the perfection, other times Mary Poppins doesn’t look quite like herself and you’ve got to look hard to see just how perfect imperfection can be.

I took my glucose tolerance test in August.  I failed, again.  It’s a thing.  So, gestational diabetes, again.  I was bummed because it’s a pain in the rear, but I figured I could manage it just fine, I’m a big girl and it’s not gonna kill me.  This is the only complication of pregnancy I ever have, so whatever, it’s all fine.  I started sticking myself several times a day and watching my sugars, impressed with how well I was doing, really.  My next doctor’s appointment was spent discussing management and the upcoming “old lady” ultrasound.  I couldn’t wait to have it again, it’s always such a joy to see the baby in there.  It’s such a great comfort, knowing everything is fine and all is well.

On September 18th I went in for the ultrasound, I just had my 11 yo aspergers son with me, my husband decided not to tag along this time, no biggie, just a routine growth scan, no need to take more time off of work when we were saving up the time for when the baby arrived.  I remember watching the scan on the large TV on the wall and seeing the tech silently measuring her heart over, and over.  I remember a large black mass (it looked, to me, to be the same size as her heart) next to her heart that the tech was also measuring repeatedly.  We talked about how many kids I had, their ages, that this was the first girl in 17 years and how excited we were to meet her soon.  I was 29 weeks pregnant.  We only had 10 or so weeks left and were quite excited about delivery day.  After quite a lot of measurements the ultrasound tech changed out her wand for a 3D wand and looked for, and took several pictures of, the baby’s sweet face.  She had such chubby cheeks and the cutest button nose.  Then, she just got up and walked out.  She said she would be back with the doc in a bit (again, a perinatologist was necessary because I’m old) and left.

She forgot to hand me my pictures.

My son and I sat in the dimly lit room, quietly waiting for the doc to get done with his other patients.  He was working on school work (never stop schooling, right? LOL) and I was busy on my phone.  Fifteen minutes later she came in, flustered about, apologized that the doc was taking so long, and assured me he’d be in soon.  She gave me my pictures after I asked about them, apologizing for being so absent minded.

She kept apologizing.

Fifteen more minutes passed.  I was so ready to go home, the appointment had started late (not uncommon for that clinic, so I was a bit prepared) and instead of a quick in and out we were waiting, and waiting, and waiting.  I was just annoyed that we hadn’t left yet, I had no idea how miniscule that inconvience would feel so very shortly.

Finally another ultrasound tech came in.  She was again apologetic that the doc was taking a bit and glooped up my belly for yet another scan, “just to recheck some things”.  As she was scanning, focusing on our little girl’s heart, the doc came in.  Enthusiastic barely begins to describe this man.  He was like a meterologist on tornado day, he stormed into the room, rushed to the large monitor on the wall and started waving his arms around, very nearly jumping up and down.  “THIS!  THIS!! VISUALIZE THIS!!  WHAT IS THIS????  WHAT ARE WE LOOKING AT???” To say he was alarming is an understatement.  My breath was gone.  He came over to me and asked of the tech, repeatedly, “Orient me, ORIENT ME!!  I can’t tell what I’m looking atthat’stheheart?Whereisthestomach,whatsidearewelookingatORIENT ME!!” He had me roll to one side, jostle my belly, roll to the other side and jostle again, each time hoping for a different view.  Finally he looked at me and said “There is something wrong with your baby.  Her heart is on the right side of her body, there is a huge mass pushing it over, I don’t know what that mass is, it could be two different things:  A bronchogenic cyst or a Congential Diaphragmatic Hernia.  If it’s the hernia there are likely other abnormalities as well and it’s entirely likely that your baby is not compatible with life outside the womb.  We need to do an amnio right now to see what else we’re looking at.  She could die.”

It’s a girl (FINALLY!!!)

I had an awesome post all typed up.  It’s gone.  Evidently I didn’t, in fact, save it to drafts.

