He's Outta There!!!

This is Dr. Crichton "Char" she was the doctor who wrote the discharge orders.

Rooming in went great!  Crew passed his car seat study . . . barely!  He has several medications and a home apnea monitor . . . but he's outta there.  Terrel couldn't get out of there fast enough.  His weight was 7 pounds 6 ounces today.

Enjoying fresh air outside for the first time

Napping outside in the shade . . . after breaking out of jail.

"Rooming in"

Our little boy is "rooming in" tonight.  What is "rooming in" you ask?  It's when babies get to stay with their parents in a separate room overnight.  The room is similar to a hotel room with a queen bed and TV and bathroom . . . except the babies are still attached to a monitor that is remotely reviewed by a nurse 24/7.  Parents get to do all the cares and medications and pretend like they are at home.  Crew got his NG tube out this morning, so he now has to get all his medications by mouth.  

He's doing great . . . except for some periodic breathing and "brady" spells.  The doctors  decided it was a good idea to stop his Caffeine yesterday.  Well, he wasn't ready!!  So, it got restarted today and now we have to wait until it gets back in his system to help stop the "apnea".  Hopefully by tomorrow he'll be back to himself.

SVT???  I suppose you're all wondering about the SVT.  Well, since we don't like to say it out loud . . . I won't,  I'll just let you read it . . .  NO SVT SINCE SUNDAY!!!  Flecainide and Sotalol seem to be the recipe we were looking for.  If no SVT through the weekend, and if he remains off his oxygen, and if his "spells" subside . . . we could be looking at discharge early next week.

Crew will need to pass a car seat study.  The nurses will secure him in his car seat and run a test strip of his heart rate, breathing pattern and oxygen levels for 90 minutes.  This study is done to make sure that he can breathe in the position he will be sitting in.  If he does well in the car seat he will be in the clear for take-off!  Since he will be going home on an apnea monitor, his mom and dad will need monitor teaching . . . should only take an hour or so.  Then, they will also have to get all his prescriptions filled.  Holy cow . . . are we really talking about going home?

Once the little bugger is at home, he will be in strict quarantine.  No visitors that are sick or are living with anyone who is sick.  Especially, no viral or respiratory infections!  Anyone who does visit will need to WASH, WASH, WASH their hands upon entering the house.  Did I mention the importance of hand washing?  Because of how sick his lungs were at birth, and because he just recently came off his oxygen . . . if he gets a little cold . . . it could land him right back in the hospital.  

Crew weighs 7 pounds 1 ounce today!  He's growing like a weed.

Kissing his momma before feeding time

He got his two month immunizations yesterday.

Just being cute!

Six Pounds, Eight Ounces Today!

Where do I start?  First,  I'd like to mention that my sister (Crew's mother) . . . I won't mention any names . . . is still avoiding me when I try to teach her how to take over this blog.  She conveniently avoids me or simply ignores me when I try to show her how to do it.  So, when the blog is not updated daily . . . you can blame it on her.  By the way, I warned her that I was going to Rat her out.

So, Crew was started on the combination of Flecainide and Sotalol Wednesday night.  Thursday he had a bad day . . . as I reported in the last post.  Well,  Friday we had no SVTs!!  Hurray!!  Wait . . . did we dare to celebrate this wondrous occasion out loud???  He actually went about 32ish hours without any SVT. We thought for sure that we'd finally found the recipe for him.  However, Thursday night . . . according to his nurse . . . he was very fussy and restless.  Then, Friday he continued on with this same behavior.  He just wasn't acting himself at all.  He started having a lot of apnea spells and dropping his heart rate.  He also seemed to lose his appetite.  We were worried that the Sotalol was causing an upset stomach and increased heartburn.  Or perhaps even worse, maybe he was getting sick.  The doctors ran some lab work and did x-rays just to make sure . . . nothing looked too concerning.  They also gave him another bolus of Caffeine.  By late Friday afternoon he was back on the Oxygen.  So, no SVTs that day, but a little boy who just didn't act right.  By bedtime Friday evening he was eating better and his "spells" had subsided greatly.  We're hoping that all the fussiness was just from a "gassy" belly.

