Changes for good!

Well, one of my worst “Mommy of a Preemie” fears came true over this past weekend. Mommy got sick!  Almost worse than not being able to see Finn for a few days, it made me worry it was going to mess up my surgery (tubal ligation) that is scheduled for this coming Wednesday!  Luckily, I used my resources, and I am currently in OKC between “visits” with my little man.  I started feeling a bit “off” Friday evening (lost my voice for a while, even), then had a pretty good day Saturday, but was worried about the upcoming week, so I texted my OB (yeah, we’re that close) and he called in some antibiotics for me that night.  I took my meds and slept all day yesterday, and I am feeling much better today!  Good enough to drive down to see my baby, that’s for sure!

Over the weekend, Finn “graduated” from his high-tech incubator “Giraffe” omni-bed (pictured above) to a regular nursery crib!  That happened overnight Saturday night, so while I was sleeping yesterday (and Emma and Lara were with their AWESOME Aunt), Britt and Jake came up to see him in his new crib!  They keep him pretty wrapped up, and with the SiPap on his face and head, there’s not much to see!  He has on his clothes (a sleeper), then a snuggle blanket thing, then he is covered with another blanket!  He’s still learning to maintain his own temperature, so they like to keep him very cuddled up.  While Britt and Jake were there yesterday, Finn got his 5^th blood transfusion.  His numbers had been hovering on the low side, and he was borderline anemic, so they went ahead and transfused him, even though tests had shown he was making new blood cells.  This just gives him a head start and keeps him on the right track.

Today when I got to the NICU, I learned that the SiPap is no longer providing breaths for him!  This is SO BIG!  All of the breaths he is taking, he is initiating.  Such a big boy!  Now, the SiPap is still in use as it is holding his airways open, but we are definitely making progress.  They checked his blood gas about an hour ago, and it is GOOD, so he is doing what he needs to be doing!  YAY!  While I still get the lovely honor of taking his temperature and changing his diaper at the hands on times, we are really at a point where Finn doesn’t need a whole lot of attention (unless he loses his pacifier!), and the time seems to drag on!  He just needs to grow!  And we know he is because he has also graduated from the purple pacifier to the ORANGE pacifier!  Or, they may have done that since the Cowboys have a big game this weekend…

I was just thinking the other day how I haven’t told the story of giving him his first bath.  Last Sunday, I was in the NICU late for some reason (like past 8:00pm), and our regular nurse was at a delivery, so the charge nurse was working with Finn in the meantime.  Well, during the hands on, she decided he needed a bath.  I was perfectly content to stand back and watch, but she INSISTED I do it, because I had admitted I had never done it before.  Well, it was quite comical.  He was still in the BOX at that time, and while they had “popped” the top for full access to the baby, at 6 feet tall, it was hard for me to bend over and reach him very effectively.  So, in the awkwardness of the moment, and trying to not mess anything up, either Finn or I (probably me), pulled out his feeding tube!  The nurse was not too pleased with me on that one!  She got what she needed to replace it, and we got on with the bath, but I was not comfortable with it, I am pretty sure Finn got very cold, and we messed up his feeding.  I won’t be doing that again until he is without all the extra wiring!

Thankful for Finn

Well, it has been a bit of an eventful few days since I last posted! Nothing too exciting, except that MY BABY DOESN’T HAVE A TUBE DOWN HIS THROAT ANYMORE!!!!!  I know the picture doesn’t show the whole story, because the “after” almost looks worse than the before, but it is SO MUCH better!  He can swallow and cough and CRY now.  All things he needs to be doing to continue getting bigger. The CPAP still supports his breathing, but it is not as invasive or as aggressive as the respirator.  The CPAP is set to a rate of 15 breaths per minute at about 50% oxygen right now.  I know that soon after he was transferred over to it, they turned the pressure up, but I don’t know if they turned it back down yet or not.  The next step is nasal cannula, which is the least invasive breathing apparatus, but we are not sure when to expect that.

