HAPPY New Year!

WHEW!  We made it!  I am sitting in my living room, with my husband beside me, my tiny son on his chest, and my other 3 kids playing together (loudly) with Christmas presents on the floor.  Our TV is blaring a mindless game show, there are baby things scattered about, and the whole house could use a good cleaning.  And, my heart is FULL.  There have been times this past year I didn’t think I would feel this way again.  We are SO blessed and so thankful as we turn the page to 2012.  It has been QUITE a journey to get to this point, and we have been so loved by so many, we will never be able to acknowledge or repay everyone’s thoughtfulness and generosity.  Looking back (and forward, for that matter), I know we would have never made it without all of YOU, and we are eternally appreciative.  “Thank You” just doesn’t seem adequate.

As of right now, we have been home for 4 days.  As parents, Britt and I are exhausted.  We have had to learn so much about taking care of a preemie baby who is on a heart and respiration monitor, as well as oxygen.  This is much more intense than I thought it would be.  Add to that, we were advised by our NICU team to keep him on the 3 hour feed schedule for the first 2 weeks as he adjusts to his new environment.  So, we have all kinds of alarms set on our phones to make sure we are awake and we feed Finn at 5, 8, 11 and 2 – am AND pm!!!!  We are only sleeping for short periods of time…  We got home on Wednesday about noon, and the first few hours we spent just trying to get situated.  The home health guy came out later in the afternoon to set up the concentrator and to leave us with some oxygen tanks to keep up going.  I am thankful for my small house.  I only have about 30 feet of tubing from the oxygen machine to Finn.  That means, you can’t go far with him before either hooking him up to a portable oxygen tank, or moving the concentrator to another room.  I have had a few instances in the past few days where that frustrates me.  I hate having to leave him in the back of the house while I go to the front of the house, but sometimes moving his equipment just isn’t an option.  Add to that the monitor.  Its cord is only about 5 feet long.  Luckily, it can be unplugged and runs on battery, but the battery life is only about 3 hours.  If the battery gets low, it alarms.  If the leads on the baby move, it alarms; if the cords from the baby to the machine are loose or get unplugged, it alarms.  And the alarm? LOUD!  And startling.  Luckily, we have not had any “baby” alarms, just “equipment” alarms.  The machine would alarm if the baby has a problem if his heart rate was above or below a preset limit, or if he doesn’t take a breath for more than 20 seconds.  So far, we have not had any of those kinds of alarms. YAY!  Oh – and you know when else it alarms?  If you don’t turn it off “right.”  For some reason, Britt and I both have had a hard time remembering those instructions!  We have to turn it off to bathe Finn and to change the leads everyday… We’re getting better!

We have had a few “newborn” moments that we’ve had to deal with.  We have had some issues with Finn acclimating to the temperature of our home and maintaining his body temperature.  Doesn’t help that the Oklahoma weather has been crazy!  It was 70 yesterday!  But 3 days ago it was 40 and tomorrow it will be COLD.  We’ve had the heater on, nothing on but fans, and then even the A/C on yesterday.  SHEESH!  We were advised when we left the NICU to take his temperature every 3 hours to make sure he was acclimating.  After a bath on Wednesday, he was a bit cool, so, I dressed him, Britt warmed a hat and blanket in the clothes drier, and we put him down to nap dressed like that.  Next time we checked him, you guessed it, he was super warm! LOL!  This has gone the other way, too.  Had him swaddled, decided he was too hot, took off a layer, checked again later, he was too cold!  Day four (and a new thermometer) and we are finally evening out on this issue.  (We were using the same thermometer from the hospital as advised and taking his temp under his arm, but the leads from the monitor were interfering with this reading and saying he had a low temperature over and over and over, so we bought a behind the ear version and have had much better luck with it.)

The only super scary moment we have had was during the evening on Wednesday night.  Finn was sleeping in his bouncy seat, and it was time for his next temperature check / diaper change / feeding.  Britt got him out of the seat to get to work on him while I fetched a bottle (I am still pumping, but we chose to feed him from bottles to be able to keep track of his intake better).  I came in to our darkened living room, and Britt mentioned that Finn looked like he was glowing blue from the reflection from our big TV.  When he picked Finn up to cuddle him, I could see the baby didn’t look ”right.”  And he wasn’t just blue, he was GRAY!  I told Britt something was wrong with the baby, and we immediately flipped on the overhead light, and started rubbing Finn’s back.  Britt – the quick thinker between us – immediately disconnected Finn from the home oxygen concentrator machine and hooked him to an oxygen canister that was sitting nearby.  Finn immediately started to pink up, and after a few minutes, we decided to try to feed him to see if that would help.  Finn recovered from this episode very quickly, but now we had to find out WHY this happened to our precious baby.  Britt began examining all the equipment, and found that there was a loose connection on the concentrator.  Even though we discovered that, we still didn’t trust the machine, so that night Finn used one of our large canisters for sleeping.  WHEW!

