Friday, January 20, 2012

It's Been a Whole Year?!

My name is Marriah, I'm twenty-one months old, and I have a broken heart... sort of.

When I first started my journey in life, I had a very broken heart. With Severe Hypoplastic Right Heart Syndrome, Critical Pulmanory Stenosis, and a Ventrical Septal Defect, I had a lot of challenges to overcome in my first few days of life.

Over the most critical part of my heart-growth and development, daddy posted those old blogs, as a coping mechanism and to keep people who were interested in the ongoing progress. Then, suddenly, the blogs petered out, around a year ago.

The main  reason, is that my condition had improved to the point where frequent updates were no longer needed. Well, now I'm happy to report that my heart has improved to the point where updates will be very rare indeed. I still have the DA Stent, and the DA is slowly occluding. The Doctor is letting this happen intentionally and naturally, so my heart can slowly grow into, and adjust to being a two-sided heart.

I've been going to regular appointments with the Doctor at Children's, and he has declared that my syndrome has improved so much that he characterises it as Mild Hypoplastic Right Heart Syndrome. Kids with Mild HRHS, rarely need open heart sergery, and only occasionally need catheder procedures as we get older. The current forecast, subject to change, is that I might need a catheder procedure to patch the Ventral Septal Defect, and a pulmanory valve replacement.

Mommy brought video of me playing "soccer" around the house, which just happens to be the Doctor's favorite sport. When he saw that, he smiled from ear to ear. Some of the nurses come and say hello, even if they aren't involved in my doctor visit that day.

This whole year has been pretty eventful. Daddy got a new job and we all moved from our large house in central washington to a large apartment in western washington. And by "large apartment" I mean that it's large by apartment standards, but much smaller than the house was.

Mommy had a hard-time adjusting, at first; but because of Daddy's job, mommy gets to be a full time mommy. This makes me very happy, even though my wilfulness is often difficult for any one person to contain. Occasionally, I go to day-care for a couple hours at a time. I fuss a bit when dropped off at first, but within a few minutes I get involved with the other toddlers and have lots of fun.

It may be a long wait until daddy writes for me again, since, as far as anyone needs to know, I'm a regular toddler with a mild heart condition that, for all intents and purposes, requires just a little more watchfulness for signs of trouble than any other child my age. Even so, any trouble signs for me at this point are the same kinds of trouble signs for perfectly healthy kids my age. And, any conditions that are worrisome aren't likely to advance any faster than a like aged healthy child.

So keep sending your good wishes; although my heart started out broken, it hasn't slowed me down at all...

Tuesday, January 18, 2011

I Got No Strings...

My name is Marriah, I'm nine months old, and I was born with a broken heart. The surgeons have cancelled my open-heart surgery all-together; which means that my heart has developed better than anyone realistically thought it could.

I just returned form an appointment in Seattle with the surgeons. They had been planning on doing open heart surgery to expand and patch the Pulmanory Valve. Later, after a year or more, the surgeons thought that I might still need a Glenn. Well, the surgeons told me, today, that they couldn't do any better than what my broken heart has already done to adapt and heal itself. I still have a squidgy Pulmanory Valve, and diminished capcity from a Hypoplastic Right Heart, but it's capable enough that surgery is just as likely to cause more trouble than improve anything; so they cancelled surgery all-together, barring any major incidents. If I make it to age five without surgery at all, I will never need one.

In the mean time, I've learned to crawl, and eat in a high-chair. I can stand, too, as long as I brace myself on something; which I spend a fair portion of my day doing. I'm still growing, and learning, and doing all sorts of fun stuff. I get excited and speed crawl across the floor when daddy gets home after work. He usually scoops me up and flies me around the room for a bit, before dinner each night.

Mommy has been making 2000 cranes; 1000 for the health of her brother's first born, and then 1000 for my health. She never did get my 1000 done, but I think that her sacrifice of the first 1000 cranes for the health of another, even though I was at higher risk, just might have bought her a boon from heaven. Keep me in your prayers, I'm living, crawling (soon to be walking) proof that prayers are answered!

