Rooming In

It is 6:00 in the morning, and I just spent my first full night with my son!  We were “on our own” for the night, and it started out a little rough! But more on that in a minute!  First, I have to tell about our Christmas celebrations and the way our family made a hard time for everyone into a special one!

Last I blogged, it was Thursday.  That was the last day of school for the kids before a 2 week break.  I spent the day running errands all over Stillwater, attending Britt’s work holiday lunch, Jake’s winter class party, and finishing up preparations for the weekend and week ahead.  Friday morning, we got up, and the Five Dream Weavers loaded up in Derek and headed to see Mr. Finn.  The kids were excited since they hadn’t been to the NICU in a few days, and we spent the whole day up here on Friday.  Saturday, our Christmas extravaganza and present palooza started!  We got up that morning and began cleaning the house a bit, and then Nana and Grandpa came over for the first round of gifts.  It was super fun since these were the first gifts the kids were opening, so they were OVER THE TOP excited.  Emma, Lara AND Jake  all got Fijit Friends, so OF COURSE, all the friends went with us to the hospital:

After my parents left our house, we came to Mercy to see Finn.  We realized we had never gotten a picture of all four of our kids in the same place.  It was time to remedy that situation – and here is the result!

We didn’t stay with Finn too long, as we had to get back to Stillwater for Christmas Eve with my grandparents.  We had a nice turkey dinner, and after dinner all the big kids were running and laughing and playing – having a good time!  UNTIL!  Jake puked all over me, the couch, the living room, himself, and the even the bathroom by the time Britt got him there!  This put present opening on hold until Britt could go back to our house and get clean clothes for me and Jake.  While he was gone, Jake was stripped down to his underwear, and running around playing again.  We attributed the puke to the fact that he ate 18 Krispy Kreme donut holes AND a whole donut on the ride home from OKC.  The kids all got clothes from my grandmother, so the presents weren’t as exciting (to the kids), but I sure am thankful for the new duds!  When we got back to our house, the kids donned their new pajamas, set out sushi for Santa, and listened to Dad read “’Twas The Night Before Christmas” and went straight to bed!

Sunday, Christmas Day, started out with just the five of us, in our own living room. The kids tore into their stockings, opened the gifts from Mom and Dad, and played their little hearts out while our traditional breakfast of Birthday Cake for Jesus was set out.  Between playing with their new toys, they kids HAD to get dressed – there was STILL more Christmas to come!  (One of my Christmas surprises? Starting my first post-partum period!  Between that and the puke the night before, I was thinking the universe was against me!) When we got them all moving, we headed to Aunt Paula’s house for a few snacks, and MORE PRESENTS!  It is so fun to watch kids open gifts!  They all got some great gifts – including Finn – and then it was off to the hospital in OKC again! We had a glamorous Christmas lunch of Lunchables and Capri Sun in the car as we drove…

We spent the rest of our Christmas day with Finn, and took a Christmas picture to celebrate:

Nana and Grandpa came by for some Christmas Day hugs – Finn style, and we all spent the afternoon just hanging out!  Britt made a special snack of Ranch Oyster Crackers for the staff, and it was a HUGE hit!  Emma and Lara were picked up by their other dad at the hospital for a week with him, so we left that night with just ONE baby!  Monday morning, we got up super early and came back, as we were meeting with the nurse practitioners for a FINAL plan – to bring Finn home on Wednesday!  We spent most of the day Monday with Finn.  His big adventure for Monday was his circumcision!  My mom came down for one last NICU cuddle with Finn, then she took Jake back to Stillwater with here so we could have more time with our baby boy.  Later that evening, we left without our baby for the VERY LAST TIME!  We headed home to a dinner out with family, then getting things ready at home!  Tuesday morning we cleaned the house as best we could, dropped Jake off with my parents, and drove to the hospital for the VERY LAST TIME to get this “rooming in” thing started.

We had to be at the hospital by 4:00pm to meet with the home health company representative to learn about the oxygen and monitor we will be taking home.  We actually got here a little before 2 (after a “last meal” of sorts at Pei Wei), and got to feed Finn that bottle before starting our next class.  And we were definitely schooled!  MAN!  That was a lot of information in a short hour!  It went by so fast!  So glad Britt is a GREAT listener, and the monitor came with a manual!  WHEW!  The room wasn’t quite ready yet when we were done, so we did Finn’s 5:00 hands on in our old room.  This is when we disconnected him from the NICU monitors, and hooked him up to the home ones.  CRAZY stuff!  Then, we wheeled him down the hall to the “Rooming In Room.”  In here, there is a full size bed, storage, a mini-fridge, sink, TV (on an A/V cart with a DVD player AND a VCR!  Kicking it old school!), and the regular NICU medical equipment.  It’s a bit crowded, but it works.  Once we got all set up, it was our turn to show what we’ve learned!

