Happy Happy! Joy joy!

I am HOME! And exhausted! But home!

I went in to the cardiologists today, and he said "wow, things are starting to look a bit better! The amount of fluid has gone down, and this baby looks fine. So we're good, you can keep staying in the hospital and we'll keep monitoring you!" And... I started crying. A part of me was hoping that the dr would say "Oh no! Lets deliver you today!" not because I want my son to get sicker, but I cannot stand to be in the hospital. I think its pointless, and just causing so many problems for so many people. My family is torn apart and its becoming quite stressful. Once the dr saw my tears, I think he realized that this was not what I wanted. So in an effort to stop the hormonal pregnant lady from sobbing, he told me I can go home if I abide by his conditions.

UHM, YES! Anything! Let me hear it!

So here they are:

1- I have to have daily ultrasounds up at that hospital. Weekdays, weekends, everything. They want to continue monitoring the fluid amount, and checking that he's moving. Basically, just making sure he's not getting distressed.
2- I have to go in for weekly fetal echo's with the cardiologists as well.
3- I have to also visit with the head of the high-risk doctors up there, as sort of a consult. They want to make sure that I understand everything that is going on.

So it will be tough, but I would so much prefer that than the current situation. It is tough staring into space, wondering when the next meal will come. Missing my husband and child. Feeling the guilt and the sadness of the situation. Dealing with VERY incompetent nurses (not all, I had a few I loved!) And the run-around as all million of my doctors and nurses tried to communicate, and failing miserably.

So instead, I get to sleep in my bed! And spend my son's birthday with him! And see my husband all week! And hug my kitties!

Of course, this could all change in a second. If for any reason, Parker's not doing well, I win a one-way ticket back to the hospital. But I will take what I can get.

Amy

Sleepover

It finally worked out that I could have Grant spend the night with me in the hospital while Grandma and Grandpa took Colby for the night. Colby had a wonderful fun night, and it was so relaxing and great to have a night with Grant, just the two of us. To feel him near anytime I wanted, to not have to say goodbye.

Grant didn't really enjoy the 'rest' he got, though. This pile of blankets? Thats him hiding from the lights and noises of sleeping in a hospital.
First of all, lets forget that his pull-out sofa is almost twice the size of my bed.

The noises I understand are HORRIBLE. That vent right by him? That is non-stop loud white-noise air. It never stops, period. And then, there's my bed. Its one of the hospital hydraulics beds, right? But about every five minutes, it 'goes off'. I liken it to an airplane about to take off. It slowly builds up in loudness and intensity, until about three minutes later it just shuts off. So when you're trying to fall asleep at night, either you're listening to it 'take off' or you're waiting for it to do so. SOOO noisy.

And the lights. There is a light in the wall that never turns off. Period. Its also right at my eye-level when I'm sleeping on my left side. So annoying.

And the best part, the constant visits from nurses and doctors. My night schedule is horrible. I go to bed at 11, and the nurses wake me up (with lights, noises, etc) at 12, 4, and 8 for a heart rate and also to get all my vitals. And for kicks and giggles, all the doctors file in about 6 am to say hi and see if I need anything.

So after my the doctors left at 6, I peek over at Grant and see him like this. Yeah, he'd never hold up to living in a hospital! But it was nice to climb out of my bed and go snuggle with him. Its the part I miss the most about home!

Amy

small bit of information...

They have stopped caring how low his heart rate is. They are just more checking to make sure he has one. (ok that sounds a lot worse than it really is. Oy.)

They keep monitoring me more for movement and to check that the fluid around his heart isn't getting too much bigger. They just want to make sure he's not in distress. If he is, they'll take him out.

And I LOVE LOVE LOVE my dr, she has informed them that she will be doing the delivery. I miss seeing her, so it will be nice to have a friendly face there at that moment when I'm scared and worried. So although its not her turn for rounds up here, she'll be there. Love her.

Amy

Today's update

Well, its hard to say, but I think I am 'settled" in here now. I have a few regular nurses that I just adore. I have caught on to the routine. I've survived a day. So I guess I will be ok.

Parker's heart rate dropped again. Geez, I wonder how many times I've said that on this blog. At my ultrasound today, they got a 48, 45, and 43 reading. Frankly, I am curious how low they are going to let it get. It makes me more and more nervous.

Plus I feel like I don't really have a doctor anymore. There's a million doctors looking at my case, but I don't think the communication is the best. I am being looked after by the local hospital doctors, with them updating the Primary cardiologists and my old doctors. But I think the local hospital doctors don't share information as well as they ought to. I am still waiting to hear what my doctors and cardiologists thought of the ultrasound, and the doctor was going to inform me ... 6 hours ago? Its kind of driving me nuts.

Luckily though, today hasn't been too bad. I have had a few visitors that have brightened up my day, and I love the people who are chatting with me online throughout the day too. It makes it go quicker and I don't lose my mind!

Well, I guess thats it. Its getting late and I'm running out of things to say!

Amy

Phew

This has been an insane evening, for sure. But is official, I was admitted into the hospital and will not leave until this child is out of me.

This has been so hard for me. I really really really do not want to do this. But if the dr's think its for the best, well I have to respect that. I have to do everything in my power to get Parker here safely. I would never be able to live with the guilt if something happens that could've been prevented by me.

Its been a rocky and difficult evening. Grant took me up with Colbs along for the ride. Colby was in a horrible mood because he hadn't gotten a nap and it was past dinner time. And it just seemed like the doctors and nurses were out to get me. I wasn't allowed to eat or drink. I have to have an IV. Cervix check. Group B strep swab. They changed my due date on me. I was just miserable and wanted to sit down and cry. This was not something I wanted, and it seemed like they were just making it worse.