Friday, September 24, 2010

Maybe Surgery, Maybe Not

My name is Marriah, and I'm six months old, and I would like to know... Who the heck is Glenn?

During my six months of (mostly) wonderful life, I have been to the doctors many times. Up until the last appointment, talk of a Glenn Procedure, an open-heart surgery, was a matter of "when," not "if." During the latest appointment, my doctor was not longer certain that I would need a Glenn.

The specific Glenn proposed is to directly connect the Superior Vena Cava to the Pulmanory Artery. Normally spent blood, from the body, enters the right atrium on its way through the heart before heading to the lungs to be oxygenated. In my case, with Hypoplastic Right Heart Syndrome, the right ventricle isn't very efficient at moving blood to the lungs. In my case, the doctors had planned to take the blood coming from my upper body, through the superior vena cava, and skip the right heart, going strait to the pulmanory artery. Spent blood would still come from my lower body through the right heart, to the lungs.

Well, lately, the doctor is no longer certain that I need a Glenn at all. I still have a substandard right heart, but it may be adequate. Some may wonder, "Well, if it's substandart why not go for the surgery anyway?" Good question, and the answer is pretty strait forward; the less you mess with the heart, the better off you are. If my condition provides a heart that works well enough, then we're going to leave it alone.

In the mean time, I'm still being a normal baby. I've figured out how to roll around, I get lost in navigation sometimes, but that's because I haven't yet figured out how to crawl. Soon, though, probably too soon for my parents to be ready. Mommy feeds me a solid meal almost every day. I get so excited when she does!

Lastly, I got my tied up tongue fixed. It was a quick snip, a little pain, hardly any blood, and it was over.

Things I like:
Sitting with mommy or daddy and playing baby games.
Sitting with a couple toys.
Getting tickled.
Eating baby cereal.

Things I tolerate:
Taking a bath.
Getting my diaper changed.

Things I don't like:
Being hungry.
Being too full.
The part between taking a bath and before cuddling with mommy.
Getting stuck (by rolling or falling from sitting into an akward position)

Tuesday, August 10, 2010

Delays and more Delays... Which is good!

My name is Marriah, and I'm four months old. I see the doctors less frequently, and every time I do, they decide to wait longer and longer for my next appointment.

Every appointment I go to, in Seattle, the Doctors are very pleased with how my health is doing. I'm consistently putting on weight, and becomming more interested in the world around me. This all means that my body and brain are getting plenty of nutrients and oxygen.

Each visit the Doctor reassesses my heart condition to determine when the next procedure or surgery should occur. And each time, I see them, I'm doing well enough where they push any procedures off until later. The longer they can delay any interventions, the better my long-term health will be, which means fewer invasive procedures.

Monday, June 14, 2010

One and a half hearts

My name is Marriah, I'm two months old, and I get so sleep in my very own room!
Over the past several weeks, I've grown. I'm putting on healthy weight and length, and the doctors are not overly worried about my neutritional needs right now.

The ductus arteriosus is slowly filling in, even with the stents, but the my doctor expected that to happen. What he didn't expect was how well I maintain my blood saturation levels as the DA closes. So it looks like we will be able to put off open heart surgery longer than initially thought. My open heart surgery will come in three to six months, depending on many factors. The later, the better, though.

In the mean time, I get to be a normal baby, doing normal baby things. And, if you ever get a chance to visit, I'll strike up a baby conversation - I love to "chat!" I'm sleeping in my very own room now. Mom and dad set up electronic monitoring so I can still wake them up if I need something. Mostly, I sleep peacfully through the night, sometimes waking mommy up for an early breakfast. Daddy helps too; he will get up early on the weekends so mommy can sleep.

The next update is probably a month or more off, but don't forget to help mommy and daddy save up for travel expenses! Mommy needs to stay at Ronald McDonald House, in Seattle, during the the surgery.

Friday, April 30, 2010

I Finally Made it Home!

My name is Marriah, and I'm three weeks old. I have finally been removed from the collective, and am living at home.

Sunday was pretty uneventful. I failed my third and final PGE trial, so the doctors out me back on PGE. I rested, ate, and spent lots of time with mommy. Good thing I ate a lot, because the next day was starvation!