I was at the hospital Monday and Tuesday.  There had been talk of removing the ventilator since the weekend, but they we’re getting the blood test results they wanted from Finn.  He was at a rate of 10, oxygen was as low as 40%, and the pressures were being turned up and down slightly every day, but he was staying the same.  On Tuesday morning, the doctor told me they would change him over Wednesday morning.  I had told my nurses and respiratory technicians (RT)  that if I was in the hospital, I wanted to see them do it.  I had also told them that I was leaving Tuesday afternoon as I needed to be home with my big kids on Wednesday since they were out of school.  So, shortly after noon on Tuesday, my favorite respiratory technician came in the room with a HUGE grin on her face, and she said, “We’re doing it now!”  I said, “NOW?!?!?!?” She replied, “Well, as soon as I get everything I need gathered up!” So, again, with the surprises!  The doctor was vacillating between leaving the tube in, and trying CPAP, and after talking to RT, decided the ventilator may have been what was holding him back, and to at least TRY the CPAP!  Here’s the video I made for Dad:

It is now Thursday morning, and he is tolerating it just fine!  He was SUPER mad at us for a solid hour after the switch, but once he got settled in and used to it, he has done just fine.  I had never seen him so active and agitated!  But of course, you would be too if the only way you knew how to breathe was through a tube in your throat and someone took it away and started shoving air in your nose to make you breath! LOL!  While I was kinda sad to see him so worked up, it was AWESOME to hear him cry!  He is working hard to come home for Christmas!  I  stayed a few extra hours just to make sure they weren’t going to have to go back on the respirator, then I came home to my big kids to start their long holiday weekend!

On Wednesday morning, I called in to check on Finn about 9am.  All was well with him – doing just fine with the CPAP.  The nurse was the same one we had on Tuesday, and we had also had her several days last week. During our conversation, she says to me “Oh! And he looks SO CUTE in his little outfit!”  WHAT?!?!?!  What outfit? He has clothes on? Whose clothes?  I didn’t bring clothes??? LOL! I knew they day was coming, as him roommate has been wearing clothes for a while now. She is bigger than him, and in an open crib on room air, and I didn’t know what the qualifications were for wearing clothes.  I found out it is 3 and a half pounds, but when Finn hit that marker, he still had a rigid tube down his throat.  So, for him, it was 3 and a half pounds, AND the tube was gone!  The nurse also said he peed all over the first outfit, so she had to get him another one!  There is a stash of preemie clothing in the NICU, and parents are welcome to bring their own.  We have set aside a few things to take with us when we go see him today.   They nurse said she wished she could send me a picture.  I’m kind of sad I missed his first day in clothes, but I will see him today – and take pictures!

On Thanksgiving, we reflect on what we are thankful for.  Simply put, I am thankful for Finn.  But that extends so far beyond just my baby and his life.  It’s the lives he has touched beyond the walls of the NICU or this home.  It is my family who have loved and supported us unconditionally through the toughest road I have ever followed. It is my church family, friends and prayer warriors who have begged God for His mercy and provision for this baby, for me, and for our family.  It is the people who have read or will read this blog and see the love of Jesus shining through and get to see how powerful a relationship with Him can be.  It is the patience, knowledge and courage that have been fostered in me personally over the last few months.  It is LOVE.  Thank you Finn, for bringing that to me, to our family, to the WORLD!

Wheels Keep Turning

I can’t believe I have let a whole week go by since I last blogged!  Finn is still taking baby steps forward.  And I do mean baby steps!  Very small steps.  Every day!  He seems to gain weight in spurts!  He’ll gain 2 ounces in 24 hours, then maintain that weight for 2 days! LOL!  As of last night, he is up to 3 pounds 8 ounces!  4 ounces from doubling his birth weight!  And the respirator is almost the same story.  We were told once we got the rate down to 10 and he tolerated it, we would get off of it.  Well, it has been at a rate of 10 for 3 days now, and he still has it.  Because, yesterday, they had to turn the pressure up. We were really ready for him to be done with that form of breathing support this weekend.  It was 2 Saturdays ago that the Doctor said we would be off in 2 weeks.  We really expected it to be gone yesterday, but late last night when I got here, it was still there.  He has been discontinued off all medications (no infections, stopped the diuretic) at this point now, and his chest x-ray was clear yesterday.  They reduced his feedings a bit (from 28 down to 26 cc’s) to help keep fluid off his chest.

Here is a little update from last Thursday for perspective:

* they started giving him some caffeine to stimulate breathing
* nurse thought he wasn't quite himself this morning so they drew some blood for testing. CBC and a CRP to check for infection.
* CBC was normal and the CRP was slightly elevated by the Dr is not concerned at this point. Will repeat a CBC and CRP in the morning.
* Blood count is a little low but not at a worrisome level. They have started him on an iron supplement.
* Blood gas was drawn at 2 and another will be drawn at 8. This is being done to continue weaning his rate on the vent.
* When we arrived at the hospital yesterday, his rate was at 22. We were VERY surprised!! This morning the rate was down to 17. The reason we are eagerly watching this number is because when the rate goes down to 10-12 ... they will EXTUBATE and we will be OFF THE RESPIRATOR!!

