Friday, December 16, 2011

My Preemie Story Pt 2

I started writing this days ago but preschool and Christmas preparations have kept me way too busy ><

I guess this is the toughest part of my story,  the toughest part for any preemie parent really, the NICU.   There's a saying  that the NICU is a rollercoaster ride full of ups and downs.
I HATE that saying.
I love roller coasters I find them to be really really fun, and the NICU was anything but a roller coaster ride in my opinion :P 
The first person to visit our son in the NICU was his dad.  Thanks to issues with low blood pressure and pain medication after my c-section I had to wait until 2 days after my operation before I was able to make the trip to the NICU.  The pain meds affected my legs so I had no strenght to stand on them (something that wasn't supposed to happen), and the blood pressure thing... I stood up and everything went kinda woozy and black and I nearly fainted.
Anyhow, after Kiyo came back from visiting in the NICU I asked him how the baby was (being 3 months early we had not yet picked a name) hoping to hear something good.  Instead all he said was 'he's too small.'  But he told me about the visit and how he got to take pictures, how the doctor opened up the diaper to show that we indeed had a boy, how just as the doc opened his diaper he peed :).  And then his biggest surprise of all, he was allowed to touch the baby.
After this we started discussing names,  went through a few different ones Kyosuke, Seiya, Ryusei, Kaito...Eventually settling on Yosei  written like 陽星 meaning sun star.  It was also during this time that Kiyo and his mother (both devout buddhists) started telling me (the devout athiest) that I shoudl pray for Yosei by chanting namyohorengekyo, also known as the lotus sutra.  I didn't really believe it but I figured it really couldn'T do any harm so I did.  The first step in my eventualy conversion to buddhism a couple years later.
We also read over the policies of the NICU.  There were two policies I was really not fond of. 1 - because its considered a biohazard they cannot save the umbilical cord for the parents to bring home,  and 2.  There was a max 1 hour visit per day in the NICU and 1 1/2 hour visit in the step up unit the GCU.  They also had three different set visiting periods during the day you could chose from.  Completely different from the NICU's in the US where parents can pretty much camp out at their kids' incubators. 
The day after he was born Yosei's Dr. came in to let me know that his digestive system was working and they would be starting him on 1cc of milk 8 times a day.  They also asked for my permission to give him milk that some other mother had pumped until I was able to start pumping enough for him.  That was of course a big yes.  Woo finally some good news!
The pumping though....  I was already dreading it,  but nothing prepared me for what happened when I was taken to the nursing room... I was given a glass baby bottle and told to start squeein'.  No pumps,  they make you express by hand (and I thought pregancy made me feel like a cow...) I eventually ended up having my mother send me a pump from the US  as they only sell cheap crappy pumps out here (no wonder the advocated hand expressing).
Then there was the lecture they made all  new moms attend and going home with your new baby.  There was me and one other preemie mom there all the other moms had babies.  They made us watch cheesey videos on how to hand express milk and on bring our babies home.  All this talk of bringing babies home nearly made me insane,  oh how I wanted to scream at everyone who forced me to attend this thing.  I didn't even know if Yosei was going to make it through the night and here they're making me watch these things witha bunch of moms with full term babies????  The woman leading the lecture noticed my lack of enthusiasm and actually though it was maybe because I didn't speak Japanese....  You would think  the fact that I'm not toting a baby around might give her a clue....  Nearly 4 years later and I've still got a lot of anger over this.  Well, anger over that and the creepy night charge nurse that I had ended up complaining about before.  She was still just awful , she even walked into the NICU once and interrupted my visiting time to tell me I needed to go move my crap because I was being moved to a different room to make more room for pregnant women,  horrible horrible woman.
My post birth hospitalization lasted 9 days, that hospital's standard for a c-section.  I was so anxious to get out of there that rather than wait for Kiyo to get off work and come pick me up around 7 p.m. I opted to take the 2 hour train ride, alone, carrying 2 weeks worth of clothes and crap, a little more than a week out of major abdominal surgery. It was probably a little crazy,  but I needed to get out of there.  Kiyo picked me up at the train station.  And we headed home to drop all my stuff off before going out to dinner.  Upon arriving home Kiyo received a phone call from the hospital.  I though maybe I had screwed something up in the checking out process or something.  But no,  they called to inform us that there had been a measles outbreak in the maternity ward and until I could obtain a measles test to prove to them I wasn't carrying it I would not be allowed  to visit Yosei.   So it turns out  during this time there were measles out breaks all over during this point in time  and there was a ridiculous wait time to get the results for a measles test.  The fact that I was fully vaccinated (better vaccinated than most Japanese infact as they don't do the booster shots for measles here like we do in the US)  didn't have any sway over them, even though they agreed there was very little chance that I could actually get the measles.  In the end I ended up having to wait 9 days for the test results.  9 days without seeing or hearing anything about Yosei (they refuse to give updates over the phone because of privacy issues).
In that 9 days though Yosei changed so much it was surprising.
Yosei, just before I was released from the hospital
Yosei, a couple days after I was finally allowed back to visit him.

