All Babies Cry

Some babies cry A LOT!  FRW would trend toward the latter category, I would say.  Wikipedia defines infantile colic as a condition of a healthy baby in which it shows periods of intense, unexplained fussing/crying lasting more than 3 hours a day, more than 3 days a week for more than 3 week.  I’m not sure we’ve been dealing with it for 3 weeks yet, but 3 hours 3 days a week qualifies.  Some days less, but it’s still there.  “They” also say it is usually in the early evening, and Finn’s tends to be from about 8pm to about 11pm.  But I’m calling it colic.  Emma has THE WORST COLIC EVER, so I am an experienced mom, and I know what this is.  It’s colic.  And it’s so frustrating for us all!  I also know it will end as abruptly as it as started, so we will survive.  In the meantime, my heart breaks daily as my sweet baby cries and cries for no evident reason.  Poor little dude!

In the meantime, another week has gone by.  Jake’s Power Rangers party was changed to a Star Wars party at the last minute since I couldn’t find party supplies locally, and it was a GREAT time at the Oklahoma Wondertorium!   We had never been there, and it was so fun and the kids and adults all loved it!  Jake got loved on by so many people, and his room is now full of fun new toys to keep him busy.  Also, the RSV shot situation has been resolved.  Last Friday, I got the 2 phone calls that got that ball rolling, then on Monday I was informed the medication was overnighted tome to show up on Tuesday, as well as the name and number of our home health nurse.  The meds arrived at 1:30 on Tuesday, and the nurse got here about 4:00 to administer the shot.  It was about 4 days late, but we are approved for the next few doses so it won’t be so hard next time!  My dog is still gone, and I am still sad about it.  Britt found us the PERFECT puppy on Craigslist earlier this week, but it was spoken for before we could get ahold of them, so the search continues.  And I am still jobless.  I am happy to be here at home for the time being, and I am determined to enjoy it.  I still feel like a puppet on a string in this area of my life, but it is what it is, and God’s plan will prevail.  I just need to be patient and prayerful and the answers will come!

Our big excitement of the week was the follow up article the O’Colly did on Finn and the OBI blood drive.  I was contacted about the possibility late last week, then this week a photographer came to the house on Monday, then a reporter interviewed Britt and I separately (due to the home health nurse and RSV shot) on Tuesday. On Thursday morning, the front page of the Daily O’Collegian featured a HUGE picture of me and sweet Baby Finn! 

CLICK HERE for the link to the article.  I think they did a really good job.  Donating blood is a simple thing to do and it can affect lives on so many levels.  We are so grateful for all the strangers who have helped us out along the way.  Whether praying for us, supporting us financially, and especially those who donate blood regularly to provide for needs of people that need that kind of support.  If it were not for the generosity of other people, Finn might not be here with us today!

As of the nurse visit on Tuesday, Finn weighed 8 pounds, 14 ounces and was just over 20 inches in length.  He is growing so quickly these days!  He will be 4 months old on Sunday, and his adjusted age is 4 weeks.  It seems like we just came home a few days ago, but he has been home 1 month and 6 days.  In the past week, he has started to sleep a little longer during the night.  We used to feed him 3 times overnight, and we are down to 2 – or just one depending on how the schedule goes during the day, and how early we need to get up the next morning.  THIS is a major milestone for me, as I really need my sleep! LOL!  He still eats every 3 hours during the day, and still sleeps A LOT during the day as well.  My mom and my sister-in-love are thrilled that they have both gotten to see him with his eyes open for more than a few seconds at a time lately!  He finally enjoys his swing, and he likes to lie under his play gym and watch the things hanging above his head.  He is still on supplemental oxygen at ¾ Liter for 24 hours a day, as well as the heart/apnea monitor.  I am REALLY hoping to change some of these statistics when we go for his 4 month visit to the pediatrician on Tuesday. This is my prayer request!  We NEED to start weaning the oxygen as he keeps pulling the cannula out of his nose, and I am SO OVER the heart monitor that only goes off with false alarms.  UGH!

