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.