The Start of the Fight- Part 3

If you missed part one and part two of the Miracle Baby story, please read them so you’re up to speed.

While we were on the way home, Marius’ friend Dylan texted asking if he wanted to come over. Dylan’s wife, my friend, Brett, was also home early so we decided it’s be a good thing to go visit some friends. What sticks out the most of that visit, was the four of us talking about what the baby might be like. Both Dylan’s Mom and Sister (Who I know as well) work with Adults with Special Needs. We talked about how happy and purely loving life those with down syndrome were.

We could do this! We could be parents of a special needs baby! We would rock it!

The next morning a call came saying we had an appointment with the Pediatric Cardiologist for an echocardiogram four days later, on Monday. Marius needed to work, so Molly took Mac and My Mom came along with me. I was glad that we could tick another item off our list. It was a mental list of problems the baby had getting crossed off. It felt good, we were on the up and up. The ultrasound was half an hour long, and we looked at the screen the whole time which was much different than the first ultrasound. I loved seeing our little baby squiggling around. Seeing the heart pumping like it should be. But Dr. Sinclair also showed us the more concerning problems with the lungs and the cystic hyrgoma. He explained that he was only part time in Victoria, and the other part in Vancouver at Women’s and Children’s Hospital. He thought it would be a good idea if we went over there and he would set up the requisition forms getting that in motion.

Monday went and Tuesday brought packing and secrets. I didn’t tell anyone beyond immediate family (Brett and Dylan did know of course…) to know what was happening. It was too scary and unreal. We were moving, needing to be out of our place by noon on Saturday and into our new little rental cabin so suffice to say we were crazy busy. Tuesday afternoon brought a phone call from Women’s hospital asking us to be there on Thursday. At 9 am. Bring on the panic. There is no physical way to get there on a ferry that early, and going the night before was out of the question. We were lucky to have discount tickets for a seaplane available to us, but we still choked down about $300 in flights (versus taking a ferry we would have gotten a travel assistance pass from our Doctor and it would be free) to be able to get there and back in one day as to not cramp our moving schedule too much.

On Wednesday I went grocery shopping…I bought some cookies, mini greek yogurts, carrots, fruit and water bottles as well as magazines to take with us. It would be like a fun little date day! The seaplane is about a 25 minute ride over ocean the whole way and it’s gorgeous to watch out the windows. Cities can be stressful for us so we took the least stressful options the whole way, including a taxi instead of a bus ride. I checked in and was issued a blue card with my name, information, and referring doctors, then directed to the waiting room with a sheet saying where we needed to be at what time for our different appointments.

I read my magazines and ate my little greek yogurts. Worry? Who needs to worry! We were there for a check-up and a second opinion! I enjoyed spending time there with my Husband.

Our first appointment was an ultrasound. We were blessed to have an ultrasound tech as well as an obstetrician in training to be a perinatologist there so no secrets were needed. They told us exactly what was going on as it was going on. They switched into 3D and 4D to get a better idea of what was going on. A radiologists came and looked at the vocal cords to thyroid to bladder and everything in between. We could the vocal cords moving as the baby vocalized inside my womb. It was a pretty surreal thing to see.

The obstetrician asked if we wanted to know the sex. We kept it a surprise with Mac, but we’d already decided if we got an amniocentesis that we would find out the sex. Marius doubted the ultrasound, he said how will we really know?

Well let me tell you! When they got to the below the waist part, we could very visually see his thigh bones and the parts inbetween. He laughed because there was no doubting it. We were having another boy! I’d never had any inclination either way, but it was fun to know that Mac was going to have a baby brother.

After a 2 1/2 hour long ultrasound, we had a break to go eat lunch in the cafeteria. We dined and waited for the perinatologist meeting. I love me some good people watching and this was definitely a primo place for it.

We got to our appointment with Dr. Butler, the perinatologist, and he started explaining things. He told me about the high stillborn risk for babies with conditions like ours. Bring on the waterworks for this pregnant mama. We joked later how he was scanning around his office mildly panicing looking for the box of tissues. When talking about what this baby may be like, Marius and I never talked about or knew about the high risks of a stillborn baby. You see, never once, did I search online for anything to do with what this baby was going through. I asked the midwife to pick a couple reputable sources and print me out a page on the different problems the baby had. It was a coping strategy you never know you’re doing until it’s over.