The other project I am working on now is for the 4^th grade STATE NIGHT at Emma and Lara’s school coming up in a few weeks.  Each student is assigned a state, and they have to do a report on the state as a famous person from that state – as well as a report on that person. The person reports were due last week, so now we are working on the STATE part – as well as costumes.  They are supposed to dress up as that person for the presentation on State Night.  Lara has the state of Nebraska, and the famous person she chose was Swoosie Kurtz.   This costume will be pretty easy.  Lara has the perfect looks for this character, so we just need a “red carpet” dress, and perhaps an award to carry.  Emma has the state of New York.  Her “person” she chose is StefaniGermanotta.  Lady Gaga.  Yeah, we had to ask the teacher if that would be acceptable. It was, so now I am on a costume hunt!  I got a dress that I think will work perfectly.  Now for a wig, some shoes and other accessories. WHEW!  I can’t wait to see how this turns out for both of them!  They are pretty excited!

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!

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.

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

First, the good news

The good news is, Britt and I, as well as the rest of our family, are so incredibly blessed, and we know we owe our Lord all the glory for that!  Over the weekend, we were loved on and showered by some amazing friends.  Finn has a whole new host of new things he needs, things we wanted him to have, and things others wanted him to have – all given with love!  One guest even blessed and surprised Emma, Lara and Jake by bringing some fun trinkets for them as well!  I want to thank the AMAZING ladies of LTC, along with my dear, “old” friends Rachael and Tara for making it a super awesome party, and for everyone who came and made our day special!  (The opening picture is of the cake, the diaper cake, and the painting we were presented with!)  Looks like I will have some thank you notes to write over the next few days…

And the GREAT news is, Finn is doing SO WELL! He now weighs 3 pounds 2 ounces, and he is just over 16 inches long.  (I guess this is an “up” on the roller coaster ride…)  When I walked into my son's room mid-morning today, all the pumps were turned OFF! No IV's (fluids, meds or otherwise) and the PICC line is gone from his arm! Hallelujah!  He looks so FREE!  Like he could just TAKE OFF!  I took advantage of the freedom he must be feeling to partake in some Kangaroo care this afternoon, too.  I held him for almost 3 hours, and he tolerated it SO WELL!  So much better than he ever has.  Plus, during the 3 “hands on” times I was there for, he didn’t ”de-sat” (decreases in his oxygen saturation levels) the way he normally does!  Early this afternoon (while I was holding, in fact) the rate on his respirator was turned down to 31 (from 33 – it was in the 40’s last week), and the oxygen percentage was turned down to 58% (down 65% earlier today, and down from 70% just a few days ago).  SO EXCITING!  They had been weaning him off the phentanyl (opiate sedative) very very slowly, and they introduced oral morphine yesterday to take its place.  He tolerated that well, so that was the last IV medication he was on, so they discontinued that last night, and pulled the PICC line this morning!  He has not had morphine since 5:00pm yesterday, and he is actually doing better OFF the sedation meds!  (Maybe that was holding him back all along?  He was just too comfortable to work hard?  Just a thought… We’ll never know…)   Here’s to a few more days of an up-swing and more weaning from the respirator!  Here is a picture of him sucking his thumb (his new favorite pastime) while I held him this afternoon:

Some more great news?  The Oklahoma Blood Institute is hosting a blood drive at OSU this week!  It is the Bedlam Blood Drive and it is a little friendly competition between Oklahoma State University and the University of Oklahoma to see who can collect the most donated blood.  We are encouraging everyone we know to donate, and you can donate for Finn!! If you are on campus, you can donate between the hours of 10-5 today thru Friday. Kerr Drummond North Dining Room or the OBI bloodmobiles parked on Athletic Street. Get a free t-shirt, get entered into the drawing for Bedlam tickets and tell them you are donating for Finn Weaver!  Finn and Mom even got a little SHOUT OUT in the Daily O’Collegian today.  (Click the link to read it!)  Rumor has it, there will be a full length feature story on Finn Weaver coming up later this week!

And, for some super fun news?  My Oklahoma State University COWBOY Football team is 10 – 0, and is ranked #2 in the nation!  We won our game this past weekend by a margin of 60 points, which led to a 40% discount on all clothing in the Student Store today!  I made the obligatory trip to the Student Union this morning – arrived at 8:02, shopped till about 8:20, finally paid and left about 9:15!!!  WHEW! Britt said he walked over about 4:00pm, and the lines were UNBELIEVABLE, so he left!  It’s a GREAT time to be a COWBOY!  GO POKES!