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.

Monday, April 5, 2010

It's Easter! Om nom nom nom...

My name is Marriah and I'm eight days old. It's easter, and I get as much bottle as I want!

The doctor's wanted to try something called Propanolol, on thursday, to see if it will my heart to relax. A relaxed heart can draw more blood in before pumping it out, in this case, to the lungs. The potential result being a heart able to move more blood to the lungs without requiring PGE or some other procedure.

Daddy brought his guitar and played me some lullabies. I'm not sure what to think about that. He's an ok guitar player, as long as he sticks to the easy chords. My favorites are "Half Way Down the Stairs" and "Helleluja" which are both easy enough for daddy to play without making too many mistakes.

I also got to start drinking from a bottle, instead of getting nutrients through my I.V. That made my tummy happy. Mommy put me to breast, and I was able to suckle a little from her. I'm still figuring out how all that works. It wears me out to search around for dinner, breathe, and swollow, all in the right order. By the time We were done, I was tuckered out and breathing very fast.

The night went on uneventfully, and I met a new nurse who says she has been working at the hospital since before my Daddy had his surgery here. She says she may very well have been at my daddy's bedside during his recovery.

On friday, I got a new crib! I didn't need the auto-heater any more, since I was keeping temperature on my own. Mommy drove home the previous night to repack for a longer stay, when she saw my new diggs, she was both happy and sad. Happy to see me in a more baby-friendly setting, sad that it wasn't back at our house - which I have yet to see.

I got bumped up from 21ml of bottle to 36ml. Mommy tried to put me to breast a couple more times, but each time was more exhausting than the last. By the end of the day, I was working too hard to catch my breath, even while taking a bottle. So mommy bravely gave up trying to breast feed for now. All the while she has been faithfully pumping breast milk for me to have by bottle. Someday, I hope to understand all the sacrifices mommy has lovingly made for me.

The nurses also started changing me back from a Borg! They installed a different kind of IV called a PIC. Instead of being a short tube that runs just long enough for a hand or foot veign, they put in a longer tube that runs to a more major artery. They finally removed the (something) from my inner thigh, and the IV from the right of my head. Now I look more like a baby, and less like a cyborg.

I still have a flashing light on my right hand and left foot, the PIC in my right foot, a PIV in my left hand, and four sensors for heart rate, breathing rate, and temperature. So I have a long way to go to escape asymilation.

By saturday, I had gotten a chance to relax, and just have a bottle every three hours. By that morning, I was hungry enough for more, and I wasn't afraid to let everyone know it! I told those nurses a thing or two about how hungry I was getting. They talked to the doctors who agreed, it was time for me to go "PO adlib" which is a fancy way of saying, I can have however much bottle as I want at each sitting.

My first full bottle was devoured, and they gave me a little extra only thirty minutes later. Then only two hours later, I was hungry for another, even fuller bottle. I went from 36ml every three hours to 120ml in four hours flat. After my initial feast, I was able to settle into a full bottle of 60ml every three hours or so. I finally gained enough energy to open my eyes a few times throughout the day. I could see that my improving appetite made mommy and daddy very happy.

They started flirting again, kissing and cuddling eachother. I didn't mind, they worked great helping eachother manage me. With the morning meatings, asymilation, rotating nurses, constant appetite, and a loud cry when voicing my displeasure, I'm sure that I was a handful. Mommy and daddy left the late night feedings to the nurse so they could get some quality sleep.

Mommy and daddy visited me at six in the morning on Easter. I got an easter basket with Mickey Mouse, a pinwheel, and a balloon that said, "Get Well Soon!" written on it. Mommy and daddy said it reminds them of their third day here, when the doctors used a tiny balloon to open the blocked valve in my heart. By mid-day the nurses took the balloon away, though. They said it might combust with all the oxygen equipment close by. I hope I can have it back when I'm out of the NICU.

After mass, the doctors met with mommy and daddy and told them that I was doing well and everyone is optomistic about the second PGE weening on monday. Throughout the rest of the day, I had a bottle about once every two hours. I drank so much that I was getting flush with fluids. The nurses gave me Lasix to help me go pee-pee more often. But that meant more diaper changes; I hate diaper changes, and I am not afraid to cry my displeasure at the top of my lungs. I usually get to have mom's milk after each change, though.

Happy easter, everyone!

Saturday, April 3, 2010

I Failed a Test and it Made Me Mad!

My name is Marriah and I'm four days old. For the first time in my life I've failed a test, and I was angry.

I was feeling good in the morning, even with the low dose of PGE. The doctors decided to ween me from PGE all-together and by lunch time I was feeling pretty good for a while. What I didn't know whas I was taking a test.

The doctors wanted to see how my heart would behave without the medicine over the next day, or so. They set the targets for blood oxygen levels before the nurse should take various actions to help. The nurse watched me throughout the day. As afternoon came, I got more and more cranky, because I was feeling a little light headed.

The nurse increased my nasal oxygen dose, and used blow-by oxygen to try and help me pass the test. Unfortunately, I wasn't able to keep a passing score on blood oxygen saturation, even with the nurse trying to help.

By midnight I was feeling cranky from low saturation, which made me angry, which further lowered my saturation, which made me more angy, and so on. When the saturation got too low, it was clear to the doctor that I wasn't going to pass, this time.

The doctors put me back on PGE and I got much better very quickly. I spent the rest of the day, pretty uneventfully, but still asymilated into the Borg. They said they might let me try to take the test again in two more days, so I'll rest, and practice as much as I can.

Wednesday, March 31, 2010

It Feels Like the Flue, So They Gave Me a Balloon

My name is Marriah, I'm two days old and I feel like I have the worst flue ever. The doctors blew up a tiny balloon inside my heart and I've been assimilated into the Borg collective.