The doctors decided it was time to put in a stent to open the DA. If succesful, I would be able to go home in a couple of days. The bad news was the need for anesthetics, which meant I couldn't have anything to eat. By late afternoon I was very angry, and even more hungry. I was being starved like a cow, leaning up for the slaughter. By evening the doctors realized they couldn't do the stent until late the next day. After all that torture, I was finally able to eat... until early tuesday morning.

The whole time I was off PGE again, so the DA could close to the size they wanted. There was frequent monitoring with echocardiograms. By tuesday morning, my blood was no longer my own; I had to have a blood transfusion to keep my oxygen saturation up.

They starved me fore a few hours before going to the cathederization labs. The doctors threaded a catheder line through my heart into the Ductus Artery, where they placed four metal stents to keep it open. And then they watched to see how the stents settled. They weened me off of oxygen by bed time, and I was doing well.

Wednesday was a lot of ultrasound exams, but by the end of the day, I had been completely de-borgified! No more arterial catheder - no more PIC line - no more PIV - just an o-sat sensor on my hand and resperatory / heart rate monitors taped to me. By thursday morning all that had been removed, and all I needed was a periodic check from a nurse.

So, on Thursday, it was time for a road trip. I finally got to see my home, after nearly three weeks in NICU! I got to sleep in my own bed. Mommy and daddy were beside themselves with joy that I was finally home, after seemingly forever. That is to say, for me, it had been forever; I was 19 days old, and lived every one of them in the NICU at Seattle Children's Hospital.

So, I really got to appreciate my first full day at home. I had a good appetite, feeding often, without taking too long or expending too much effort. Mommy even took me for a walk outside, in my own stroller. Saturday was a good day to turn three weeks old, where I celebrated my second full day at home. By the end of Satuday, mommy and daddy were beginning to adjust to their new life at home with me.

Now I get to be a baby, at home, like any other, and this makes us all very happy.

PS - daddy setup a paypal account for donations toward my hospital bills. He's not one to ask anyone for anything, but if any of those lives he has touched, through his friendship or ministry, could help; any little thing will go a long way.

Saturday, April 10, 2010

Three Strikes, Time to Intervene

My name is Marriah and I'm two weeks old.

On monday, the doctors started to ween me from PGE again. I was doing well all the way through the day. I've been eating everything in sight and getting stronger and more feisty by the minute.

By tuesday, I was holding my own without the help of PGE, but I did need oxygen to help. Daddy went to our home, which I still haven't seen, for a few days. He was sad to leave, but had to help his company get some software design work done for local farmers. I was still doing well by bed-time.

Wednesday morning, however, the doctors didn't like my lowering saturation levels, even with 100% oxygen, and put me back on PGE. This time, I had gone much longer maintaining acceptable saturation. So the doctors decided to try again on thursday.

Thursday went by pretty normally. My saturations were good, my temperment was good and the doctors were cautiously optomistic that the third time might be the charm. Mommy was doing everything she could to help keep me calm for the trial. She even slept in my room with me that night.

I started oxygen therapy again on Friday, and daddy came to visit that evening. He stole mommy away for a while to treat her to a home cooked meal he made for her. As soon as they were back from dinner, daddy got to give me a bottle and played his guitar for me. I overheard the nurses tell daddy to take my mom to bed, because she hadn't been very restful the night before. I didn't see them again until early saturday morning.

By the wee hours of saturday morning, my saturation levels had fallen, again. I had to be placed back on PGE, but the nurse used half of the previous dose, this time. The doctors came and talked briefly about what the next step would be.

Since I have failed three trials the doctors will have to do an procedure of some kind. The most likely is a DA Stent procedure, by catheder, to keep the PDA open. Another possibility is a BT Shunt, which would require surgery. The doctors prefer to avoid surgery because of the higher risks in surgery. It will be a few more days before they can do either.

Mommy and daddy are in good spirits about it, mainly because even through all of this time, I have gained appetite and strength. I spend a good amount of time awake and alert, just looking around at all the flashing things, and faces I see.