Yet another...

appointment. I think I need to start getting creative with the names. Its become quite boring and I know everyone keeps seeing 'appointment' in their bloglist. So lets say I had another meet-up with the docs.

This was my son:



No kidding, he would not hold still. The doctor was getting the biggest laugh at it. At one point she said, "he just shook his booty!" It was pretty funny to watch.

And... his heart rate was up. But we think that it might have more to do with the fact we caught him during a dance concert and less that it means anything. Parker was in a very happy mood!

And, we really don't know whats up with the 24 hr monitor that the cardiologists want to put on me... my dr said she has never heard of that, and the only way she'd be capable of that would be sending me to labor & delivery to sit for 24 hours. And thats just not something I'm allowed to do, because if I ever went into L&D with the heartrate so low they'd immediately deliver me thinking something was wrong with the baby. I'd have a mask on before I could even explain!

Well, thats it for now. Next appointment set for Monday, and I plan on doing a TON before then to prepare for the P-dude.

Amy

A big appointment...

Well, I'm absolutely exhausted. Its been a long day and I am beat.

We had one of our bigger appointments today, a fetal echocardiogram up at Primary's. For those that don't know, a fetal echo is where they literally just stare at the heart. Its a very long and pretty dull appointment. By the end of it my arms have gone numb and my neck hurts from stretching to see. They also have a harder time viewing as his ribs are getting harder and causing shadows on the heart. After awhile, the dr comes in and takes a look too. And then they direct you to the 'bad news' room, a small room with a cushy couch and a box of tissues. They won't really tell you anything until that room. They also call in a social worker and a 'patient advocate nurse' to give you support and make sure you're feeling ok.

After they sat me down (I went to this appt alone) they gave me the news. The pills were pointless. They did nothing but give me the jitters and a headache. The one high heartbeat rate I got was a fluke. Although to make sure, they want me to do a few days of 24 hr heartrate monitoring, where I wear a belt all day and night. If anything happens, a peak or spike after the pills, they will keep me on them and raise the dosage. If not, they'll take me off it.

They will continue monitoring me twice a week to check for hydrops, or any sort of swelling. If they form, they will take him out. If they don't form? They'll still take him out at the end of October. They want to get him to 32 weeks. That is Oct 22. There is just so much more than they can do for him out. He's also easily monitored outside, where if something goes wrong they'll know quickly and can respond quickly. They would do it sooner, but 32 weeks makes him so much bigger, stronger and healthier that they'd prefer to wait.

Thats right, no more than four weeks and I will meet my little guy. I am so nervous and overwhelmed and ... I don't even know. I always assumed it would happen, but to get verification from the doc is so huge. I'm trying to think of everything I wanted to get done, and deciding whats important and whats not.

So.... thats where we are.

Amy

Quick little funny

My friend lent me a doppler to use for this pregnancy, and I admit its been a relief sometimes to hear his little heart. I bought a new bottle of ultrasound gel, and I had to chuckle. On the bottom, perfectly clear, it said "Parker". Is that where I got the name? No. Plus, my mom is not too keen on the name Parker. Think of it like this, at least I'm not naming him Aquasonic!

Although, come to think of it, that'd be pretty cool!

The low-down

Well, lots has been changing, plenty to say.

The pills stopped working, so to ensure his heart rate stays at a healthy place they will be upping my dosage soon. Hopefully this will last a bit longer than the last dosage, but there are no guarantees.

After they stop working (again) the doctors will take him out. The result of this? Parker will most like (95% chance) be a preemie. We'd like to keep him in there as long as possible but at that point it will be safer for him to be out than inside my belly.

I was given the steroid shots for his lungs a few weeks ago, so hopefully he'll be a healthier preemie.

I will be delivering at the University of Utah so he can be rushed to Primary Children's, where the fantastic cardiologists over there will treat him. He will be getting a pacemaker. I am not quite sure how old he will be when he gets this. I imagine they'll wait until he is at least 1 or 2 days old, but it is important that it be quick. His little body and heart have been working so hard to stay healthy, that time is really of the essence.

