Four hours of awesomeness

After a good solid 4 hours of sleep last night, I am in much better spirits.

Also, I’ve been given lots of encouraging advice from my fellow Heart Mamas to really enjoy Evan now.

The worries and the fear of what’s to come is always looming above our heads, but the time that our heart warriors are here with us now is much more important than the gloom and doom that many of us – all too often – focus on.

And, you know what, reading the past few posts, it makes it seem like Evan isn’t doing well – when really – he is doing SO well!

He’s exceeded my every expectation for him.  He is such a good baby.  At 10 days old, he is doing exactly what he needs to be doing – gaining weight, pooping, peeing, crying, and staying pink 🙂


He is doing well with bottle feeds.  When heart babies first come into the world, it’s not unusual for the ICU to hold feeds for them and only allow IV fluids for the first days of life.

One thing I took for granted was that sucking and swallowing was just kind of a given for Iz.  But, if babies don’t develop and work on the suck and swallow skill – they lose it.

One of the criteria for Evan to move to the regular pediatric floor was he had to tolerate feeds.  For him, and many heart babies, the main source of feeds is taken through a tube of some sort.  For Evan, it’s an OG tube – oral gastric tube – that goes from his mouth straight into his stomach. This allows us to feed him directly without making him “work” for milk which could stress out his heart…which we don’t want to do.  This also allows us to make sure he is getting adequate nutrition to make sure he gains weight.

Evan has been tolerating his feeds via his tube great!  With his cleft lip and palate, we weren’t sure if he’d be able to take a bottle.  But, yet again, my Warrior has surprised us.  He is taking the bottle like a rock star.  We work with Speech Therapy to make sure he doesn’t aspirate during feeds or over exerting himself.  Our cardiologist hopes to have us exclusively bottle feed in the following weeks.

I wanted to not to love him this much.  Isn’t that awful.  I was hoping not to love him this deeply worried I may lose him.  But as the days pass and we get to know him more and more – we fall deeper in love with our little man.  I’ve decided – as much as humanly and motherly possible – to enjoy every second with him and relish in the joy he brings us now.

Really – I can’t ask for more from him.  He is becoming more alert as the days pass.  He has Isabelle’s eyes.  He loves to be rocked to sleep.  He gets really angry really fast but can be soothed fairly quickly.  Even with his cleft lip – he has the cutest little smile that lights up his whole face. He hates getting his diaper changed.  He squeaks like a chipmunk when he’s awake.  He loves to be swaddled.  He loves his pacifier.  He gets hiccups at least twice a day.

He’s my hero.

If you’re praying for us…please keep the following in mind for Evan and us:

  • Evan grows and gains weight.  Weight gain is critical for surgeries.  Pray that he grows well and steady.
  • His heart stays balanced in regards to oxygenating his blood.  Pray that the valve that supplies oxygen to his lung stays open adequately enough so that we can avoid a surgery in the next few months.
  • His heart grows “balanced.”  Without getting into technical terms, pray that his heart – all the pieces – left side, right side, valves, arteries, veins, etc grow and that it’s balanced.  If it stays balanced like it is now, there is a good chance Evan will only need one “big” surgery verses multiple heart surgeries.
  • Pray that he stays healthy.
  • Pray our adjustment as a family of 4 as much of our time will be giving care to Evan and Iz won’t get as much attention as she is used to.
  • Pray for follow up appointments to cardiologist, plastic/craniofacial team for cleft lip and palate repair and other doctors who are following him go well and smoothly.
  • Strength for Craig.
  • Strength for me.
  • Guidance and knowledge for his doctors, nurses and surgeons.
  • For healing.
  • For peace.