Finn Firsts

Not much to report on the Finn front today.  We seem to have hit a plateau.  Things started trending downward with his blood work last Wednesday, and by Saturday he needed a blood transfusion - his 6th.  During the blood transfusion, they hold his feeds, so not only did he get an IV for the blood, but also for IV nutrition as well.  While he was looking kind of cute with a hep lock in each hand poking out over his blanket, I know it’s not comfortable for him.  Typically after a transfusion, Finn perks right up and takes off in the right direction.  But, he has been pretty sluggish since this last one came about.  He is having trouble taking all of his feeds by bottle, he’s lethargic, and he is relying heavily on his oxygen support.  All these things are not getting us home any time soon.  He’s not worse, but he’s definitely not better.  And we’re not moving forward at this point.

All this frustration, plus the holidays, missing my brother, all the cars I use to go back and forth having some kind of issue and grounding me in Stillwater for the next few days, and flat being worn out brought about a massive pity party by yours truly this morning.  Somehow, I managed to drag Britt into it as well, I’m that good.  So, to try to perk myself up, I made a little movie of some of the new things Finn has done in the past 10 days and uploaded it to YouTube:

The blood transfusion also caused him to retain some fluid, so (as I suspected) the declaration of being in the 5 pound club on facebook Saturday night was a bit premature.  He weighed in at 4 pounds 15 ounces last night after 3 doses of Lasix, so I think that is a more accurate representation of his weight.  We should hit the 5 pound mark tonight, though.  Another big milestone, for sure!  Now, if he would just perk up and make some forward strides!  Still praying for a Christmas miracle!

Home, home, home

Such a little word, with so many meanings.  Right now, I am home.  I am in the physical dwelling where my possessions and family reside.  The place where I hang my hat.  Where my heart is.  Or at least, most of it. But, a big part of it is still 70 miles south in a darkened NICU room where my (not quite so anymore) tiny baby is waiting to come from that home to this home.  So he can be home for Christmas.  We all want to go home, and home is different for everyone.  Home from work, home from vacation, home from deployment,  home for the holidays.  HOME.  While I desperately want Finn home, it’s scary to leave the only one he’s ever known.  It’s like his birth, all over again.  Leaving a home that is safe, comfortable, reliable, and KNOWN to go to another place, that while it is safe, comfortable and reliable, it is a GREAT unknown.  A whole new set of circumstances and lessons to be learned.  A new family dynamic.  A new life that God has entrusted to US – we are so unworthy of all his blessings!

Today, we reach another milestone in the long list of NICU moments. Today, Finn’s gestational age is 36 weeks.  It’s almost funny to think I really wanted to stay on bed rest this long.  I can’t imagine STILL being in that bed.  I know I would have done it, if I could have, but God had other plans.  The last couple of days in the NICU I have heard whispers of “home.”  I had a nurse talking to me on Tuesday about signs to watch for when I am bottle feeding Finn at home.   Yesterday, my nurse asked me if we were OK if Finn had to go home on oxygen.  Later in the day, the NICU nurse manager asked me when we were going home – to which I replied, “I don’t know.  You tell me!”  The parents of our roommate asked me when we were leaving for home, and my nurse said he still has some time to serve.  But, those are all new whispers.  I am anxious to ask a doctor this weekend and see if we can narrow that down a bit.  HOME!

Meanwhile, while I am at home, I have other Mommy things to be doing.  Jake’s parent / teacher conference was last night.  We learned that while he is bright, and smart, and helpful, and caring, he has some self-control issues he needs to work on.  Like not pestering his neighbors.  Yeah, we know!  He pesters his sisters at home ALL THE TIME!  We’re working on it.  I also told his teacher he has been the baby, and treated as such, for 5 long years, and bringing Finn home may be a rude awakening for him.  While he is excited to have his baby brother home, I’m not sure Jake gets how much time and care Finn will need and how it will affect him.  Also, Emma and Lara’s 4^th grade classes are sang the Fifty Nifty states song at the Friday Assembly this morning.  It was great to be at the school and just be their mom for a minute – not worrying about a homecoming.