About an hour after we moved down here, Britt left to go to a cupcake shop in Edmond that we frequent.  We have become friends with the owner, and she had told us to come get the leftovers to share with the NICU staff.  The staff was ONCE AGAIN thrilled with their treat from the Weavers! Normally, they have 1-2 dozen cupcakes left over.  Last night for some reason, they had TONS!  Britt brought 72, but that’s all because his box was full! LOL!

At the 8:00 feeding, we were getting things all settled in for the night.  I had planned on blogging after that feeding and before getting some rest, but Mr. Finn Weaver had OTHER plans.  Like, cry for THREE HOURS other plans!  Poor Baby!  We were all pretty miserable!  This is a baby that never cries!  He had his first RSV immunization shot this morning, so I thought that might be bothering him.  Or his circumcision, but we had given him Tylenol with his last feeding, so it should have been working by then!  At the two hour mark, I was convinced it was the new monitors – it had to be poking or pinching or something, so I stripped him down.  That didn’t help!  We stood, we walked, we rocked, we sat, we lay down, we sat up, we traded him back and forth… Finally, about 30 minutes before his next feeding, we gave in and pushed the nurse call button.  She came in, assessed him, and decided it was probably gas.  She thought we should try a swing and see if that helped work it out.  After lugging a HUGE monster of a swing into our already crowded room and trying him in it, we discovered Finn doesn’t like the swing!  This baby was so miserable!  So, we fed him the 11:00 feeding, and the nurse got a vibrating bouncy seat to try.  He liked this MUCH better, and actually slept in it until the next feeding.

The rest of the night went MUCH better!  I got up to feed him his 2:00 feeding, and Britt slept through most of it.  Glad he got some rest so he can drive us home later!  I woke him up with me for the 5:00am feeding since I needed to make the bottle this time – it wasn’t ready ahead of time like the others (we are feeding him fortified breast milk and supplementing with NeoSure).  So, we tag teamed the 5:00 feeding, and now we are just waiting for the day!  I went down the hall to return my breast pump before I sat down to write, and the unit is so quiet.  Shift change is at 7, and that’s when Dr. Scott is due here to check Finn’s eyes one last time before we go, so things are starting to get busy around here!

I cannot believe we are taking him home in just a few short hours!  There are only a few things left to check off on his discharge check-list!  WOW!  This is REALLY happening!  From the snoring coming from the bed in the corner, sounds like Dad is resting up for the drive home!  Can’t wait to see what this day brings!

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.

The "A" Quad! (Guest Blog by Finn)

This last 24 hours has been quite a ride for me!  First, my Daddy was here with Mommy all day yesterday, and I was so happy to see him!  I love hearing his deep voice and he knows just how to hold me.  While he and mommy were here, one of my nurse practitioners came in and they talked for a long time all about me!  Mommy said I’m the kind of kid you have to just push into the deep end and tell them to swim!  I’m not sure what exactly that means, but it sounds kind of scary!  Then, Daddy AGREED with her!  He told stories of me being in the NICU about how I get to a point then don’t get past it until they push me pretty hard – like they had to to with the fentanyl and the ventilator.  While I’m not sure what all that means, I do know that after they all talked about that for a while, and they talked about me being past the 37 week mark, the NNP turned the flow down on my machine to 3.0L and 100% oxygen.  Mommy and Daddy were so excited!  Didn’t make me much difference at all!  They stayed with me till mid-afternoon, and I was sad to see them go, since they know just how to feed me my bottles!  I’m getting really good at it!

Not too long after they left, the nurses came in and started gathering up all my things – they told me I was MOVING!  Where? To the A QUAD!!!!  While I am still looking for the other 2 “quads,” I hear they call this new place the “high school” of the NICU.  Even though I am a freshman on the hall, I have a lot of friends who came over this week, too, so I’m not too worried about it.  My new room is smaller, but I am the only baby in here, and there is more storage for all the clothes, gifts, and stuff my Mommy keeps here for us.  It was fun to take a little ride in my crib down the hall and around the corner!  My nurses told me all about my new digs while we walked.  I hear it’s kind of a big deal to be here, so I am excited!  Plus, I got the best room in the place – first one as you walk into the unit, so I get to greet everyone!

