The Reality of HLHS

When we first received the news that baby-to-be had Hypoplastic Left Heart Syndrome, I was in an exam room with a screaming toddler. Tony had left to go to work and I was there to have my monthly check-up. A doctor (not my own) came in and gave me the news. I was taken off-guard and had no clue what to ask. So, like every person who has access to the internet, I went home and started to do my own research.

The information out there only gave us an idea of what HLHS entailed. The scientific papers & studies were, well, really scientific. The 'personal stories' were vague. We wanted details. It wasn't until we met with the pediatric cardiologist that we received realistic statistics. A lot of what I had read on the internet had given me false hope.

In most of the scientific papers that discussed the surgeries, they gave a survival rate of 75-80%. The cardiologist let us know that those statistics only take into account the babies that have the first surgery and are released from the hospital. Those numbers do not take into account the newborns who die before surgery and those who pass away before the second surgery. When you look at it that way, the survival rate is more like 50%. And then, 10% of those children do not survive the second surgery and then many do not make it to the 'final' surgery.

A child with HLHS is put through 3 open-heart surgeries in the first few years of their lives - at a minimum. The possibility of complications is high. Since this is considered such a new procedure, cardiologists aren't really sure how long the rewired two-chambered heart will last. Many of these children will need a heart transplant sometime in their teens; some might make it to their early twenties.

I think it's pretty amazing that doctors have figured out how to make a 2-chambered heart work well enough to keep a person alive. But, it's really important to take into consideration how having half of a heart will effect the rest of the body's organs.

I wanted to write about what we were told by the pediatric cardiologist (and there was lots more) in hopes that it would help other parents who have just found out that their baby-in-utero has HLHS. For a week, we thought Baby Bee had a better chance of survival and had no idea the kind of pain he would go through once he was born. We had to make the most difficult and painful decision once we had all of this new information.

Playing in the Rain

Last week, we received some glorious rain. Of course, it started raining shortly after I promised Malcolm we'd go outside and play in the garden which is one of his favorite things to do. We found out that a little cold rain doesn't deter the determined tike.

Our Current Reality

This is not going to be an uplifting post. Far from it. Consider yourself warned.

On Monday, we had our 20-week ultrasound. We found out that Baby Bee is a boy. We also found out that he has Hypoplastic Left Heart Syndrome (HLHS). Essentially, the left side of his heart is not developing and is not functioning. You can get more details by doing a Google search.

I will be going in for further testing in the very near future to see if there are more birth defects. If Baby Bee only has HLHS, the hope is he will be able to have open heart surgery shortly after he is born. He will either have a series of 3 surgeries to allow his 2-chamber heart to function or he will have a heart transplant. There is a 25% chance that he will not survive his first surgery.

We were completely taken off-guard by this news. The last thing we expected to hear was that our baby-to-be has a very serious and rare heart defect. We are filled with a deep sadness. This has been the hardest thing either of us has ever been through and it's only going to get harder.

A Birthday Shout-Out

Malcolm!

Happy 2nd Birthday to my adorable, funny, nutty little boy. We can't believe you are two already! Your Daddy and I love you a million tons of love. It's so much fun to see you grow up.

xoxoxo,
Mommy

Update on Being a Parent

And having a parent - Happy Birthday to my dad! He's 30 years older than me today!

18 week belly picture:

I started feeling Bee move around at 17 weeks. I'm now 19 weeks pregnant - almost halfway there! Next ultrasound is coming up on Monday.

This past weekend, we went over to Julie & Jeremiah's house so the kids could play. Here's one of my favorite pictures:

To see the rest, go to my Flickr page. Eliska and Malcolm play well together; she's pretty enamored by him and follows him around everywhere.

The little guy has finally started saying his name properly. We've known that he's known how for some time now because sometimes he'd slip up and say, "Malcolm" instead of, "MahMoh". He hasn't called himself MahMoh in a few days.

Five!

Happy 5th Birthday, Cameron! We'll have to celebrate when Malcolm and I come and visit you in San Diego in September :D

Aaaahhhh...Brief Relief

For those of you that watch the news, you've probably heard that Seattle experienced a record high in temperatures this week. Since many of you live in areas of the country that get hot like this every summer, you may be thinking, "When it gets into the 100's around here, I just stay inside." Well, that only works if you have air conditioning which few places in the PNW have. Our good friend, Julie, recently had central AC installed in her house. She just so happened to have a portable AC unit that was going unused that she is letting us borrow. We thought about buying a couple of window units but not until there were no AC units to be found. Thanks to the generosity of Julie, we've been able to sleep.

