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!