Having a pacemaker will make life difficult for awhile, because there are quite a few restrictions that we need to be on the lookout for. He won't be able to play with magnets, so we're going to need to get rid of all Colby's magnet toys and he will not be able to play with our cell phones, and even some remote control cars are too strong and can alter the pacemaker. There are other things that he cannot do in his life- play football, work on a car under the hood, get the wand from airport security, a few medical procedures and tests that use magnets, we cannot hover by the anti-theft devices in doorways... just all completely random things that can alter the way the pacemaker works.

A pacemaker can last anywhere from 3-5 years on battery life, but as he grows older he will need a few more surgeries to replace the pacemaker. A battery replacement surgery isn't a big deal, just a small slit in the skin. I imagine his first pacemaker might stay in there 1-2 years. We'll have to see how it goes and if it is strong enough before we can say for sure.

And now, the million dollar question that everyone always asks- how are you guys doing? Well, as a family, for now, we are fine. We understand that big things are happening and we are trying very hard to stay calm about it. We go to doctors appointments twice a week, and this causes a lot of stress (usually because we don't have 'good news' appointments as often as the 'not so great news' appointments) But we're holding on and thinking good thoughts for our little guy. We know that worry won't do a whole lot for him, so we try to avoid it.

And thank you thank you thank you to all those who are trying to make our burdens lighter. So many well-wishers and special helpers have definitely made this journey easier. We haven't taken up many people on their offers to help, but even offers make us feel good, to know that we are loved! We appreciate it so much, thank you!

Way to go, Parker!

Well, I have been on the medication now for almost two weeks. At first, it didn't look like it was working. His rate was still in the 50's. However, at my last appointment, it shot up to 75-79! This is huge, it hasn't been that high in six weeks! I am so proud of my little guy. It would be so easy for him to just quit, but not my Parker. He's stubborn and bull-headed (much like his mommy) and wants to do things his own way.

Looking forward to that number staying high... The medicine won't work long term but I wouldn't mind another month or two at this higher level.

Hehe, it feels like Parker's having his first set of hiccups. I'm so glad to be pregnant with this little guy!

Amy

3D pictures!

While at my last appointment, the lady was nice enough to give "Colby" some 3-D pictures. He was so thrilled to see "baby Parker TV!!!" that she wanted him to get a good view of his little brother. I am so grateful, I loved seeing the little guy growing inside of me. In just a few short weeks his 3D pictures have gone from gollum/alien to adorable little infant. I think he looks a bit like Colbs, especially the nose, what do you think?

(love his little grimace here!)

Parker's Heartbeat Comparison

I wanted to do this comparison to show Parker's heartbeat (aka incredibly slow) compared to a normal heartbeat. His is about 52 beats per minute (as of our last ultrasound) and a normal one is between 110-170. This example is about 150.




Here is Parker's, with one of his ultrasound pics.

All About Parker!

We found out we were pregnant with him on April 7th, and we were absolutely overjoyed! We first saw him on our anniversary, May 19, with a tiny little body. I was always so sick, he gave me a lot more morning sickness than I ever had with his brother, Colby. We were thinking it was a girl, because I had tons more symptoms than with Colbs. However, on July 26, we were very shocked to see he was ALL boy. He seemed so proud of his parts too. LOL

Unfortunately, at the same appointment, we found out that his heartbeat was a bit... slow. It was 70-90, when heartbeats should be between 110-170. They wanted us to go to the perinatologists, or 'high-risk' dr's, just to be safe. So two days later, we had another full on ultrasound. They confirmed he had a low heartbeat, and gave us a 'guess' that it was a heart block. We would need to go to Primary Children's Hospital to get a fetal echocardiogram, where they would get a better look. At this appointment they confirmed his congenital heart defect, and diagnosed it as Complete Heart Block. The heart is formed perfectly, its just slow.

However, he's going to be just fine if his heartrate stays up. He is such a happy and active baby. He is always kicking. I have ultrasounds twice a week now, and at every one he is rolling and squirming. This kid never stops! It feels like I already know him so well. He is such a little fighter. He is always kicking and punching my waistbands, he hates to feel them on him. He is so strong, and getting stronger by the day!

The outlook right now is unknown. His heartrate has slowed down even more, so I will probably be getting on medication to speed it up. He will probably need a heart surgery soon after birth to put a pacemaker in. We love our little guy and look forward to the day when he can hold and snuggle him!