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!