Another cute video

So, the SVT episodes are becoming a lot less severe.  Yesterday he only had 2 in a 24 hour period and each one only lasted around a minute.  He also self converted with both episodes.  He is on an increasing dose of Propanolol and Flecainide orally, and his Esmolol drip has been weaned to around 350 mcg/kg/min.  We're crossing our fingers that the oral medication dosages are finally therapeutic.

If it's not one thing it's another in the life of a premie.  Now the poor little guy in anemic.  His hematocrit is around 25, which is low and makes him have even less stamina.  His lab work has also been a little suspicious.  In a nut shell, his WBC count is very low. The doctors have run more tests for infection and other things.  Basically his immune system is very shut down right now, and he's susceptible to infection.  He was started on antibiotics yesterday.

His lungs are wet again.  Because of all the medications he's been getting through his PICC line, he's a bit fluid overloaded.  In premies, the extra fluid they receive has a tendency to go straight to their lungs.  So, he's on the RAM (c-pap) cannula with a peep of 6 and around 30% oxygen.  He received a half of a dose of diuretics yesterday to help pull some of the fluid off his lungs. He tires easily, but otherwise acts appropriately. No breastfeeding while he's on the RAM . . . bummer for him.

On a positive note, he's still tolerating his breast milk feeds.  A couple of days ago, they started adding even more calories to his milk.  They add a fortified powder to each ounce of breast milk, bringing the caloric content up to 24calories/ounce.  He's having the nice seedy breast milk poops and peeing well. His abdomen in nice and soft and he loves his pacifier.

I will most likely only be updating the blog every couple of days until I can get Gretchen transitioned to the job.  She spends around 15 to 16 hours in the NICU every day, so hopefully she can start journaling her experience right here.

A super cute video today

This is an adorable video to tide you over until I can post an update.  I will do my best to post an update tomorrow.  I'm hoping to get Gretchen trained as soon as possible to take over posting.

Update

Once again . . . sorry for the delay updating.  Things have been a bit hectic around here.  Poor little Crew baby has really been struggling with more and more prolonged SVT episodes.   He even has the Cardiologist frustrated and on the phone consulting with other hospitals.  The doctors have been adding and removing medications and turning drips up and then back down again.  As of tonight, his Esmolol drip is running at 600 mcg/kg/min, which is an extremely high dose.  They've also started the oral medications,  Flecainide and Propanolol.  The poor kid is medicated to the maximum.  His oxygen saturations and respiratory effort have been stable with all of the episodes so far which is a huge relief.  But, with each prolonged episode, his parents become more and more stressed. The longer his heart rate remains in SVT, the more damage it might cause and the more life threatening it becomes.  He'll get another EKG and an echocardiogram tomorrow to check on his heart function. Prayers are needed once again to help find a treatment for this little man.  We need to find the medications that will stop the SVT, so that he can grow and get stronger before an ablation is necessary.

Crew is 5 pounds today.  He is digesting his breast milk in spite of all the issues with his heart . . .  Thank goodness!  He went to the breast again on Sunday, and this time he latched on and sucked for about 5 minutes.  He hasn't had the opportunity to nurse again since Sunday, because of all the SVT episodes.  He's pooping and peeing like a champ.  He is still on a nasal cannula at 2L, and his oxygen requirements are up just a bit to around the mid 30s.  He's alert and awake more and more and as cute as a button.

Getting Stronger

The medications seem to be kicking in today a little better.  Crew has had 3 very short episodes of SVT that converted themselves . . . each one lasting about 5 to 10 seconds.  He's been on the nasal cannula and doing well today.  He got to try to "recreational" breast feed.  This is when mom pumps first and then the baby gets to learn and get comfortable with the activity.  He did very well and was super smiley throughout the feed.  He didn't latch, but he enjoyed just hanging out with mom.

Our little Smiley boy

Momma snuggles

cute little piggies

Sweet little hand

Nickole was his RT today and gets the credit
for weaning him to the nasal cannula

A Frustrating Day!

Yesterday was a bit frustrating!  Crew had another episode of SVT  that lasted about 40 to 50 minutes.  Throughout the process of conversion, they first try the non-medicine route.  This can be very stressful for the parents to watch.  They will deep suction trying to elicit a cough, they also try to gag either using a suction catheter or finger, and last they will try to get him to "bear down" to push while pooping with an enema.  When none of these options work, then they bust out the Adenosine. Well, it took 4 attempts with increased doses to finally convert him.   Then 2 hours later, he did it again.  This time one dose did the trick.  He went the entire night without an episode.  This morning he had a small little episode that converted with the enema trick.  The Cardiologist is supposed to be coming in to meet with us this morning to discuss all of the above.

Crew weighs 4 pounds 13 ounces today.  Nickole his RT (first time she's had him) came in and switched him from the RAM to a hi-flow nasal cannula.  Hopefully he will have the stamina to tolerate this.  This cannula is smaller and softer and easier to manage.  He's now having yellow seedy stools . . . hurray!!  Should I post a photo??  He's still a little slow to digest his food.  He's now getting 13mls every three hours and moving about half of that through.  

I'll report more later . . . with photos.

More SVT

Crew had another episode of SVT at 3 a.m. this morning.  The nurse was able to do some deep suctioning, causing a vagal response (drop in heart rate), which converted him into a normal rhythm.  Then somewhere around 9:30 a.m. he did it again.  This time the suctioning didn't work, neither did the ice-to-the-face trick, so they had to use Adenosine again . . . which worked well.  So, the cardiologist was called again and the decision was made to add the drug Digoxin to his medication regime.  As of 9:30 p.m. he hasn't had any more episodes . . . did I say that out loud?

He is still having some issues digesting, or at least emptying his stomach.  He's being fed about 10cc's of breast milk every 3 hours and only digesting about half of that.  He started to have some transitional stools today . . . a sign that at least some of the milk is getting through.  He's also continuing to gain real weight.  His current weight is 4 pounds 12 ounces. 

He is still on the RAM cannula with his FiO2 requirements around 21 to 25%.  His work of breathing has improved and he seems to be comfortable.  The poor guy doesn't have much stamina.  He is awake for his cares (diaper change and vitals) and then he's out again.  He got another bath today, and was completely exhausted afterward.  He is still as "smiley" as ever.  He is especially happy when his mommy and daddy hold him.

Crew loves his binki's.  He just can't quite
 hold them in by himself yet.

Snuggle time with Aunt NeeNee

Snuggling with Mommy after his bath

A good day . . . A not so good day

Finally!  Crew has been pooping all night.  He's having large meconium filled diapers and keeps going and going.  Whew!!  I think we're finally on our way.  The breast milk should be able to move through now, and we should start seeing transitional stools and then on to the healthy yellow poo.  Hurray!!  Enough with the poop talk!!  If you can't tell, I'm a little excited about this breakthrough.

On to the bad . . . poor guy had a couple SVT runs last night, and one today.  He hasn't had that issue in over a week . . . maybe even two weeks.  They had to give him Adenosine each time to convert him to a normal sinus rhythm. He tolerated the episodes well, and converted easily and quickly with the medication.  The doctors think that he just outgrew his medication dose, so they increased his Esmolol drip for now.  The cardiologist doesn't seem too concerned, so we won't be either.  Well, we'll try not to be anyway.

A little smile for the day!

Wearing the outfit that Grandma Schow bought him.
 We thought it would be too small, but it fit perfectly.

This is a sign that hangs above Crew's bed

Those of you who are squeamish  . . . look away.
 This is the kind of poop we've been looking for.