Mommy and daddy got to visit me a bunch today. They helped me feel a little better from all these people poking at me, and a case of flue-like feelings that made me feel terrible. The medicine, called PGE, that kept me alive was given to me all day long. But the side effect of PGE is it makes me run a feaver, and feel like I'm really sick. Thankfully they were able to give me much less of it by bedtime.

One of the doctors sat with mommy and daddy for a long time and told them everything he knew about my condition. The plan was to use a tiny balloon and thread it into my heart, where they would inflate it and get my misbehaving valve to open up. The doctor was very dour about his expectations. Given the state of my heart he wasn't very confident in how much of a difference it would make.

Dr "Dour", that was my nickname for him that day, took me to one of the operating rooms of Children's. Mommy and daddy were so upset, they didn't know what to do, so they kissed me good luck and went to the chapel to pray. While they were off praying, I was being placed in a deep sleep where "Dr. Dour" could do his work. He was very skilled, and very confident in his abilities. He didn't get discouraged when the first two balloons weren't strong enough. On the third try, he got it to work!

Immediately, the busted valve started doing it's job. The valve is still a problem and will have to be replaced. But, I might be three years old before we need to worry about that; that's 500 lifetimes compared to a two-day old. Mommy and daddy think my second day of life was the longest day, ever.

After the procedure was finished, I started waking up. They had reduced the PGE, which made me feel not so terrible, but still pretty bad. "Dr. Dour" was much more optomistic about things after the procedure. He had a well earned and satisfied smile from a job well done. He talked with mommy and daddy for a long time about what to expect for the next couple of days.

They planned to stop PGE, all-together, in the morning and observe me in the ICU to see how well I did on my own. They watched how well my heart did at getting blood to my lungs and, as the evening wore on, I was doing better. I was doing good enough to use the smallest dose of PGE before bed. The only real problem now was my racing lungs!

The procedure went so well that, with the duct still open from PGE, my lungs were getting too much blood! It made me breathe really fast all night long. Even so, with the lower medicine dose, my eyes became less puffy, and I finally got another chance to look at the world.

I was pretty groggy, but I looked on to a very content mommy and daddy. Everyone left with smiles and hope on their faces. We weren't out of the woods, but at least we found a trail that might lead somewhere.

Next time, I'll tell you about spending lots of time cuddling, looking at the world, and failing my first test.

Tuesday, March 30, 2010

I am the Wind, and I have a Broken Heart

My name is Marriah and I was born with a broken heart. I'm only one day old and I've already become daddy's lil' girl, and I got to fly in an airplane!

(Stay tuned to a picture of me)

Mommy gave birth to me after an uneventful, term pregnancy. I was born at about 8:00pm on a windy day and after daddy cut the umbilical chord I got to cuddle with mommy for a while. That night, I cuddled and cried with mommy and daddy, but mostly, I slept - like a new baby should. The next day, my first full day of life, it turns out, could have been my last.

(Stay tuned to another picture of me)

The next day seemed like any other first full day, but as the day wore into the afternoon, my condition had been worsening. Neither mommy, daddy, nor any of the other nurses knew I had been born with a broken heart. In a moment of serendipity, the pediatric doctor happened to be visiting the hospital.

The pediatrician stopped by, and noticed that I didn't look as flush as a new baby should. She examined my fingers and lips and toes and saw that they were slowly turning blue; a worrying sign that I wasn't getting enough oxygen into my blood stream. My family later learned I had life threatening defects in my heart. We later learned that I had these congenital heart defects:

The pediatrician was very smart and used a medicine they call "PGE," which saved my life. Had she not intervened, I may have only lived for a few more hours, which would have made mommy and daddy very sad. PGE makes the heart work much like it did when I was in the womb. I was stable, but critical; most importantly, I was ready to travel.

Mommy and daddy were beside themselves with worry. The medicine was keeping me stable, but it would only be useful for a couple of weeks; we needed to get some expert help, quickly! Even with all their fears, mommy and daddy were amazing. Mommy and I got into an ambulance with nothing more than the clothes we put on that morning. The ambulance took us to the airport where a medical flight was waiting to take us to Seattle. The flight was bumpy, but the pilots made the landing feel soft and smooth. Lastly, we rode another ambulance to Children's Hospital.

Back at home, Daddy could not contain his tears for my well being. But, even through teary vision and fits of worry, he packed bags for mommy and himself. He made arrangements for my home, and my doggy, both of which I haven't seen yet! Daddy didn't know what to expect, and bravely drove on towards uncertainty, doubt, fear, and worry. Daddy even gave up all of his poker winnings, from that month, so he could have cash for necessities while visiting Children's Hospital, in Seattle.

Grandma and grandpa, mommy's parents, came over too. I was placed in the Neonatal Intensive Care Unit where they gave me an ecochardiogram, which is a fancy word for an ultrasound of the heart. The doctors and nurses connected me up to all sorts of tubes and wires. With all the lights, wires and tubes, I looked like how I imagine a baby Borg would! Since I'm a newborn baby, and everyone else were adults, I found that resistance was futile, and that I was going to be assimilated, dispite my most vocal refusals. Eventually, I settled into my new bed at Children's where mommy and daddy met with the doctor, a neonatal cardiologist, who was able to explain what went wrong.

Thanks to a little luck, a lot of medical talent, and a seemingly never-ending amount of faith, I made it through the night alright. Although, the PGE makes me feel like I have the worst flue and I'm still very cranky, at almost everyone, for assimilating me into the Borg.

Coming up, I'll tell you about my second day. A day of pokes, prods, exams, and baloons (but not the kind you think); all while feeling miserable all the time...