I really wish I had kept a journal during this time because from this point on each day just kind of blended into the next.  I ended up buying a 3 month commuter train pass because it was so much cheaper than buying a ticket every single day. Most mornings I would chant for a few minutes before leaving the house and making my 2 hour train trip. I noticed that they days that I took the time to do this I often got good news,  sometimes no news, but never bad news.  But the days I was just to busy, or forgot to do it there was always some setback. 
Yosei was on the ventilator for about a month, and he was doing really well atfirst but he started doing worse and worse on it,  and oddly enough the Dr. thought it was simply because he no longer wanted to be on it.  So they extubated him and he did very well on the room air, I saw his face witout all the tape and stuff for the very first time.  If I remember right this is also around the time we found out he was anemic (a common preemie problem) and they had started him on medication for this.
This unfortunately last only a day.  And while he didn't need to be intubated anymore,  he did have to wear this awful thing on his nose that made him look like an elephant.

Luckily the elephant mask only had to be used for a few days.  and at 1month 1day old (April 14th)  I finally got to see this.
It was around this time they discovered he had developed ROP or retinopathy of prematurity.  He was stage 2 in all zones of his eye meaning he was borderline for needing surgery.  I had to sign a consent form stating that they could perform laser treatment at any point in time should his ROP get even a little worse. 
Now that he was off of all the oxygen they decided he was stable enough for us to do kangaroo care with him.

Kangarooing with papa.  He had to wear a nasal cannula just incase.
Shortly after this we were moved into the step down unit, the GCU.  Babies here were no longer kept in incubators but in the plastic boxes like regular newborns.  Unfortunately because they were short on space once a baby moved to the GCU they could no longer be kangarooed since they could just be help normally.  All in all I think we were only able to kangaroo for 1 week.
 It was dring his time in the GCU that he learned to feed orally, we even practiced nursing (though it ended being several month after we got him home before he would actually be able to do it.)  We had some issues with reflux during this time, thanks to an immature tummy and valves.

A couple weeks before home coming we got the news that his ROP had cleared itself up!  And on June 5th, after 83  days in the NICU he got to bring our little guys home!

Of course bringing him home wasn't perfect, far from it. We were still dealing with reflux,  I was giving im medcation for that and anemia 3 times a day ( for 2 months).  He had day and night reversed for about a month (awful and exhausting).  Then there were the constant Dr.'s check ups checking for delays or abnormalities, monthly synagis shots to make sure he didn't get RSV.   He evenutally did grow out of all of this but it was a tough first few months.  Now this biggest thing lingering from his preemie days are his size (he's a terrible eater) and his expressive speech delay (though we were told no therapy necessary).  Now he's a happy 3 year 9 month old preschooler, that is totally wild about trains. In large part thanks to preschool he's really starting to overcome thye language, and the eating (and in turn the size thing).

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