To continue on Lucy’s story…

In July (while submerged into getting our oldest ready for the convent) we had our “big” ultrasound.  As is our tradition, we brought all the kids with us.  It’s nice to share the journey with them and makes them feel more involved in getting ready for their new sibling, and really?  Who doesn’t like to see a sweet little baby swimming around in there?

We were all fully expecting to be told we were, in fact, having another boy.  It’s what we did.  God gave us two amazing daughters, early on, and He was wanting us to raise sons now.  We’d gotten used to the idea.  The volume in my home is loud, to say the least, and not a little messy at times but we’ve come to terms with that and just figured on welcoming another boy into the mix.  People kept asking what we were hoping for (of course we always said “healthy”) and we would respond with “doesn’t matter, either way we’ll probably have a boy!” and give a bit of a giggle.

Imagine our surprise when the ultrasound tech told us it was a girl.  I didn’t even know what she was looking at, completely oblivious.  When she pointed it out to me like I was an idiot I just looked at her and said “check it again, I don’t believe it.”  She, very kindly, did, and crazy enough, it was still a girl!!  I looked at my husband with tears in my eyes and said “ummm, I think you’re broken!!”  Everyone wanted to know what her name was, but the thing is, we don’t share that information until it’s on the birth certificate, period.  It’s another weird family thing we do (mostly because I just don’t need other people’s opinions on the matter) and we’re fairly adamant about it.  All I wanted to do was rush to the store and start buying every single pink, ruffly thing in existence.  We did have to finish the ultrasound first, so I laid there with goop on my belly watching our little girl (!!!!) swimming around and crying tears of pure joy.  Everything looked great: heads, legs, arms, belly.  We couldn’t get a good shot of fingers or toes, she had her hands and feet up by her face, and for some reason we couldn’t get a great shot of her heart, even with me turning on my side and trying a different angle.  We all wrote it off as just baby being in a wonky position and didn’t think anything else of it.

The perinatologist came in to talk to us after the ultrasound (I had to have one because I’m old) and let us know all was well and he just wanted to see me in a couple of months for a follow-up growth scan, just to make sure my old-lady body was able to nourish and maintain a pregnancy like it could fifteen years ago.  I agreed, happy to get another peak at our newest little girl, and set up the appointment.

I look back on this particular time and marvel at how simple and easy it seemed and how incredibly confident I was that the baby was fine.  Practically Perfect in Every Way.  Goodness, to hear me talk,  I was carrying Mary Poppins herself.  I was a bit irritated when they ended up scheduling me for two ultrasounds, instead of the one.  Why would they do that?  There’s nothing wrong, after all, I have healthy babies, always have.  She’s fine.  I’m fine.  It’s all good.  I managed to talk my way out of one the ultrasounds and just kept the one in September.  There was no reason I could even begin to fathom that would make it necessary to be required to peak at her more than that and I’m a busy mama, lots to do and people to take care of.  Everything was fine.  Then, I just concentrated on planning a short vacation, keeping hydrated (summer in Oklahoma after all) and getting our oldest completely ready for the convent.  Sprinkled in there were little shopping trips for various baby things, little outfits with sweaters and jeans, pink and lace and ribbons, all the good stuff.  Life was perfect and amazing and busy and I was oblivious to the fact that our beautiful little girl was beginning a battle for her life.

“…A very good place to start…”

So, since the best place to begin is usually the beginning, I guess I’ll start there.  The beginning of Lucy.

I had attempted to make several appointments with my ob/gyn because my cycles were flipping out.  100 days, 10 days, 38 days and so on.  Clearly something wasn’t right and after taking enough pregnancy tests to have warranted the purchase of a large amount of stock in the company, all negative, I decided it was time for professional involvement.  I love my doctor, she’s pretty amazing and, awesomely enough, likes my husband and myself too.  I imagine we could go out to dinner and enjoy some awesome conversation over a bottle of wine.  Anyway, I came to her looking for advice on what in the world could be going on with my wonky body.  I knew I was fat, but didn’t think that was the issue, it never has been (and fat isn’t new).  I had horrible thoughts running through my head about cancer and all kinds of ugly things, but decided to wait until I talked to her before I invested in a cemetery plot and gravestone.