Finn is at a gestational age of 36 weeks today, and weighed in last night at 4 pounds 11.5 ounces. This is day 65 in the NICU.  He had 5 of his 8 feedings by bottle 2 partial by bottle, and 2 totally by gavage in the last 24 hours.  His oxygen went down slowly throughout yesterday, but is still pretty high support.  His blood work today was slightly elevated from last time, so this morning they changed the type of nasal cannula he has to see if that helps.  Depending on census in the 2 NICU wings, he may move to the “A Quad” (less critical babies – one to a room) as soon as they wean his oxygen settings some more.  After that? Home. e He

The thing about a roller coaster is…

...What goes up MUST come down.   I am sitting by my son’s bedside on this cold Wednesday morning, getting in my cuddle time and just being awed by God's grace.  It was 18 degrees in Oklahoma City when I got up early this morning.  BRRRRR!  It was a frigid drive in to the hospital, but I was really looking forward to getting here to see my 4 pound 10 ounce, 16.25 inch long ROCK STAR miracle baby boy! Handsome Finn earned his rock star status from the day nurses yesterday when he took all 4 of his day time bottles through a nipple!  And did it so well for such a little guy who had been on a ventilator for so long!  The Nurse Practitioner told me that that being on a vent so long usually causes some oral aversion that makes it hard to learn nippling.  Our Finn caught on right away!  But, as things go in the NICU, it was not a straight forward journey to get to that point.

When I last blogged Monday morning, we were riding the high from an AMAZING weekend.  Finn had a GREAT Sunday, and a good overnight.  But, Monday he struggled.  He couldn’t keep his oxygen saturation up, he was super sleepy (which was probably to be expected since he worked SO HARD on Sunday), and he was just generally having a rough day.  I stayed in Stillwater during the day on Monday to do some business, so I didn’t get to the hospital until about 6:30pm.  When the night shift started, the charge nurse basically told me we started Finn too early on the bottles, and that we would have to wait another week (!) for him to get going on the nipple feeds again.  I didn’t right then, but later when I was holding him, I cried.  I hadn’t done that in a long time. When I told Britt the news, here is what he wrote on Finn’s community page Facebook wall:

The immunization issue was that the night nurse told Britt she had already administered the shot, then when he called the day nurse to check in, she said she was about to do it.  When questioned, she said it wasn’t charted if the night nurse had actually done it.  He told the day nurse not to do ANYTHING until she was sure the night nurse hadn't done it.  A follow up phone call a while later revealed the night nurse had done it, and had charted it, it was just not where the day nurse expected it.  In the meantime, Finn has not had the other 2 immunizations yet, as the hospital has run out of needles.  Yeah, me either.  I have no idea.  I just hope they get it solved soon!

SO BUMMED (about the bottles)!  We had so much promise fed to us since he did so well with those first few bottles! I left the NICU about 9 that night, and went to stay with my friends here in the city.   I didn’t sleep well, and I was just FRUSTRATED! But I got up early and got to the hospital, knowing I could hold my little man.  When I got here, the night nurse, the day nurse, AND the night charge nurse greeted me at his bedside.  At first, I was a little shocked and scared, but they were all smiley and happy.  The story they told was that basically, Finn had the “POOP OF THE CENTURY” overnight!  He had a full bath at 11 with new bedding and new clothes, and after that poop display in the wee hours – which filled 5 diapers, weighed 100 grams, got on the wall, the bed, and the Vapotherm (machine that heats and humidifies the oxygen) – he got ANOTHER full bath, new bedding and new clothes.  WHEW!  And, the best news was, after he got all that out, he was doing SO MUCH BETTER!  All of his numbers improved, as did his mood and attitude!  SO PROUD of him!  So, the charge nurse told our day nurse to go ahead and try a bottle at 8 to see how it goes.

8:00am – drank it all in about 20 minutes.  11:00am – drank it all in less than 10 minutes.  2:00pm – drank it all in about 15 minutes.  5:00pm – drank it all in about 20 minutes.  All of these feedings were with no de-sats, and minimal episodes of tachypnea.  Those were his 4 day feedings.  Thus, ROCK STAR!  8:00pm – drank it all, but it was slower and l could tell he was pretty tired.  The night nurse had pretty good success as well; she got him to take the 11:00 bottle, and most of the 2:00am and 5:00am bottles – had to finish them through the tube.  This morning, he took about ½ of his 8:00am bottle for me, but he is super tired!  He had blood work this morning as well, so he has to be worn out.  His nurse and I have decided that we won’t even try a bottle at 11:00, just to let him rest a bit!  All the nurses are so impressed with him – as well as his Doctors and the Nurse Practitioners.  ROCK STAR!

So, here we are, back on track again for a Christmas homecoming.  I have taken to using the hash tag “#homeforchristmas” on Twitter when I tweet about Finn’s progress.  Helps me keep the goal in mind!  Bottle feeding is going well, so now we need to continue with good days, good growth, and weaning the oxygen he is on.  Since I have been here this morning, his oxygen percentage has gone down 10% - that’s GREAT since it didn’t move at all yesterday!  One thing at a time, right?  Go, Finn, GO!  My little Rock Star!