Friday, I got to hold him like a BABY!  Kangaroo care is great, but it is a bit awkward, you are 1/2 naked, and you have to be very still.  This was more comfortable and natural:

And again on Sunday - this time he was more alert!

I don’t know what kept me from blogging this past week.  It was a little busy, but not too bad.  Back and forth from the city a few times, my 6 week postpartum check (and pap smear – YUCK), took the big girls to the dentist, picked my cousin and her 13 month old son up from the airport, and saw Twilight Breaking Dawn Part 1 TWICE! (Don’t judge!)  But, it has been an emotional week beyond the busy-ness.  Besides all the emotional strain our family was under, my OSU Cowboy family suffered a great loss this past Thursday when a plane carrying 2 of our women’s basketball coaches went down in Arkansas while on a recruiting trip.  All 4 occupants were killed.  The pilots were OSU alums who had agreed to fly Head Coach Kurt Budke and assistant coach Miranda Serna for a recruiting trip.  I got the call early Friday morning from a friend, before the media got a hold of the story, and it truly brought back memories of the crash 10 years ago that killed 10 people with the OSU men’s basketball program.  How could it have happened again?  To our program, our school, our community?  We lost so much on Thursday when that plane went down. I knew both of the coaches from my time in the Athletics Department, and Britt had talked to Miranda about our family just the other day.  They will both be dearly missed.  While my body is in Oklahoma City today with my baby, my heart will be in Gallagher Iba Arena at 1pm when the memorial service starts.  I am wearing my orange today for them.

I am currently in the lounge at the NICU waiting for the time to come for me to change Finn’s diaper, take his temperature, and see how he is doing this morning.  His night nurse saw me in here and told me we are back down on the pressure on the ventilator, so maybe in the next 2 days they will extubate! We can only hope!  As for me, I am doing OK.  Everyone keeps telling me I look good, so I am either good at faking it, or the pace and stress I am keeping up under is making me look better to others!  LOL!  I don’t know, but I’ll take the complements.  I was just thinking this morning about how since Finn was born, I have not spent more than 4 nights in a row in the same bed.  And that was the first week when I was with my friends in OKC and couldn’t drive yet, and then again at home when I was in Stillwater for Homecoming / Halloween weekend.  WOW!  This Wednesday will mark 7 weeks in the NICU.  7 long weeks.  But so worth it!  I was told by a nurse last night that I should have him home for Christmas.  I promptly sang “All I Want for Christmas is You” to Finn.  He liked it!  So do I.

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!

 

One step forward

Two steps back.  They say it’s a roller coaster, and I know that, but it doesn’t make it any easier!  Finn is 5 weeks old today and his last few days had been pretty calm – if not boring.  Finishing up the antibiotics for the staph and e. coli.  Steadily increasing his feedings, decreasing the ventilator settings ever so slightly.  Weaning off the sedative.  Gaining weight.  Then, yesterday I was told one of the numbers in his blood tests were trending down – indicating he may need blood soon. Then, over night, they had to increase the settings on the ventilator back to where we were a few days ago.  Plus, he is out growing his trache tube, and it is causing an “air leak” (which is minor right now, and when it causes more significant problems they will switch it out).  All these little things piling up to make us have a bad day.

This morning, I was told Finn would need another (His fourth? Fifth? I can’t remember) blood transfusion today, and that his chest X-ray was “hazy” and he would also get some Lasix for the next 2 days to help pull the extra fluid off his chest.  While the new blood gets settled in, they “hold” his feeds, too.  So, his feeds don’t increase the way they were, and that means more time on the TPN IV fluid and more time with a PICC in his arm. Darn darn darn!

I was all proud of myself for not crying in the last 2 days.  That’s over!  And while none of this is earth shattering or dangerous, it’s still confounding and frustration and SAD.  The nurse had pretty much briefed me on all this news when  got here this morning, but the Doctor came in with the same news and when it comes from him (even with the severe accent and the mediocre bedside manner) it’s quite a blow.  Luckily, I had sweet texts from my husband and his supportive nature and urging to take care of myself, the day has turned around a little bit!  I am so thankful for my Fandango App on my iPhone and the “Near Me” function!  Allowed me to find a movie near me that started 20 minutes after my meltdown!

So, there is always a good side to all of this.  I got to enjoy a movie and just relax for a minute.  Finn always does better after some blood (a la Bella Swan), and the nurse said after the first hour of the transfusion he was like a brand new baby!  Plus, it is Wednesday which means is it massage day in the NICU Family Lounge, so I got a massage, too!  There’s always a good side, right?