While Dr. Butler talked about procedure and treatment options, he sounded a bit rushed. Not as in, he was trying to rush us out of there, but as in, he had already looked at everything to do with our baby while we ate lunch, and gone ahead and booked a thorocentesis and possible amniocentesis. He explained everything well, but basically told us that there was a high risk of heart failure due to the fluid in the lung cavity. When would it happen if left untreated? We could only guess. 5 hours? 5 days? 5 weeks? There was a sense of urgency you couldn’t ignore. Still, being practical and a little selfish, I asked about the possibility of putting it off until next week. We were moving the day after that and the procedures would call for me being on 100% bedrest for 24 hours, followed by 1-3 more days of very limited activity. In the end, we decided that it needed to be done that day. I loved Dr. Butler. Not ONCE did we have an issue. This may not be the case for everyone, but we’ve found that when you go to see a specialist and what you have is not very serious, well, it’s going to take a lot of waiting, etc. When the Dr’s know that it’s serious? Well, we were the product of being 100% blessed by an amazing medical system. Trash the Canadian medical system all you want, but my family is lucky to have it available to us. Had we had to pay it out of our pockets? We would have had to weigh the options and maybe take our chances at not having procedures done. We figure I had $300,000+ worth of medical care while pregnant. Really, there is no way my family’s required $135 a month to MSP (Medical Services Plan) will ever repay that.

Before I knew it we were being checked in for procedures. We had a seaplane to catch which put us on a timeline and they knew it. I laid in the bed while they swabbed my belly with pink disinfectant. Marius sat near the back of the room, because all around me there were doctors, nurses, screens and machines. He sat and watched the big screen TV ultrasound. As they got their 10 inch needle ready, I asked when they were going to give me some drugs, to, ya know, numb it. They said I’m sorry you don’t get drugs for this procedure. I said what about a sheet (like they do for c-sections). They said no. I said A SHIRT OVER MY HEAD SO I CANT SEE?! They said cross your hands on your chest and breath deeply. GULP. This gal hates needles. And that mother trucker was a big’un. The ultrasound tech was an older man, who talked to me in the most gentle voice. He got me to breathe with him, and explained how it would hurt less if my muscles were relaxed. Then I had this nurse on my left. Let. me. tell. you. She was hilarious. About 50 years old, cat eye glasses, leopard print tights, flats, cardigan. I asked her to talk to me to keep my mind off of it all. She didn’t know what to say so I asked if she had kids and she did. I asked her to tell me what they are doing today and where they live. She was able to keep a steady soliloquy going which did me good. They finished the thorocentesis and went onto the amnio. We decided to have it not for our own info or choices, but for them to be able to make a better treatment plan. (In fact, when they called us with results saying all was clear I just said, Thanks, thats nice.) The needle was still in me when one of the doctors was calling the lab saying the sample was on its way. Promptness like that? That makes you nervous. Marius thought the whole thing was quite nerve wracking and scary as well. The big screen TV made a barely visible needle look like a harpoon, and the 6 inch baby 18 inches. He said it was like watching his baby be harpooned and it made him sick to his stomach. In reality? The baby didn’t even flinch when the needle went in.

We get done and are heading out of there as quickly as a hunched over gal can walk. I hurt. It was painful. Noninvasive? My derierre. I had an anterior placenta (in the front) and that 10 inch needle had to go through it to get to the baby. We’re waiting for a taxi outside the hospital, and theres a line up. And we’re pushing time. And then the sweet man at the front of the line gives us his taxi because he over hears me say we’re catching a plane. He was a blessing in that day. We get in the taxi, rush rush rush to the seaplane terminal, drop us off, go to check in and oh? What? The taxi brought us to the wrong one. It’s not that long of a walk to get to the other one but I’m supposed to be on bedrest and remember? I’m still hunched over. So back to another taxi, where the most skilled taxi driver I’ve every had the opportunity to meet gets us to the other one. Marius told the guy “Killer driving, Man” (he never talks like that) and threw him a $20 bill for the $11 fare. Of course it was hurry up, then wait, because we lucked out on the plane being a few minutes late. Whew! The seaplane ride home was okay. I tried not to cry and Marius watched for sea life. We got back to Salt Spring, he took me to my Moms, dropped me off there (actually it was for his birthday dinner) and went to our place to keep packing. Because, remember? We were moving. It was a relief after that day to have my Mommy to take care of me. She fed me beans and wieners (actually homemade beans and sausage) and I sat in her comfy couch.

Mothers really hold a special place. I’m so lucky to have mine close by and that I get to stay home with my children!

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Part 2 of the Miracle baby story.

