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.

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?

10 days on this planet

It was 10 days ago that my little Mr. Finn joined us!  I am sitting in the back seat of my parent’s car as we whiz down I-35 on the all too familiar drive between Mercy and Stillwater.  We have just spent the evening with sweet Finn – he is now topping the scales at 2 pounds and 1.5 ounces!  He is also tolerating the new oscillating ventilator he was put on last night – but more on that later.  When we got there tonight, he was on his tummy with his tiny little tush up in the air – my favorite!  We missed the opportunity to change his diaper and take his temperature by a few minutes, but it was still worth the trip to just to stare at him and marvel at his development and accomplishments.  We love watching him try to grab for the tubes and wires he has around him, as well as stretch those tiny feet and legs.  Plus, he tried super hard to raise his chin!  He is so strong and such a fighter!  Since it has been ten days, (technically, he was born on the 5^th and today is the 16^th, but it WAS almost midnight, after all!), I decided the best way to chronicle the roller coaster events was to just list the highlights, so here we go!

Thursday, October 6

• My sister-in-love had surgery scheduled for early that morning across the street, so she and her husband were the first visitors Finn had!

• At 9:00 am, they were making me move rooms (with all my STUFF I had accumulated thinking I would be there much longer) right in the middle of my morning meds, my family arriving, and the lactation consultant visit!   WHEW!

• My Mom and Dad came down to meet their newest grandson, and they brought Emma, Lara and Jake to meet their tiny baby brother.

• The first two interventions for Finn (besides IV fluids for nutrition) were the ventilator (which at this point was at very low settings for a baby of his size!), and 3 banks of the blue photo therapy lights used to fight the bilirubin levels in the blood that cause jaundice.

• Britt stayed overnight in the WORST hospital recliner EVER!

Friday, October 7

• This day, we were blessed with a lot of visitors!  Some with early birthday presents for me, some to meet Finn, and some surprised to learn of his birth!

• As we knew he would, Finicky Finn lost some weight, but was doing all the things a micro-preemie of his gestational age should be doing.  Nothing scary; nothing too worrisome.

• I did have a little breakdown mid-morning when I felt like I had no idea what was going on with my son.  Britt called the NICU and got our nurse to explain a lot of things to us.  It was just a case of they didn’t know what we didn’t know, but this conversation was so revealing and reassuring!

• My Mom and Dad came again this evening to love on their sweet grandson, and to celebrate my birthday with me.

• Several of my girlfriends from my LifeGroup brought birthday dinner, birthday presents, baby presents, and LOTS of love for both me and Finn.  It was so fun to introduce my sweet babies to  all our visitors today, but especially to these women who have shown so much support over the past few months.

Saturday, October 8

• Happy 37^th Birthday TO ME!!!!!

• I was told by the rounding physician that I could go home today, but I really wanted to stay another day, so I asked, and received!

• My amazing husband and kids came down to spend the day with me, and they decorated my door and room with party decorations a friend had sent earlier in the week – pre-baby!  It was super festive and fun!

• Britt’s parents came over from Enid to meet their grandson.

• We had LOTS of birthday visitors, again!

•  I got my PICC line out – what a relief!

• Finn’s night nurse for this evening turned out to be a childhood friend of mine!  Such a joy to know he is in such good hands and with someone who cares about our family personally!

Sunday, October 9

• This morning was ROUGH.  Knowing we were being discharged, but leaving our most precious family member there was not a comforting feeling.  Add to that some confusion about hospital grade breast pump rental, and I was an emotional mess

• Britt and I both broke down as we left the parking lot!  So hard to leave my tiny baby behind, but there were other kids at home who had not had their mom for months.  It was a hard decision, but I know I made the right one.

• Once we left the hospital, we stopped by Target for a few things I needed, then on to Babies R Us, as we had to buy a breast pump!  The rental fiasco had left me leaving the hospital to go home without a way to harvest milk for my baby boy.  Nothing a few hundred dollars won’t fix, I guess…

• When we arrived (finally) in Stillwater, I asked to be dropped off at my parents’ house so they could “baby” me while Britt ran a couple of errands and gathered our kids up from where they stayed for the day.

• SUCH a joy to have my 3 big Dream Weaver kids with me in a comfortable environment!  I really cherished this evening with them – even if I was trying to recover from major surgery!  So happy!

Monday, October 10

• Today, I “moved in” with my friends who live close to the hospital in the city.  They are so gracious to let me stay and to let me go, too.  And, since I can’t drive, they take me everywhere, too!  I am one lucky Mom!

• Trying to get into my “new” routine.  Hard to sleep, still on lots of pain meds, pumping 7-8 times (including in the pumping rooms at the hospital outside the NICU) a day, trying to spend as much time with little Finn as possible.

• Finn has lost a little more weight, but has evened out.  He is also still under 3 banks of photo-therapy lights for the jaundice.