I had a good first night in the new room.  I have a window right above my bed! It’s nice to see the daylight streaming in.  My Mom and Dad, as well as my sisters and brother showed up late this morning.  Mommy and Daddy were surprised when they got here that my Vapotherm was at 3.0 liters and 83% - they thought they would leave the oxygen at 100% and just wean the flow.  They asked the nurse about this, but I was doing great with my numbers either way.  Mommy fed me a bottle (with a little help from Jake), and then I heard them talking to another of my nurse practitioners.  She explained that there are a few schools of thought on the Vapotherm settings, and she likes to do it this way.  She told them she would turn it down to 2.5 liters of flow tomorrow.  Again, no idea what that means, but Mom and Dad seem excited as it is one step closer to home.  The NNP also said I had completed 82% of my bottles by mouth in the last 24 hours. Mommy said that’s a “B” and she’ll take it!  

The next time I needed a diaper change and a bottle, Mommy was off pumping more milk for me, so for the first time, Daddy did my whole hands on by himself and fed me my bottle!  I love it when Mommy does it, but is sure is special when Daddy’s here!  Emma, Lara and Jake all took turns holding me, singing to me, and reading books to me all day long.  Mommy fed me one last bottle (after figuring out that the first nipple we tried didn’t have a hole in the end) before they had to go home for the night.  

MAN!  What a great day today was.  One nurse even said I might still make it home for Christmas.  Mommy said she’s fine if I don’t, but I am going to keep working hard!  I’d sure like to be home for when Santa comes!  I hear that’s pretty cool!  But for now, I am happy to be here in the “Big Boy Nursery” working hard on my breathing and eating.  I’ll be home soon enough.

If not for Christmas…

…by New Year’s night…?

After all these whispers and questions and comments about Finn being home for Christmas, including more yesterday, Britt and I finally got up the nerve to ask a doctor – the only ones who can tell us for sure.  And no, Finn won’t be home for Christmas.  While we are a bit disappointed, we can’t help but be thankful for how far he has come!  The doctor told us yesterday that 9 out of 10 babies with his exact circumstances (25 week gestation birth, under 2 pound birth weight, 7 weeks on a ventilator, etc) would not be faring as well as he has.  Everyone is still really shocked at how well he has taken to the bottle.  He just needs more time to grow bigger and get new pink lung tissue to help overcome the chronic lung disease.  It just takes time.  And patience.

So, now we are hoping for the end of the year.  I know that’s only a week out from Christmas, but for insurance purposes, that would really be helpful.  Of course, we want him to be as healthy as possible before he joins our crazy household, so we will do what the doctors advise us to do, but we sure could use some BIG prayers for a New Year’s Eve homecoming!  That will be some kind of party at midnight if it happens!

We were able to go back to bottle feeding yesterday.  I fed him a bottle at 8, 2 and 5.  His 11 o’clock feeding we gavaged since he was SO asleep all the prodding and noise we were making didn’t even cause a stir.  He was kind of fussy after the 8 o’clock feeding and stayed awake for quite a while, so I guess he was just worn out.  I told Britt I gave him a C+ for that first bottle.  He gulped and held his breath a lot for the first half, but then got the hang of it again and did well.  He gets a C- for the 2:00.  He kept de-satting (his oxygen saturation level goes below the desired level and makes the alarm go off), so we stopped a lot, but he still drank the whole thing in the 30 minutes allotted.  Then, the 5:00 he got a solid B.  Did well; his sats only dipped twice – and neither time set off the alarm.  He just needed to get back in the swing of things!  Sounds like he did about the same overnight, as well.  Back on the right track now!

While his breathing and oxygen levels are getting better, it is a slow climb.  His machine last night was set to 3.5 liters per minute of flow, and early this morning it was at 78% oxygen. That’s down from the 4.0L and 100% we had Tuesday night!  He has to get down to 1 L to come home.  He will be at 100% at that point, but that’s the flow they need for him to be comfortable at and still converting the oxygen as needed.  There is no telling how long that can take, but late this morning they turned the flow down to 3.0 and his oxygen up t 100%! We are THRILLED with this development.  He just has to keep getting new lung tissue every day and keep working on his bottle feeding to get better.  The nurse practitioner (that changed the oxygen settings) told us to GET READY!  So, we have signed up for the final NICU parenting class, as well as infant CPR next week, so we can be ready!

Today, Britt is getting some cuddle time in with his son.  Long overdue!  It’s been a crazy week!  Loving the holiday season, and being able to celebrate our own little miracle.  At the same time, glad to see the tumultuous year of 2011 come to a close.  Bring on 2012!  I now know I can survive just about anything that’s thrown at me!