Monday, Monday

Over the weekend, Finn turned one month old, he gained some weight, and he lost some weight.  Par for the course, I suppose!  He is doing very well, overall,just still have a long way to go!  We are so grateful for the wonderful nurses and staff  here at the hospital, and we are so appreciative of all the support we have gotten from family, friends and strangers.  We believe in the power of prayer, and we can feel the prayers being offered up for us, and our sweet baby boy!  Here’s a list of what is going on with him these days (it’s been a pretty uneventful few days, so I am just summarizing):

• We have 2 days left on the antibiotics that are treating the staph and e. coli found in his eyes and trach (tracheotomy/breathing) tube.

• He has been off the oscillator 10 days, and off the steroids for a week, and he seems to be doing well on the traditional ventilator.

• His feeds are up to 18cc every 3 hours and he is tolerating them well.  “Full Feed” for him will be 23cc and he should reach that in 2-3 days.  When he is up to that level, they will discontinue the 2^nd IV fluid and the supplementary lipids.

• He is still getting fentanyl through IV for sedation, but they are weaning it down.

• Last night they turned the rate down on the ventilator from a rate of 40 to 37, while the oxygen percentage hovers between 65 and 70%.

• Last night he weighed 2 pounds and 11.2 ounces (he was up to 2 pounds 12.8 ounces earlier in the weekend, but this fluctuation is typical.)

• Finn had his first eye exam by the neo-natal ophthalmologist on Sunday, and it came back clear for ROP.  They will test again in 2 weeks.

All in all, we are in a good pattern.  We just need Finn to grow, continue tolerating his feedings, and wean off the fentanyl.  Once he is up to full feedings in a couple of days, he will not need the PICC line except for the fentanyl, so they may change that med to something oral so we can get rid of the PICC line (and eliminate that potential source of infection).  The next goal is to get him off the ventilator.  His weekend doctor estimated 2 weeks.  He will grow a lot in 2 weeks, but the rate on the vent has to be down to around 10.

I got to Kangaroo with Finn a couple of times last week, then again today.  At first, he really doesn’t tolerate it well, but after a while he really seems to settle in and enjoy it.  I sure like it!  He is so cute and fun to watch. He is awake for 5 minute or more at a time now, so it is neat to watch him look around and see how he reacts to the noises in his room.  Time is of the essence here!  We need him to grow, but to also avoid infection and other illness.  Two steps forward, one step back.  But, slow and steady wins the race, right?

Guest Blogger Day!

Today, I am 4 weeks old!  I am weighing in at 2 pounds and 8 ounces, and I am working hard to grow, grow, grow!  I woke up this morning with some “eye gunk,” so my doctor sent it off to be cultured, and in the mean time my nurses keep slathering my eyes with some sticky ointment.  I mean, I know I can only see like 3 inches in front of my face, but now even THAT is blurry!  And my eyes are all sticky.  BUT!  My Mommy got to hold me today for the first time in over 2 weeks!  While I was on the baby shaker (oscillator), She couldn’t hold me.  It was so nice!  She even put my fuzzy OSU hat on me to keep me warm.  AND, while she was holding me, guess who showed up?  DADDY!  We were both so surprised!  He sat with us and talked with us for a long time before the nurse put me back in my bed!  (Oh - and if you haven’t figured it out, this is Finn, and I hijacked the blog for the day!)

So, I decided I should give you a little tour of my room.  The NICU at Mercy is really nice.  There are 2 sides - “A” quad and “B” quad.  (Not sure why they are called quads when there are only 2 of them, but whatever...).  I am on “B” quad, where each room has 2 babies.  My suite-mate is named Shannon.  She was born the same day I was, but her Mommy was further along than mine was.  The nurses used to call us boyfriend and girlfriend, but my Mommy told them we broke up.  The whole “Room Divided” thing wasn’t working out for us.  (They are huge OU fans; We bleed orange...)  It is usually very dark in our room, and we have lightweight fleece blankets over our isolettes, but they day Mommy took these pictures, all the lights were on.  So, here we go!

View as you walk into the room

All my equipment

From the other side

 

 

 

The "BAD BOY" oscillator (turned off)

The regular ventilator (back on)

ME!  Sleeping in my bed

So, there you have it.  My room on the B Quad.  I heard the doctor talking to my Mommy and Daddy this morning, and he said things were right on track.  I just need to grow, grow, grow!  I’m working hard at it!  We just have to keep me healthy and keep moving forward.  Thanks for reading my guest post today!