Tuesday, October 11

• I had a rough morning – not looking forward to spending the WHOLE day at the hospital again, not knowing what to expect with Finn, missing my husband, my kids, my home…

• BUT!  ***I GOT TO HOLD MY SON!!!***  This was my first session of “Kangaroo Care” with my baby, and I held him for about an hour.  Made this morning’s meltdown all worth it.

• My milk had also finally come in, so I was finally pumping enough to feel like I was contributing to Finn’s nutrition – even though he wasn’t even using it yet.

• And, after I held him, they removed the blue lights!  SUCH a great day! (Let the roller coaster begin!)

Wednesday, October 12

• One week old TODAY!

• In celebration, I had cheesecake with my lunch in the hospital cafeteria (my daily stop for nourishment!)

• I also got to Kangaroo Finn today for about 3 hours.  Pure BLISS!

• Finn received his first blood transfusion today.  He is so small he can’t produce new blood as fast as he is using it; plus add to that all the nurses draw for tests and such.

• Speaking of blood tests, they saw some markers in his previous tests that indicate he might be starting to fight an infection, so they started him on broad spectrum antibiotics.

• As a result, they are starting a blood culture to see what kind of infection he is fighting.

•  And, one back of the blue lights is back.  :(  WHEW!  Busy Finn day!

• Happy News is that I caught a ride back to Stillwater for the night and got to have dinner at the Hideaway with my LifeGroup!  SUCH great fellowship!

Thursday, October 13

• My mom wanted to see Finn, so after we dropped the Big Dream Weaver kids at school, we headed back down to see the baby.

• More Kangaroo care this afternoon!  I held him about 2 hours today before he got too wiggly and needed to go back.  Put a new fun white cap on for this session!

• Finn had gained back up past his birth weight , weighing in at 1 pound 15 ounces

• Finn started breast milk feedings today!  0.5 cc’s every 4 hours.  The nurses call it “half a drop!”  If he tolerates it well he will get more  - today was just to see if his guts were working, not so much for nutrition

Friday, October 14

• Dad was not feeling well this morning, but came down and hang out with his wife and son after a nap!  We went out for lunch together and it was so nice.

• Since Finn was tolerating milk well, his feedings were increased to 1 cc (a FULL drop!) every 4 hours.

• Dad got to experience his first Kangaroo Care session!

• Unfortunately, it was cut short as Finn was not tolerating it well.  The nurses and doctors had already determined that Finn’s body was not changing the oxygen he was taking in into carbon dioxide like it should, and the numbers were higher than they wanted them.  So, they started making adjustments to his ventilator to see if they could help him with that..

• We left the city to get back to our other kids thinking they would find the right combination of pressure, oxygen and repetitions to get him going again soon.

• Ran by Babies R Us to finish up our registry there before we got home to the other kids!

• Got to our home to find his birth certificate in the mail box!

Saturday, October 15

• Woke up to a Saturday morning with my kids!  Finished our registries by going to Wiggles and Giggles downtown, had Eskimo Joe’s for lunch, and then loaded up the whole gang and headed to the city to see Finn!

• We were met by some fun visitors, but this whole time, we knew things weren’t quite right with Finn, his breathing, and his blood gas. 

• After some fun brother pictures and an opportunity for the girls to love on Finn, we went to Target to finish up our registry there.

• One last trip in to see Finn, and we were greeted by the doctor to talk about Finn’s issues.

• The changes made to the ventilator were not changing the blood gas numbers, so they also started Lasix to see if that would help.

• We left asking for more prayers for Finn, knowing they had found his chest tube to be too small and had switched it out.

• The numbers were still not correcting, so they decided to switch him from a traditional ventilator, to an oscillator.

• By 11pm, his numbers were on the rise!

Sunday, October 16

• Called early to check on Finn, and his numbers were up again! PRAISE!  The oscillator was working!

• Enjoyed a lazy morning with the kids and went to church and lunch like a normal family!

• My parents wanted to go see Baby Finn this afternoon, so I rode with them, too.  We enjoyed our time with him, even though the oscillating ventilator was noisy and a bit scary, and it make Finn look like he was shaking.  But, we know it is what he needs, and his numbers still continue to look good!

• Feeding amount is up to 1.5 cc’s every 4 hours!  He is tolerating it well and digesting it!

• His weight is up to 2 pounds and 1.5 ounces!  YAY, Finn!

I am hitching a ride back to the city EARLY tomorrow morning!  I could probably drive by now, but I don’t feel ready, and this weekend Britt and I are getting a little “vacation” courtesy of our LifeGroup.  It is Fall Break for our schools, our kids are all taken care of, and he and I are spending the weekend in a hotel, hanging out with Finn, and getting re-acquainted with each other!  (NOT like that – I just had surgery, but it was in a Catholic hospital and they didn’t do my tubal ligation!)  We still covert your prayers.  We know this NICU ride is a roller coaster, and we have really just begun!  Thanks for letting me share this journey with you!