Then Saturday mid-morning, things started up again.  He had about 7 SVT episodes throughout the day.  On the positive side, he only had to receive Adenosine once . . . the other 6 episodes converted with vagal maneuvers.  Seriously, are we ever going to figure this out??  His mom was completely beat by the end of the day.  So, now he's having SVTs but acting more like himself . . . what?  They increased his Flecainide again.

Today, I'm afraid to even report how well it went.  It seems like whenever we celebrate things, he has a set-back.  That . . . ladies and gentlemen . . . is the roller coaster ride of the NICU.  He only had one SVT episode late morning, and converted himself while breastfeeding.  He came off his Oxygen during the night shift last night and was did well all day.   He is now on a maintenance dose of Caffeine . . . getting it daily.  His periodic breathing is way better and he's having just a few minor "spells". Because of the events of Saturday, the Cardiologist decided to also increase his Sotalol.  He weighs 6 pounds 8 ounces today.  He's back to his "smiley" self and eating like a horse.  Can we shoot for maybe 3 or 4 days without SVT please . . . or perhaps even forever???

Thinking about how to escape the NICU

"Are you going to feed me or do I just have to
 sit around here looking cute all day?"

A much happier boy this morning

"Smile if you love me . . ."

Another Day . . . Another Medication Combination

Well, we were very hopeful that the Flecainide was going to do the trick.  It seemed to be working, as the SVT episodes were only lasting a few minutes and maybe once or twice a day.  Then yesterday afternoon, Crew's little heart went into SVT and stayed there for almost two hours.  None of the usual vagal maneuvers worked, so the decision was made to place another IV for Adenosine administration.  However, after three attempts and no success at IV placement, he finally converted . . . on his own.  Crew does "fine" during these episodes.  He came off his nasal cannula yesterday and is on room air doing great. When he is in SVT his oxygen saturations are typically 100%.  He's also wide awake and looking around.  He just gets worn out after a couple hours with his little heart racing at 250 beats per minute. They've been placing bags of ice water on his face for 20 second intervals in attempt to create a "gasp" and decrease his heart rate. Poor guy, he takes it like a champ.  It actually worked this morning . . . most of the time it doesn't.  He otherwise gets his nose suctioned, saline drops in his nose, knees-to-chest, or rectal stimulation.

So, last night the Cardiologist made the call to once again try yet a different approach.  They cut his Flecainide dose in half, and added Sotalol.  These two medications supposedly work well together, but have to be in lower doses.  Unfortunately, because of the decrease in Flecainide, and the fact that it's going to take at least 5 doses of Sotalol for it to truly be in his system, Crew had a rough day.  At last count this evening, he had already experienced 5 or 6 episodes of SVT today. After about 6 or 8 attempts to place an IV they were finally successful with a scalp vein.  Poor dude!  They've had to use Adenosine 3 times . . . but each time it only took one dose to convert him.  Hopefully by morning, the Sotalol will be fully in his system and will be assisting the Flecainide in directing his heart electricity down the correct path.  If not, there are still more options to try.  Each time they make a change in medications, we have to wait a couple of days to allow them to absorb into his system before we know if they are working.  This whole process is giving all of us ulcers . . . including the Cardiologist.

On a positive note . . . like I said earlier . . . he is off oxygen! This is a huge step in the right direction.  Hopefully he can keep it up.  He is  still eating very well and gaining weight.  He has the feeding tube in place just for medications.   As of this morning he weighs 6 pounds 4 ounces. His hematocrit levels are up to 28 . . . still low, but better than 25.  His ANC (the fighting army of white blood cells) was in the 1000's this morning . . . which is a really good thing.  And all his other lab work looked great.  Whoops I almost forgot . . . his Thyroid levels were low. The Endocrinologist suggested they start him on Thyroid meds . . . so he'll start those tonight.

The scalp IV looks scary

A binki makes everything better

No tubes. . . for about 30 minutes anyway.

So, the Propanolol should be out of Crew's system by now.  No "SVT's" for about 36 hours . . .  and then he had 2 last night that required some vagal maneuvering.  So, today they increased the "Flecainide" dose a little more.  The doctors decided to remove his feeding tube this morning . . . which is where he's been getting all his meds.  Well, tonight he had to take them by mouth.  They were due after he was already nice and full from breastfeeding.  We practically had to force them down . . . and he prompty threw them up . . . uggghhh.  Now it's a total bummer because he most likely didn't hold any of the meds down.  Right after he puked, he went in to SVT again and this episode lasted about 45 minutes.  By the time all of this was over, he was wiped out . . . poor guy.  Once again, we'll have to wait to see what happens.  They sent a blood sample yesterday to check the actual levels of the Flec in his system, and to make sure they're even therapeutic.  Hopefully this one missed dose doesn't mess things up too much.  Needless to say, they are putting his feeding tube back in for medications . . . until we get the SVT's under control.

