Prince Lionheart

(This post was writted while Cole was in the hospital a few weeks ago)

When Cole was first born he had a little heart murmur.  Nothing concerning and something actually very common in newborns.  By the time we were going home the pediatrician could no longer hear his murmur, and he was a picture of perfect health.

2 days later he had his first "well baby visit" he weighed in a 9lbs.6oz, and 22 inches long.  The doctor was very impressed with our big healthy baby boy; so we were on our way.

A week later we had our second "well baby visit"

He weighed in at 9lbs 10.8oz.  The doctor did think he would have gained more weight but wasn't overly concerned because he was definitely eating enough for a newborn (2-4oz every 2 1/2-3 hours).  Then I noticed......and watched......and tried to stay calm......and snapped at Kyle for continuously talking because Dr.D was taking a long time listening to his heart.....

The report on Cole that day: "He looks good, no he looks great.  He is eating well and growing.  Have you noticed anything strange with him?  Is he a more fussy baby?  Does he turn purple or blue at times? Does he sweat while he eats?"

My response to all these questions "Ummmm NO he is my easiest and most laid back baby". 

"Well, when I listen to his heart I am hearing some irregular beats and patterns (insert mommy stomach drop here).  He seems to be tachycardic, and then almost skips a beat. (insert mommy fear and nausea here).  I think it would be a good idea for him to see a cardiologist. (insert mommy heartbreak here).

So, the very next day (THANK GOD) we had an appointment with a cardiologist at Children's Hospital.  The #1 ranked Children's hospital in the country, by the way (Go Boston! and Go US for living so close!)

They took our little ones blood pressure and pulse, and listened to his heart beat.  Then came the tough part.  They hooked him up to an EKG machine.  The test itself had no negative effect on him in anyway, but it broke our hearts to see all these wires coming off of him. After waiting what seemed like forever for the cardiologist to come in with her findings she came in and gave us what felt like reassuring news. 

"Yes, Cole has some irregular beats and rhythm patterns but nothing I am overly concerned about.  He is happy, healthy and growing and looks great.  If this were happening 20% of the time a yellow flag would go up to say something is going on here, but he isn't even doing it 20% of the time."

PHEW!!  We were so relieved!  I felt like I could take a deep breath again.  The next step was to go and have an ultrasound on his heart just to verify everything was working properly, and blood flowed well.  The ultrasound went really well.  Cole lied still on the bed, and even fell asleep and the results were fantastic.  He had a healthy, normally functioning, working heart.....THANK YOU JESUS!

After, we got the news about the ultrasound the cardiologist did recommend we have Cole wear a heart monitor at home for 24 hours just as a triple check to get a better reading on what was going on with his heart.  Of course we agreed.

That Friday a woman came out to the house and hooked Cole up.  He totally showed me up by the way.  My normally very cool, calm, collected, easy baby Cole was unusually out of sorts and fussy that day.  I was so worried the monitor reading would be wrong....this isn't how he usually is!  The next day the monitor came off and Monday it went back to the doctor.

Today, Friday August 3,2012...(the anniversary when Jason asked me out for the first time, and the day Cole will turn 4 weeks old) I received a copy of the letter in the mail that went to our pediatrician from the cardiologist that just stated her findings.  Something in me felt uneasy.  I was going to call her to follow up with the monitor results but remembered she said it could take up to 2 weeks for us to hear from her.  So I took a deep breath calmed my mommy nerves and tried to continue with my day. 

Until the phone rang.  The cardiologist had the results from the monitor and had some serious concerns.  Cole has an arrhythmia as well as major tachycardic states where his heart rate increases to 210 beats per minute.  Which can be normal in infants, but this was not normal.  She wanted to start him on medicine right away.  We could choose to do this as an outpatient procedure, or admit Cole to Children's Hospital Boston and do it there. 

She was very comfortable with us doing the medication on an outpatient basis because Cole never did show any signs of having an issue, and a lot of babies with this condition may not eat very well, and I had a champ on my hands! Because he was a bigger baby, healthy and strong she gave us the outpatient option.  I felt confident in myself that I could tend to him and take care of him.  What I didn't like was the thought of waiting for results.  Have him start the medicine, have a monitor sent to the house, send it back and wait for results.  Mommy me wants to know right away if it is working, if dosage needs to be adjusted, if we need to try a new medication; and have someone else beside me watching for all the possible side effects because I would drive myself NUTS!!: is he sleeping more because of the medicine or because he is just going to go 4 hours now through the night?  Is he lethargic because it is hot or is it the medicine?  Is he not eating enough now?  It was a lot to take in.

Of course I asked if him being out of sorts could be why we were seeing these crazy rhythms and she assured me it was more than just that.  I also asked if we could admit him Sunday morning because the 4th we were having a 40th wedding anniversary party for Jay's parents and they even have family coming in from Ireland to celebrate!  She told me this needed to be started TODAY.  Again, we could do it outpatient....but the results and variables were a lot.

So here we are at Children's hospital with our littlest guy.  It breaks my heart to be here and to have him hooked up to a machine.  However, it also puts life into perspective.  Next to us is a baby boy who was literally born with half a heart and the miracle workers here are building him one.  A girl down the hall has been here in this hospital since she was 3 weeks old.  She recently turned 5 and just received her heart transplant.  In a few weeks she will leave here for the first time in her life!

The doctors are so nice, and so kind, and explain everything so well.  The nurses are incredible!  With their little acts of kindness, soft touch, and good hearts.  I want to go back to school and be like them. The other parents feel for us! "You must have been so scared!  I can't imagine!" I am looking at them like we have an irregular beat....your baby has a piece of heart missing, don't feel for us!  There is inspiration and love, and support all around.  The hospital sucks and it is especially hard to see some of the other children here, but it is magical and miraculous at the same time.

As of this moment the best way to explain what is going on with Cole's heart is this: We all have one part of our heart that controls the beat; how much, how hard, how often the heart beats.  Cole has another part of his heart that wants to control the beat as well.  He needs to go on a medicine that will suppress that adrenaline that sends the second signal to the heart to beat.  Though his heart may go days without any tachycardic rhythm, it could go into a tachycardic state and not shut down, which could make him very very sick.

The good news is this medication is usually quite tolerable with infants.  This medication will not stunt his growth or development in any way, shape or form; and 30-50% of infants usually grow out of this condition within 12-18months!

Its killing me to be here with him.  I HATE that we may miss the party...although I have to state when we arrived EVERYONE here knew we had an occasion to get to and assured us that they will try to have us out so we can attend (least of our worries, but how caring of them to even recognize that and try!). However, my mommy heart feels much more at ease with more instant answers, and as hard as it is to see all these little children; its a magical, miraculous place to be.  All I can feel is blessed.

UPDATE: The next day =)

Cole gets to go home today (August 4th) around 5pm because everything is looking OK.  His potassium was high, but it is challenging to get a good blood draw on a newborn, and often times the cappilaries burst giving an inaccurate potassium count. After 3 potassim draws, and 3 sugar tests, and another ECG which was normal the doctors feel confident the medicine he is taking (propanolol) is working well.

He has been diagnosed with ectopic atrial tachycardia.  So its medicine 3 times a day, with follow up appointments with his pediatrician and cardiologist and LOTS of PRAYERS that he will grow out of it.