If you missed part one of the story of our Miracle baby, please read it here.

I don’t  remember the drive to my Moms house even though it only takes 6 minutes tops. Maybe I was on autopilot. Maybe I practiced what I would say. Maybe I cried the whole way.

I walked in the side door, the one that walks straight into the kitchen and kitchen table where they were eating breakfast. I can still see my Stepdad sitting where he always does right by the window. I can still see his face, was he stunned or shocked to see me? Me, the not early riser, there at their house at 6:30 in the morning.

I must have looked like I was about to fall apart because Mom stood up, and I heard the words “The baby”. I’m sure I said them but that choked voice I didn’t recognize was all I heard. I said again, “The baby’s not going to make it.” And like that she had me in a bear hug holding me tight. I tried to cry but there wasn’t many tears left so they came out like racked sobs.

When my body stopped shaking, Mom led me over to the chair and a half that we’ve always squeezed on together. I slowly explained the evening before. The message on the answering machine. The phone call to the midwife. The prognosis.

We talked about the worst. What if this baby was so terminally mis-formed like they thought? What if the doctors thought I should have a therapeutic abortion. I am pro-life, but therapeutic abortions where the baby is terminally mis-formed are a whole different beast. What do I say when people ask what happened? What if they judge me for a choice that wasn’t really mine? Mom held me tight and said “You don’t tell them Kate. You tell them you lost the baby. And if you don’t say anything more, no one will ask anymore”.

We tried to talk about the more positive side. What was the treatment plan? What would it be like? These were all questions I didn’t know the answer to. And I didn’t know when they would get answered.

I don’t function well without regular food, so Mom insisted that I eat something. I had sprouted bread with butter and almond butter. I thought I didn’t want it, but once I started eating I gobbled it down. It’s amazing what talking with your Mom and eating a decent breakfast will do for your spirits.

I was glad to have told my Mom, but ready to go back and be with my little family. When I got home I played with Mac and sat on the couch with Mare. We were playing a waiting game. Wait to hear from doctors, wait to hear from midwives, how many days would we have to wait for this?

We were relieved and surprised when at 9 am the phone rang.

“Can you be in Victoria at 2 for an appointment at the hospital with an Obstetrician?” 

They wanted us to see the Perinatologist, (One step above an Obstetrician, specializing in pre-natal care of a baby) but he was away and Dr. Cooper said he had time to see us.

Of course we’ll take it I answered. Then the rush started. That means we needed to leave on a 11:50 ferry off our little island. We didn’t want to take Mac, and a quick text to Mom revealed that she had business meetings this morning that she couldn’t get out of, but that she could take him later in the day. Next option was my sister Molly, but her phone wasn’t working. I knew she’d be home, so I left myself half an hour to tell her and visit her before I would have to leave her house for the ferry. Marius had some loose ends to tie up too so we went our separate ways just after 10 am with plans to meet up and head to the ferry at 11.

I was calm when I went to Molly’s. She wasn’t surprised to see me as showing up unannounced isn’t uncommon. Mac and Amy (my then 2 year old niece) played around while Mol, her husband Jer and I sat in the living room.

“So how did the ultrasound go yesterday?” she innocently asked.

I was surprised by myself, because I didn’t cry, instead I slowly started to tell the story of what happened. I put it into layman’s terms so it was easier to understand.

“The baby has fluid surrounding and compressing his left lung,” I explained, “There is a cystic hygroma which is a water pocket on the neck that’s usually a genetic marker for Down Syndrome or other similar ones. Maggie (midwife) doesn’t know what a cystic hygroma is. And it looks like the heart is malformed. It doesn’t look good”

The fact that our well seasoned midwife didn’t know what a cystic hygroma was made me a bit nervous. It obviously wasn’t very common.

She was shocked. She didn’t cry and neither did I. It all seemed removed and not real at this point because there I was sitting their healthy with my 18 week pregnant belly, and Molly with her just into third trimester belly.

“So what happens now?” she asked.

I told her about our call this morning and how we were going to go to Victoria for an appointment. Typical of our family the first thing she does is quickly figure out how she can help and tells me she can take Mac. I chuckle and tell her that that’s why I was at her house.

I realize the time and that I need to be heading out. Mac barely notices me leave as him and Amy love playing together. We hug, they wish me good luck and I headed to meet Marius not knowing what the day would bring.

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It was a quiet trip over. I napped in the car because…well, I was pregnant and that should be reason enough on its own besides the fact that I didn’t sleep the night before.