This morning, I awoke to temperatures in the low 60's. I opened every window and currently have goosebumps from being chilled. It is glorious. The temperatures are expected to be in the high 80's/low 90's later today, so we're enjoying this while we can.

Hot.

Hot.Hot.HotHotHot.Hot.

HOT.

Mal's First Camping Trip

This past weekend, we went on a much anticipated camping trip. It had been 3 years since we had camped last and I've missed it. I found a great deal on a huge tent that Tony thinks is too big. Our other tent was fine for the 2 of us but would have been too crowded for 3 (soon to be 4). We also got Malcolm his own sleeping bag and camping chair that he loves.

I packed up our car Friday afternoon and we picked Tony up from work and headed north. We decided to camp at a campground that we'd been to previously and also try a hike that Tony & friends had done but I missed out on due to my back seizing up. Our trip there took quite a bit longer due to our first car sickness incident (yuck!) and me missing our turn and driving waaaay too long before realizing it. But, we made it there and our friend, Eric, had already arrived and started a fire. Adrianne & Natalie showed up an hour or so after us and we settled in for the night. Although Malcolm loved playing in the tents at REI, he wasn't so sure about sleeping in one that night. After finally falling asleep, he only woke up once during the night.

On Saturday, we headed up to the North Cascade Trail a bit before lunchtime:




We have a backpack carrier for Malcolm that Tony carried him in for most of the way. Mal loved going 'up up in the air' as we climbed. After about 2 miles, Malcolm decided that he'd had enough so The Johnstons headed back down while the rest continued on the trail. We now know the limit for hiking distances with Malcolm at this age. Tony also discovered that it's a lot more work carrying a toddler on your back.

Back at camp, Malcolm spent most of his time throwing rocks which is one of his favorite things to do. We had a tough time keeping him out of the fire pit (when there was no fire going, of course). In the early evening, a fellow camper was walking around with his 3.5 year-old son and he and Malcolm ended up playing for a couple of hours. I think that might of been the highlight of the trip for Mal. He had a much easier time going to sleep that night but had a hard time staying asleep due to the cold and his insistence of not sleeping with covers. He ended up sleeping with us which meant I slept really poorly that night.

We spend Sunday morning having a leisurely breakfast and took our time packing up camp. It was really great to get out in the mountains and spend time together as a family and get to hang out with good friends. We can't wait to do it again.

Welcome, Trekell Boys!

This morning, my fabulous friend, Jill, gave birth to her twin boys; one naturally and the other via c-section. We're glad you are finally here, Max and Alex! I hope to meet them later this afternoon.

My 'friends who are pregnant' list is dwindling quickly. No one else has announced a pregnancy since me. Right now, I have 6 local friends who are pregnant (not including me). I have three friends who are trying to conceive so I'm hoping they'll have news soon.

Babies!

A Quick Hello

All is well in Johnston Land. Not much new to report. I've been plagued with daily headaches and try to avoid taking Tylenol too often since it can be bad for your liver. We've been busy going to play dates and whatnot. Today, my goal is to clean & pull out our camping gear to take inventory. It's now 1:15 PM and I have yet to lift a finger. I blame the headache.

Comparison at 13 Weeks

Here is my belly at 13 weeks:


Looks very similar to this, no?


Guess how far along I am in that second picture when I was pregnant with Malcolm...21 weeks.

Ugh.

I broke out the maternity clothes this weekend. Sad face.

Father's Day

A few weekends ago, we went on a family bike ride. The city closes the street by Lake Washington on Sundays during the summer so bike riders can ride without worry of cars to and from Seward Park. I bought a new bike last summer but haven't ridden it often because Malcolm hated the trailer. I finally got around to selling it and I bought an iBert bike seat to replace it. He LOVES the seat. Tony had bought Chris' old bike from him a few years ago and had yet to ride it before that day.

We had a great time on the bike ride but Tony hated his bike. So, for Father's Day, I got him a new bike (he picked it out). We went on a bike ride to Seward Park; it's this gorgeous park that is just a few miles away from our house. Malcolm loves to sit by the shore and throw rocks into the water. He loves it so much that he throws a big fit every time it's time to leave. Here are a couple of pictures:





We'll be doing the family bike rides for as long as I can manage. Tony is loving his bike so much that he's planning on father/son rides once biking becomes too much for me. He's also eager to get out without me because apparently I ride too slow. Can you blame me? I'm freaking pregnant and carting around a toddler on my bike!