Feels Like Family

10 weeks.  70 days.  We have been on this incredible, unbelievable journey for 2 and a half months.  We have been here long enough that some of the other parents of preemies feel like friends, and the staff is almost family.  I can’t walk down the hall on our side without a handful of “Hello” and “How’s Finn?” greetings passing my way.  Although that’s a comforting feeling, it still seems a bit surreal.  WHY are we here in the first place – let alone being here long enough to feel this way about the people we are encountering on a daily basis?  We’ve laughed, we’ve cried, we’ve persevered!  But today, we felt a little more deflated than usual.

I got a message from the mom of Finn’s roommate in the early morning hours saying they had gotten a middle of the night call from the NICU doctor, telling them their baby was not doing well, and would need to be transferred from our home here at Mercy to OU Children’s hospital for exploratory surgery.  YIKES!  The other mom and I both arrived at the hospital at the same time this morning – about 7:30 – and met up at the scrub sink.  When we got to our babies’ room, our nurse greeted us both, but the emphasis was obviously on our roommate.  Poor baby girl!  She had a very rough night – scared the whole staff, and was in for a crazy day today.  Transferring a baby to another hospital is QUITE a job!  There was tons of prep work and paperwork that our nurse had to do, so Mr. Finn and I were kind of left to our own devices.  Luckily, I have been there awhile, and I knew what to do!  ;)  Shortly after 9:00, a crew from NeoFlight came in the room with all of their (big, scary looking) equipment, and it took almost an hour to prep and move her out of the room.  I cannot even BEGIN to imagine how scary this is for her parents.  They were both there this morning, and you could tell this was a terrifying ordeal for them.  Their baby girl and Finn were both born on October 5.  We have been together this whole time.  The room feels so empty this afternoon.  The mom promised to keep me updated, and we are facebook friends, so I know this is not the last I have heard from them.

In the meantime, Finn is improving.  Slowly, but we’re getting there.  He OFFICIALLY hit the 5 pound mark last night.  Wooo Whooooo!  Five Pound Club!  I think we declared it a bit prematurely Saturday night after the blood transfusion, as she was retaining a lot of fluid at that time.  But last night, he was 5 pounds, 1.5 ounces.  I got a call from the nurse practitioner yesterday morning, declaring we had a PLAN for Finn to get him over the plateau and back on a forward track.  She had researched his history on diuretics, and discovered that made his pH gets out of balance; too much alkaline.  He had the obligatory Lasix after his blood transfusion Saturday - as has been the protocol for all the other 5, but then the medication had been extended over the weekend as well.  Come to find out, he does not tolerate the diuretics well!  Not only does it make him have alkalosis, it makes his blood saturation levels drop – which is the exact opposite of what we want!  So, no more diuretics.  Also, she ordered an echo cardiogram for yesterday afternoon to check the pressure in his heart and lungs.  While he was showing no signs of any complications like this, she wanted to rule out any issues there that could be treated with medications. We got the echo results this morning, and it was perfect!  So, no worries there.  She was also wondering if perhaps he was aspirating with his bottle feeds.  So, to make sure that was not the case (again, not showing any signs of this, but wanted to make sure), she is holding his bottle feed for 48 hours – doing all his feeds by gavage.  This also gives him some time to rest and recover from whatever has been bothering him.  So, we are still doing that today.  He roots around at each feeding time, so I can tell he misses the bottle, but we’ll get back to that tomorrow, I’m sure!  And the 4^th part of her plan?  Patience.  Yeah, I know.  Easier said than done.  I ran out of that a little while back.  I think we all have.  The pressure cooker at home has exploded a few times in the past week or so.  We are all just ready for a more “normal” life.  With Finn home.  He just has to get bigger and better!  He has been weaning pretty steadily on his oxygen again with this new plan, and he is ACTING so much better!  And the report I got this morning the nurse practitioner indicated that we are headed in the right direction again. WHEW!

Here is our sweet boy today:

Finn - 10 weeks old

With all the overhead lights on during the transfer, you could really see how much ORANGE there is in Finn's hair!  Shocking, really.  And, it is getting so long!  I enjoyed our extra cuddle time while all the chaos was going on in our room.  At one point, there were close to 20 people in the room, plus, her old crib, the isolette she was in over night, the transport gurney and isolette, a ventilator (just in case) plus chairs and other equipment!  WHEW!  I was holding Finn close to keep him safe during the confusion.  We both benefited from it, I think.

It just takes time.  We’ll see how the next few days go – in his single room – and hopefully we can keep moving forward.  It is obvious now that he will go home with supplemental oxygen.  But the question remains, how MUCH oxygen, and WHEN is he coming home.  Seems almost silly to worry about when his friend is across town struggling so much.  Prayers all around for these two precious babies!  And everyone close to them - we all need it these days!

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!