So, for whatever reason the doctors are getting  aggressive with our little guy.  They decided to try him off oxygen today too.  When he was awake, he did amazing . . .  Sats in the 90s.  However, when he fell asleep his breathing became periodic(pauses in his breathing pattern) and he started to desaturate and about 30 min later had to get his nasal cannula back.  The doctors also thought it might be best to give him another dose of the Caffeine to try to wipe out the periodic breathing.  So one step forward, and two steps back?

Crew had his eye exam last week and they are not quite mature yet, so he'll get a re-check two weeks after his last check-up.  He should also be getting his MRI this week sometime . . . depending on the SVT situation.  He's gaining weight like crazy and is already 6 pounds 1 ounce.  

Little snuggle bug's getting eyelashes

So fun to see him without tubes . . . even if it only lasted 30 minutes.

We're getting TIRED of the NICU Roller Coaster!

Crew is  47  days old today.  He weighs a whopping 5 pounds 14 ounces today.  He is still eating like a champ . . .  both breast and bottle.  The doctors pulled his NG feeding tube out a few days ago, but they had to put it back in the next evening because he was a tiny bit exhausted.  He's pooping and peeing well too!  He's getting a bit more feisty when he's awake and complains when we're messing with him too much.  And, he still loves a good soak in the tub.

He is now on a 3/4L nasal cannula with FiO2's in the 20% range.  So, he's doing a lot better in the lung department. His hematocrit has come up just a smidge to 27, so he's still on the pale side.  His other lab work looks great.  Knock on wood, no signs of infection and his ANC (fighting army) is holding in the 800 range which is adequate.

Now on to the more stressful stuff!  A Cardiac-electrophysiologist (Dr. Anderson) from Spokane flew in to Boise to consult on Crew's case today.  He is a doctor that specializes in the electrical activities of the heart.  He was full of a lot of information and very positive about Crew's outcome.  None-the-less he said that this was a very difficult case and that Crew's situation is making everyone work very hard.  He wants to try to change his medications again to see if we can get control of the persistent SVT episodes.  Also, the past few days Crew's been having an occasional . . . pause . . . in his heart rate.  Talk about scary!!  These "pauses" are different than a typical premie bradycardic episode.  His heart rate will just out-of-the-blue pause for a second.  So, his ECG tracing will sometimes read "0" or "19" when it should be "120" . . . ugghh!  This is not a good thing, as you can imagine.  So, we are going to discontinue his Propanolol(beta blocker), and at the same time increase his Flecainide dose.  If this doesn't do the trick within a couple of days, they will wean the Flecainide a bit and add the drug Sotalol back in to the picture.  If the Sotalol doesn't work, there are still a couple more medication options to try out, but hopefully we won't have to go there.  Throughout all of this medication "tweaking" we may have to deal with more SVT episodes.  They may even be more prolonged if the medication isn't working.  Or, if the doses get too high we might see his heart rate drop to really low levels.  So, the specialist wants to put an IV hep-lock back in . . . just in case of emergency.  Doesn't this make you feel all warm and fuzzy?  Us too!!!  All of these "unknowns" and "what-if's" and "wait-and-see's" are a tad bit stressful to say the least.  We know that Crew is strong and that he is a fighter, but seriously the poor guy could use a break.  We pray that we will find a medication combination that will get him under control sooner than later . . . for all of our sakes.  

Now, on to the adorable photo updates!!  

Snuggling Mommy

Puckering up for whoever wants a kiss!

Big Yawn!!

Just being Cute!

First time snuggling with Grandpa Schow

Sound asleep after eating

Great Grandma Edith finally got a chance to do some snuggling too

Long and overdue Update!