The absolute hardest part though was saying goodbye to my son and husband as they left. I couldn't hold back the tears, which made my husband emotional. He wanted to just sweep me away and take me home, but it wasn't possible. And Colby was confused as to why they were leaving mommy hooked up in this bed. We said a prayer before they left and it was just so hard.

Fortunately though, things started happening for the better. The doctor came in and said they were moving me to a regular care room, instead of labor and deliver. I would have no monitors. No IV. I could wear normal clothes. And I could EAT! I would be allowed to wander the hospital, I just couldn't leave. And I needed to have checks on the baby's heart every 4 hours. I was more than happy to make that deal.

And now, well, things are good. I'm alone, but friends are doing so well and keeping me company online. I feel a bit better with how things are going. My stomach is much happier now that I've had some food. I feel comfy in my pajamas. I wouldn't say things are great, but they are definitely bearable.

Amy

What an emotional day...

So at the appointment today, things did not go well. Parker's heart is now beating at 48. Below 50 is VERY bad. Also, a bit of fluid is forming around his heart. Not a lot, but it is a sign of heart failure. The ultrasound technician left to go get a doctor, and due to a lot of patients she brought in a new dr I had never met. Apparently, this doctor did not know my background, and did not realize how huge these things were. How dangerous they could be. So she patted me on the back and said "see you on monday!" I walked out of there confused, but I figured she knew what she was doing.

I got home, and talked to my wonderful stepmother as she cleaned my house for me. She left, and as I was sitting down to lunch I got an urgent call from a doctor from the practice. She's not my main doctor, more the #2 of my case. She said she was going over the notes from my ultrasound, and panicked. She was not told of the results during the actual appointment. She told me to rush down to Primary's, so the cardiologists could have a better look and decide what to do. She said "you have been doing so well, we don't want to lose this little guy!"

I rushed. I ran. I cried a bit. This little guy has been having such a difficult time lately.

After a quick echocardiogram, the dr did confirm the previous findings. And then he dropped the bombshell. He wants me to be admitted to the hospital so they can monitor me closely. For how long? Until this baby is born. And he wants to get the baby to 32 weeks. At least two full weeks of sitting in the hospital alone, without my son and my husband.

What will I do with Colby? What will I do without Colby? I have no idea how I will make it. The thought alone is making me sob. In all my planning, I never thought that something like this will happen. I am not prepared for this. My son's 3rd birthday is in 10 days. I do NOT want to miss it.

The dr was going to call my dr to let her know of his thoughts, and I hope she talks him out of it. I really do. I would honestly prefer to deliver this child tonight than have to go through that. I feel horrible and selfish for saying that.

Right now I am just depressed and a mess.

Amy

*sigh*

Well, that was a completely exhausting day. I finally got home about 6, and after a second dinner (hehe) I just had to go to bed. My legs felt like lead and my brain was so fried.

Its kind of weird being in this position, but a small part of me is disappointed that he didn’t come last night. I know its better for his health to be in there longer, don’t get me wrong. But this entire thing seems so… draining. Going to appointments twice a week and playing the mental game on whether my son will be ok this week or not. Over-analyzing his kicks. Taking pills every 6 hrs that end up not doing a thing. It seems like every minute of my life is wrapped around this pregnancy, and I’m just sick of it. I’ll do it for his benefit, but I can’t pretend a small part of me wasn’t thrilled to get to ‘the next stage’.

And also, after the initial panic and heartbreak, I sort of got excited. I was going to meet my son! To see his little toes and fingers. To gently scold him for being so difficult, and to tenderly graze his cheek with my fingers.

But I guess it isn’t so. October 4 is just not his birthday.

Amy

Goin Home!

Well despite everything looking questionable, they're send us home. Parker seems to be moving fine, even though the other things are still a concern. If anything, they're just going to monitor us a bit closer, maybe 3 appointments a wk? LOL great...

So exhausted. What a long day!

so far...

not much to report. theyre trying to monitor me but can't get his heartbeat with regular stomach monitors. they took me in for an ultrasound that told them nothing new. hes still measuring small and still has a slow rate.

and they gave me food! i have not eaten since ten pm last night, and that was a cookie. this morning i had my glucose test so i didnt eat, and then after the horrible appt i wanted to not eat in case i was rushed right in to a c-section. now its after 4 and i am delirious with hunger. 18 hrs of no food. but the fact that they gave me food means parker wont be here too soon.

so just waiting, watching, seeing what is going to happen.

amy

what a horrible monday.

sorry in advance for the lack of capitalization, i am typing this one handed while in a labor and delivery room.

today at my twice a week appointment ... well it didn't go well. They did measurements and discovered he's measuring at 25-27 weeks, which is pretty bad because he is supposed to be right at 29. so they checked out the umbilical cord, and I guess its not working up to speed. they think that he's notbeing given the nutrients he needs to grow, which is really bad because of the heart thing. Also he has decreased fetal movement, we could barely get him to move even after taking the nasty glucose drink.

So my Dr. wanted me to go to the U (where I have to deliver) to monitor him and potentially deliver him. We are currently at the U of U hospital, and hooked up to all sorts of monitors that can't find the heart beat (we can hear a lot of movement though).

At this point all we can do is wait and see. We are worried, but hopeful.

The really ironic thing is that it has been exactly 10 weeks since we first got the initial "something might be wrong" ultrasound. We were really hoping to keep him in as long as possible, and at this point we are just hoping for the best. We will try and keep you all updated.

Amy and Grant

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!

Swimming

This time of year I always get super nostalgic about all the fun summer activities we did! Colby has loved swimming, even getting brave and just using a noodle or floatie ring to stay above the water.