The doctor and myself took a bit of my appointment time catching up and then discussed my cycles.  Clearly, so clearly, I just wasn’t ovulating.  We couldn’t think why, but a strong dose of progesterone to kick start a cycle might be just what my body needed to get itself back into normal operating condition.  She asked if I wanted another pregnancy test and I said no, I had taken yet another one that morning, just to be sure, before I came for my appointment and it was negative, just like the rest of them had been for nearly a year.  I left with my prescription in hand and decided I’d get around to taking it eventually, if my body didn’t jump into normal on it’s own (don’t ask.  I have no idea.  Seriously, it wasn’t being “normal” yet, why would I think??  Yeah.  I have no idea, LOL!).

The next few days were extraordinarily busy, I never got around to picking up my script.  Finally my husband asked if I was ever going to take it.  He was right, I needed to get it and get started on it so I promised to get it picked up the next day, and as promised managed to make it to the pharmacy and pick it up.  It sat on the bathroom counter for a day or two, I just had such a strong check in my spirit, I couldn’t take it.  God was nudging me toward another pregnancy test, I just didn’t want to take it.  It was going to be negative, we didn’t need another baby right now, I didn’t have the time to wrestle another boy, I was tired.  Pregnancy is difficult and painful and I just didn’t have it left in me at the moment.  I still didn’t take that pill.  I took a test instead.

It was positive.

Shock is so mild a word.  I called my doctor’s office and asked them what the heck I was supposed to do now, I was NOT supposed to be pregnant.  I didn’t trust the test.  The nurse had me come in for blood tests, for three weeks I came in and had levels checked.  I was, in fact, pregnant, and the baby was growing strong.  When I finally got to see my doc (dh came with me, we really were in shock!) she cried tears of joy which was such a welcome reaction.  We weren’t ready to let the world in on our little secret, I just couldn’t take the ugliness.  We had to have joy.

We decided to tell our kiddos at Easter.  We put an egg in each basket with a little plastic baby in it and a tag saying “coming Nov 2014”.  It was such a sweet way to let them know we were getting a new member of the family, we really enjoyed sharing it with them.  We were a bit worried that the news would keep our oldest from entering a convent in the fall as she had started planning to do, but she assured us that she could be just as happy to have a new sibling there as at home and she would be okay.  It’s an odd thing to be pregnant and have an adult child at the same time.  So many things to balance, such different ways to parent each of them.  There are no rules or guides, you just muddle through to the best of your ability.

We laughed, then, at how much God wanted our little peanut to be here, His voice was so loud to me, when I thought about taking that medication.  We were so proud of ourselves that we had actually listened to His voice, and our sweet little one was still in my womb, safe and growing.


So my resolution this year was to write more.  I’m happy when I write, it fills something that soothes and comforts, not to mention the past year we’ve had begs to be written down, not for anyone but myself and my family, but it must be writtten.

It’s February.  So, yeah, you can see how good I am at resolutions (I’ve resolved to lose weight for years and years, I’m still fat.) but I’m trying.

The past year saw my oldest attend her first year of college, apply, get accepted to and begin religious life at the Dominican Sisters of Saint Cecelia, come home from said convent and restart life here, changing a college major and life direction.  Religious life is not completely written off, but it’s on the back burner.

The past year saw my boys grow and change so much that now one of them is taller than I am and his voice so changed as to be nearly foreign to my ears.  They are all big brothers as well.  We got pregnant, unexpectedly, in March as well.  That was the beginning of a season I would never have imagined, that tested my faith in ways I’ve not experienced before.  I need to start there.  My blog will become a bit of a chronology of our experiences with Lucy.  I need to get it out, write it out, sort it out.  Eventually we’ll be done with that and I can write of other things, but for now, I’m writing about Lucy.  About her story and our miracle.


Today, I’ve got kids that need teaching and feeding and loving.