When we were in the CFAU (Children and Families Ambulatory Unit) of Victoria General Hospital I couldn’t help but wonder if this was a taste of what was to come. There was heavily pregnant woman and newborns that all looked like this wasn’t their first visit judging by their comfort there.

I was amazed by the speed which we were brought into Dr. Coopers office. God knows what you need, because Dr. Cooper knew just how to speak to one sad Mama and a confused Dad. He cut to the chase and pulled up the ultrasound pictures right away.

“I see nothing wrong with this babies heart,” He told us right off the bat.

Say Whaaaaa?

“From what I can see here there is nothing wrong with the heart, but we’ll book an appointment for a echocardiogram with the Pediatric cardiologist anyways to confirm.” A brick lifted off of one shoulder.

I don’t think he could have told me something better. But then he did.

He proceeded to draw a diagram, writing and drawing upside down the whole time so we could see of what was up with the baby, what treatment options were, and what optional procedures were. Basically, the cystic hygroma meant there was about a 60% chance of the baby having Down Syndrome, Turners, or another couple ones. He gave us a brief run down of what people with those were like. We sternly said that those were not deal breakers for us. He agreed. 

An amniocentesis could tell them more, and the fluid surrounding the lungs could be to do with Downs, or it could not. While it was ultimately our choice about the amnio, we decided to think on it. The cystic hygroma was only 6 mm big, but who knows whether that would grow or not.

“So tell me,” I asked Dr. Cooper, “Our midwife was given the impression by the radiologist that all signs pointed to a therapeutic abortion”

His words were like angels singing. “I see nothing terminal about the baby in this ultrasound.”

He went on “I see different procedures like a thoracentesis that will drain the plural effusion, but I don’t see anything terminal about this. There is nothing that isn’t treatable”

I literally held Marius’ hand skipping out of his office. We went in thinking we were going to lose the baby and left knowing we’d have a fight, and potentially a special needs baby. But we were strong, and those weren’t deal breakers. Bring it on I thought.

When we got to the car, I texted my sisters and Mom, then left a message at the midwives office. We were so excited and smiling. It was a beautiful Wednesday afternoon and we were going to have another baby after all.

Thinking back to that point, I’m glad we weren’t aware of the fight we still had, because that joy we had, the hope and excitement, is what got us through.

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Part 3 will soon follow

When the bottom falls out of your world.

I wrote about my beautiful home water birth experience on the blog years ago. I wrote with conviction. I wrote it because I loved it and I wanted to and was going to have another home birth with all my heart.

I was humbled last year.

 

I had two miscarriages before a successful pregnancy. We were past the scary part. It was all terrific. I can’t believe I’m saying this, but when I was having the 18 week routine ultrasound during that pregancy, I wondered why I was doing it. It was uncomfortable, it took forever, I’m young, I’m healthy, what are the chances of something being wrong. I have many friends who didn’t have any ultrasounds. They’re really a fairly new to the scene thing. Marius was in the waiting room with Mac chasing him around everywhere trying to get him not to destroy things.

What I didn’t realize until later is that the ultrasound tech didn’t really show us the ultrasound too well, and she printed off one carefully chosen picture. She didn’t want us to the black spot where lung should have been.

After the ultrasound I went and milked the cow and we had dinner with my Mom and Stepdad. I remember walking along a log and complaining to my Stepdad about how uncomfortable it was and how long it took and how much of a pain in the butt it was for Mare and Mac. We went home around 7, and I checked the messages as I always do when I walk in the door.

“Hi Kate, it’s Maggie (midwife), I just talked to the radiolgist and somethings not right with the ultrasound, give me a call at home right away” 

Message left at 5:30. A mere 2 1/2 hours after I walked out of the office and it had already gone to a major city hospital and back.

I took a deep breath. In my head I said “Please be missing fingers please be missing fingers”. I could deal with that. That would be okay. Click to the next message.

“Hi Kate, it’s Maggie again, I’m heading down to the office to do some paperwork, give me a call there.”

Uh oh. She updated me on her whereabouts instead of leaving it up to paging her. Something really wasn’t right.

I tried to talk but choked words came out.

“Mare, Maggie called. Somethings. Wrong. With. The. Baby.”

But how could something be wrong with the baby? I felt fine! I felt the baby move all the time! How could I feel so great when the baby wasn’t?

She picked up on the first ring. She asked if we wanted to come down to the office and talk to her. Just tell me now I said. I couldn’t bare a 15 minute drive with suspense so thick it would choke your breath. Is Marius there with you? I tried to talk again but all I heard was a strangled voice saying “Yes.”