Thursday, we had trouble with the machine maintaining the flow pressure.  Finn is supposed to be at ¾ of a liter. The machine kept falling down between ¾ and ½.  While we hope to wean Finn to that soon, right now as he adjusts to everything else, we want him to have ALL of the support he needs.  So, that day, we spent a lot of time on the canister as well – including overnight.  Friday, we put a call in to the home heath guy to see if he could help up with the problem.  He walked Britt through a few steps, and since then we have had no problems with the machine, and Finn has been able to spend his last 2 overnights hooked to it.  We have also moved it to new places in the house to see if that helps with the cord issues, and that has made the set up a little different, as well.  Having Finn on the machine more is good, because those large oxygen canisters are kind of pricey!  We went through 2 in 2 days!

Also on Friday, he had his first visit with our local pediatrician!  I was so pleased when we got there and the staff immediately put us in an exam room to get us out of the germy lobby.  SO thankful for that!  The exam went well, and she told us we were doing a good job and that Finn was PERFECT!  But, we already knew that.  He weighed in at 6 pounds 6 ounces!  Growing so well!  He does have 2 hernias – the obvious umbilical one as well as one in his left groin, but we will address those when he is older.  We don’t have to go back and see her for 3 weeks –unless we just need to!  Time to stay home and stay healthy.

The last 2 days have been pretty smooth, aside from the tiredness!  Emma and Lara FINALLY returned from Christmas with their other dad yesterday afternoon, and I got the first picture of all 4 kids in our home. 

They hadn’t been here an hour when they left to go to a friend’s house for a New Year’s Eve sleepover!  Social butterflies!  We are adjusting to being a complete family of 6.  We get dad home for one more day before he goes back to work.  My big kids don’t go back to school for another WEEK, so I will be with all 4 kids all day for the rest of this week.  Please pray for my patience! LOL!  It is a challenge keeping every one fed, entertained, clean and dry - and to keep reminding them not to step on, trip over, kink or otherwise disturb all the cords and wires crisscrossing our house!  But, I am so looking forward to it.  THIS is my purpose! 

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.

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!

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!

2 Months Old!

Today, December 5, 2011, Mr. Finn Weaver is officially 2 months old!  WOW!  So hard to believe!  He is weighing in at 4 pounds 6 ounces, and had begun to bottle feed.  Never in a million years did I think I would  have 4 children, let alone a micro-preemie with a very long NICU stay, but, here we are!  And, as you can tell from the picture, it was time to COWBOY UP this weekend and yell ORANGE POWER as loud as we could, and Finn was in on the action as well.  So, not only do I have 4 children, my Oklahoma State University Cowboys are Big 12 Football CHAMPIONS!  What an amazing weekend!  Along with all of that, Britt and I are celebrating the 6^th anniversary of our engagement!  Best 6 years of my life.  SO GLAD God led him to me, and that I said “YES!”

Since Finn is off CPAP, he is MUCH easier to “get to,” and we can hold him much easier now.  That means, other family members can get in on the action, too!  Unfortunately, my mom is struggling through a cold, and the Big Girls were off on adventures with their Other Dad, so that left Big Brother.  And boy, was he excited!  And so good at it! And just completely precious.  Jake sang songs to Finn, talked to him, and just LOVED on him.  It was adorable!  He got to hold Finn twice on Saturday and once on Sunday, and he was (almost) as excited as Christmas morning!  I think he is going to be an EXCELLENT big brother – even though he refuses to change diapers!  ;)

When the doctor had called on Friday, she had told us that the next time we were there, we would probably be able to attempt a bottle feeding.  Unfortunately on Saturday, Finn was still tachypneic (breathing too fast), so they decided to let him have another day of getting used to breathing on his own before we tried.  While we were there for the first night shift hands on, we told our nurse that if he was showing signed of readiness, they were more than welcome to try him with a bottle!  We had been told earlier in the week they would not do the first bottle without me there, and I wanted them to know I didn’t want to be the reason he was not home by Christmas!  With me so far away, and the weather getting iffy, to go ahead!  So, Finn had his first bottle at 2 am on Sunday morning!  She said he drank some of it, but then got sleepy so she finished it through his tube.  We got there Sunday afternoon in time to try again at the 2pm feeding.  He was a bit slow, but he finished the required feeding amount in just over 30 minutes.  They only want them to try for 30 minutes, but he had just a bit left, so we got to finish.  Then, I got to try again at the 5:00 feeding.  HOLY COW!  He sucked the entire bottle dry in 20 minutes!  The nurse came back in to check on us, and she was SHOCKED!  So was I!  She said there were 5 extra cc’s in the bottle, too!  WOW!  GREAT job, Finn!

We learned that overnight they attempted one more bottle, but he was pretty tired, so they were going to finish out the night with gavage feeds to let him rest.  He HAD to be tired!  He worked so hard for Mommy yesterday!  He got his hearing checked on Saturday, and one ear failed, but that is pretty typical at this point and he will get checked again before we go home.  The eye doctor was also in on Sunday, and he is showing signs of mild ROP, but they will also keep monitoring that.  And, since he is 2 months old today, they will start with his immunizations!  He gets 3 shots over the next 3 days – with Tylenol and lots of love.  Poor little guy!  But, he’s shown himself to be quite a trooper, and I know he will do fine.  So, we need him to continue to do well with bottle feeding and get more consistent, and we are also starting to wean the percentage of oxygen that he gets through the nasal cannula.  Those are the things we need to have happened to get him home for Christmas!  Keep up the good work, Finn!