Whoa!  It's been a day or two or three?  Crew's been "cruising" along the past few days like a typical premie.  Never without some sort of issue or concern, but mostly typical premie stuff.  He graduated to a crib a few days ago, and has been struggling with trying to keep warm.  He has minimal body fat, and  has to burn calories in order to stay warm.  He's dressed, swaddled, wears a hat and has another warm blanket covering him, and still manages to be cold at times.  This is a somewhat normal premie issue.  He has been having "periodic breathing" episodes where he takes long pauses in his breathing pattern and subsequently drops his heart rate and his oxygen saturation and has to be stimulated to return to a regular breathing pattern.  Again, this is an issue that we see with most premies.  A couple things about his episodes make them a bit more scary than the average Joe.  First, he's on the medication Propanolol, that lowers his heart rate.  His resting heart rate has been running around the high 80s to 90s . . . most babies run around 120-140.  So, when he drops his heart rate(brady's) with the periodic breathing, his heart rate drops really low to around 20 or 30.  This is scary to see, but he brings it right back up with stimulation.  The doctors gave him a loading dose of Caffeine (a drug to stimulate regular breathing), to see if this will minimize his "spells".

He's still on his nasal cannula at 1Liter with his FiO2 running around the mid 20's to 30's.  He still tires really easily, but loves to snuggle and be held upright and on his tummy.  He is becoming quite the breast feeder.  He had one feed yesterday that didn't require any supplementing with the feeding tube.  This is a great accomplishment.  Hopefully he will start having more and more good feeds like this so he can get his feeding tube out.  

He is still having a few SVT episodes . . . even with the medication.  The episodes are only lasting anywhere from a few seconds to a few minutes.  He either pulls himself out, or we help him to "vagal" out of it.  The Cardiologist said this might be his "norm" for a while.  We hope that as he grows and get's stronger, his heart will decide to choose the regular path with each beat, and not that darn accessory pathway.

His ANC (absolute Neutrophil count) has been trending on the low side since birth.  This basically means that the number of overall white blood cells are low . . .  or his fighting army isn't sufficient.  This compromises his immune system making him more susceptible to infection.   The doctors ordered a consult with the Hematologist.  He said that for now, they aren't too concerned.  If the low numbers persist, they might want to run more tests.  His hematocrit (number of red blood cells) is also low at 25.  He may need to have another blood transfusion.  This is somewhat normal for premies to have low red cells because of all the blood that is taken for testing.  The doctors want to give him the opportunity to make his own new red blood cells, which he is doing, but if he can't keep up, a transfusion will be needed.  Again, this low HCT affects his stamina . . . making all activities a little bit harder.  They tested his Thyroid . . . which is a tiny bit low too.   Again, because he was so sick in his first few weeks of life,  we're hoping this resolves itself.  

Crew will be getting an eye exam this week to check for "bleeding".  Premies are at risk because of their weak vessels for bleeding and scarring.  The Eye doctors watch this closely, and if they see any bleeding, can surgically laser the area of concern to stop the bleeding, and prevent too much eye damage.  Hopefully this won't be an issue with him because he was over 28 weeks at birth.  But, because he was so sick . . . who knows what is to be expected. 

He will also be getting an MRI soon to look closely at his brain for any potential damage from his illness.  It seems like there is always something to be concerned or worry about.  We all know that worry doesn't help, but prayers do!  So, we keep praying for continued healing and progress.

Crew had a lot of "firsts" this past week.  His first real breast feed, he moved to a crib, had his first tub bath, and his first 4th of July.  Grandma held him for the first time, and so did auntie Dalynn.  Lot's of photos to follow.

Holding hands during cares

Grandma holding Crew for the first time

Swaddled in warm blankets after his bath

He's all puckered and ready for kisses

Crew loves his binki and his binki buddy

Daddy is tired after a long day of work

Talk to the hand

"Auntie Dalynn" holding for the first time

Dad and mom giving Crew his first tub bath.  The nurses put towels in tub for padding, and wrap him up to make him feel secure and keep him warm.  There is also a heat lamp overhead to add some extra warmth.

He was so relaxed in the tub and didn't even cry.  He kept his eyes closed until we shut off the heat lamp.  You can see how well his little abdominal scar healed, but his cord still hasn't fallen off.

Crew's first 4th of July.  Look at the cute little star on his bum.

He was starving when I took these photos, so we had to be quick.  He's rooting around looking for  his food.

Photo op with Aunt NeeNee