I don’t remember her exact words. I remember feeling stunned. I remember Mac in the background ripping apart a new bag of 24 toilet paper rolls and unrolling them down the stairs. I remember writing down notes so Marius could tell what was going on and so I knew for later.

Plural Effusion of the Left Lung

Cystic Hygroma

Malformation of the Heart

Down Syndrome

“But Maggie,” I asked, “Tell me. Tell me straight up. What are the chances. Will this baby make it? Or will we lose this baby.”

“Oh Kate,” Her voice choked as well. “I think you need to prepare yourself for losing this baby”

She’d been with me for the long haul. She cared for me when I was 16 and pregnant. She caught Mac in our beautiful home water birth on a sunny July morning that she still remembers the peace and calm of. She talked me through my first miscarriage. She held me up and encouraged me after the second. She wasn’t just a care provider. She was an integral part of what having babies meant to us.

She went into details about what specialists she was currently faxing requistions to and what was going to happen. My mind started to blur. I’m not sure I even answered her goodbye.

I cried until my ears and head hurt. I managed to tell Marius what was going on. And he said with conviction “If there is 1/100 chance then we are are fighting on that.” I cried until my body shook and there wasn’t any more tears to come out. Until your throat hurts like your stomach is trying to crawl out of it.

I laid awake most of the night. I thought about newborn heart surgery. My mind wandered to the dark depths of therapeutic abortion before my heart chased it away. I cried some more. I thought about Down Syndrome and how I would be that babies biggest advocate if please Lord please I could just meet it. By 4 am I was tired of trying to sleep. I wanted to tell my Mommy. I wanted to go and be with her and for her to cuddle me on her lap and tell me it was all going to be okay like she would have when I was 5 and cut my shin open on another oyster shell. I also knew I didn’t want to wake her up, but that she was an early riser. I texted instead. “Text me when you’re up”. She got it at 5 am and thought that it was from the night before. “Just let out the chickens” I got at 6 am.

I told Marius I was heading over there. That I couldn’t lay in bed any longer. I doubt he’d gotten a wink of sleep. He too laid awake all night trying to comfort my tears.

I’m breaking this into parts so it doesn’t get too long. To be continued…

 

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Our new Baby

The last time you heard from me was the beginning of July. I can’t begin to tell you how many life changing things have happened since then. I’d told you before that I was expecting. On June 19th, the day after our first wedding anniversary, I had the regular halfway ultrasound and we got devastating news. Our baby had fluid surrounding and compressing his left lung, he had a cystic hygroma on his neck (basically a little water pocket) and his heart looked like it was malformed.  The long and the short of it was that we were going to lose him. We went to see a specialist the next day and he looked over the ultrasound again and said No, we weren’t going to lose him but the cystic hyroma is most commonly a genetic marker for down syndrome or other similar syndrome. His heart was fine, and everything else could be dealt with.

We didn’t care. The baby was going to live. Down Syndrome wasn’t a deal breaker for us. We’d had two previous miscarriages in the last year and we were so excited just to be having a baby. Who were we to pick how it was going to be when it was born? If that’s what the Lord chose to give us, then we’d readily take it.

As weeks, doctors appointments and tests wore on, we scaled back on everything that wasn’t mandatory for us.

In the end the baby had 14 ultrasounds, 1 echocardiagram, 2 thorocentesis (where they go in like an amnio, but going into the babys lung cavity to drain it and take pressure off the heart), 1 amniocentesis and saw more specialists that I have fingers.

As the weeks wore on we saw things get better and better and different conditions go away on their own. This baby was a fighter. The prognosis only got better.

Until the point that nothing was wrong. I still had to go to a major hospital to have him, as they wanted pediatricians to be there when he was born. If you remember, Mac was a home water birth, so this was a totally different experience.  Both were pleasant, I had top notch medical care both times. While I am a big advocate for home birth and hope to have another in the future, I feel beyond blessed to have the medical system at our fingers for no additional cost.

November 6th, 2012 at 11:45 pm,

Hamish Adalai came into the world. 8 lbs 13 oz, the pediatrics deemed him perfect and ready to go home when we were ready.

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We strongly believe in the power of prayer and positive thoughts, and we had an army of people rooting for us.

We are so blessed, and so enjoying this little boy.

I’m going to be posting more regularly, and first up is a series of photos about what we’ve been upto!