Most wonderful time of the year!

Things have been moving along at a hectic pace the last few days!  I love this time of year because there is always something going on and something to do, but I hate it for that same reason!  Due to all the loose ends I am trying to tie up before the end of the year, plus Christmas parties, shopping, to do lists and keeping my family moving forward, I have not been able to stay down in the city with Finn like I have been doing.  So added to all the other hustle and bustle are countless trips back and forth to the city to try to bond with and take care of my boy, while still making Christmas special for the rest of my family.  Plus the stress of all the unknowns about bringing a preemie baby home.  WHEW!  I know we will look back on this time in our lives next year and it will just be a memory, but right now, it feels like I am in the last 5 miles of a marathon that I didn’t train for!

As for Mr. Finn, he is just 5 pounds 10 ounces of amazing!  He is really loving being over on the A wing and is doing very well over there.  He is now a bottle champion, and because of that, he got his feeding tube removed early yesterday.  That means he has nothing invasive in his body anymore!  He is still on oxygen support with a nasal cannula from the vapotherm.  As of last night, he was on 2.0 liters at 100%.  His test numbers yesterday were good enough that he could have been weaned to 1.5L, but he was scheduled for a (routine) MRI of his brain, so they wanted to leave the support up in case the testing caused any stress.  For an infant MRI, they sedate them slightly, put in some ear plugs, and will them to lay still! Finn came through his just fine!  He’s a pretty relaxed baby anyway.  We did hear about one of his friends on the ward that failed hers on Tuesday – she “freaked out” and was screaming.  Poor baby girl!  They re-did hers yesterday as well, and she did great!

While we were there yesterday, we learned that there was a “leak” on the 6^th floor Tuesday right above the B Quad of the NICU, which led to some major ceiling damage – right outside Finn’s old room.  So, the NICU was in a tizzy today!  They moved the most well and stable babies from the A quad to pediatrics on the 5^th floor, then, they had to move all the tiny babies from the B quad over to the A quad.  This is not ideal, but they are hoping with the B wing empty, they can get that ceiling fixed quickly and be back in business.  I feel so bad for the staff – it is QUITE a mess.  Luckily, Mr. Finn did not have to move.  I guess if he weren’t on so much oxygen, he might have gone to peds…  Anyway – this is a mess for the nurses, and I feel bad for them.  At one point, the nurse practitioner was at Finn’s bedside, and her phone rang.  She told us to hold on, as it was one of the nurses “out on Survivor Island!”  This has been nothing if not an adventure during my 4.5 months at Mercy – domestic situations, tidal waves… What next!

Britt and I spent yesterday getting schooled on bring our preemie home.  In the morning, he and I, as well as my mom, went to a class to get infant CPR certified.  It was just the 3 of us in the class, and it went really well.  I feel better knowing this information as I bring my baby home. While my mom came on back to go to work, Britt and I hung out with Finn as he got ready for his MRI.  (I just realized I didn’t get a new picture of him without the feeding tube!  It was a crazy day…)  We each got to hold him and cuddle him and feed him, which really makes my day complete.  We also made a quick Target run for stocking stuffers – so Christmas shopping is officially DONE!  While Finn was at his MRI, we went to our last NICU class.  We got a lot of our questions answered about bringing him home, but we still had quite a list left for our nurse practitioner as well. We met with her later in the afternoon and got all of our questions answered, including THE BIG ONE.

We are (currently) set to bring Mr. Finn Weaver home to Stillwater on Wednesday, December 28!

He has a lot left to do to make that appointment, but we are confident!  We has to pass his hearing test, get one more eye test, start his RSV series, get circumcised, pass his car seat test, and most importantly, wean down off the vapotherm to regular oxygen.  I will stay overnight in his room with him Tuesday night, and that afternoon, the home heath people will come out and train us on the monitors and home oxygen he will go home with.  The morning we are discharged, he will get his hospital pictures taken!  SO EXCITING! Today, I have to make his first appointment with the pediatrician here for next Thursday or Friday!  YAY!

So, the hash tag is officially changing. We are planning a fun Christmas for the big kids, including some Finn time.  And we are praying he continues to improve, so we can have him #homefornewyears.

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!

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!