I've also been taking Malcolm out on the bike a few times during the week. We'll bike to the park and to the Farmer's Market. I get stopped constantly by other parents asking me about his seat :)

Atlanta

It seems almost silly posting about our trip to Atlanta 3 weeks after the fact, but I said I would and I'm not one to go back on her word. I'm going to do a short recap.

My awesome friend, Betsy, got married to her awesome girlfriend, Sarah, in Costa Rica a couple of months ago. We could not attend the ceremony for a variety of reasons. They decided to celebrate with all of their friends and family who could not attend the wedding during the last weekend of May in Atlanta. We packed up our bags and got on a plane and went.

We spent our trip hanging out with a bunch of really great people. Kik and Amy came up from Tampa and I actually got to see some peeps from Tallahassee for like, 10 minutes. We also got to hang out with my old friend, Keely, and her 2 daughters. Malcolm still talks about Tuesday (Keely's 4-year-old).

It was a lovely family vacation. Every time I get to hang out with my southern friends, I want to move back just so I can do it a lot more often. Here are some pictures:

After dinner on our last night there:


Malcolm and Tuesday walking in the park:


To see the rest of the pictures, go here.

Results - Thumbs Up!

We got the results from the tests run earlier this week and everything came back negative which is a Very Good Thing. There is no indication of Down's Syndrome or Spina Bifida. For those of you that don't know, the risks of these two things increases an enormous amount once you reach the age 35.

We've been keeping busy with play dates galore. I purposely didn't schedule anything today so I could have a bit of downtime and a few minutes to clean up the house in preparation for tomorrow morning's play date. It's raining on and off today which is wonderful - we needed it very much! Our garden has been a little neglected - there is much to harvest. I harvested the broccoli last night since it looked like it was about to bloom. We'll be noshing on that all weekend. I hope to get out in the garden this afternoon to pull up the broccoli stumps and make room for the zucchini. I also have a ton of kale that needs to be harvested.

A Bee

Here's a little profile of the occupant in my uterus. And no, the technician wasn't even going to try and tell the sex of the baby. Everything looks good so far. At one point during the ultrasound, Malcolm pointed to the monitor and said, "Bee!" We were going to call the occupant 'Jellybean', but now I think it must be 'Bee'.

Checking In

Hi. I'm here. A little tired from lack of sleep. OK, maybe a lot tired. We went to Atlanta last weekend for a little family vacation to visit friends and had good times. I will post pictures sometime in the future.

Pregnancy update: Haven't really had any nausea and my food aversions are pretty much gone. I've started cooking again and buying food which has been nice. My energy is up a little bit but I'm still not pushing myself too hard. Some days it's very difficult not to because, well, the house is not going to clean itself. I have my first doctor's appointment next Thursday and have genetic counseling and ultrasound on the 15th.

Only 30 more weeks to go! Ha.

Comparison

Here's my belly when I was around 7 weeks pregnant with Malcolm:


And now, here's my belly around 8 weeks pregnant with #2:


I already can't fit into most of my pants & skirts and my t-shirts ride up my belly.

Could it be twins?

Dear Energy, I Miss You

Malcolm loves going to the Kid's Corner at the YMCA. He asks for it. Unfortunately, I have had a very hard time mustering up the motivation to work out. When people are usually low on energy, exercise helps except when you are low on energy due to pregnancy. I took him to the gym a couple of times this week and totally took it easy; all I did was bike & walk on the treadmill. It killed my energy for the rest of the day.

I think it's time for me to start doing some menu planning. I've had a terrible time figuring out what to cook for dinner the past couple of weeks because the thought of all food nauseates me. I talked to some of my other pregnant friends to see what they do since this seems to be a problem for every woman when pregnant - they make the standard favorites of the family and *try* to eat it but if they can't, no big deal. Now I need to get off my butt and start the planning.

What did pregnant women eat before cereal was invented?

What I'm Reading

I am fully aware that by the end of the year, I will have very little time to myself. One thing I'm going to do my best not to give up is reading. Right now, I go to bed a little early so I can read in bed for 30 minutes (rarely do I make it that long). I'm currently engrossed in Under The Banner of Heaven and In Defense of Food. I've also started reading Eat, Pray, Love, but it's not grabbed my interest very much. I've been a bigger fan of non-fiction lately; I just haven't read any great fiction recently.

So hey! Happy Belated Mother's Day! Mine kinda sucked. I spent most of it in bed feeling exhausted and nauseous. Bland food is my only friend. Tony gave me the best gift - he took care of Malcolm all day so I could rest. He also got me a beautiful bouquet of flowers.