A Little Something Extra

Tuesday, May 5, 2009

Happy Heart Day, Micah

A year ago today, Micah's heart was fixed by Dr. G. It was a very long day, one that I won't likely forget. Some memories in the forefront of my mind include: Dr. G telling us "don't be surprised if you don't see me until 2 or 3:00 this afternoon" and then not seeing her until 8:30pm; hearing "Micah's lungs are sick" from the nurse who came out all day to update us; praying with a pastor from a church in Wausau who was there with a family whose baby girl was having surgery that day; being the last people in the surgical waiting room at 9:00pm after arriving there around 8:45am; seeing his heart beating through the tape over his open chest; this photo (don't link to it if you have a queasy tummy); and walking into the PICU and seeing a bunch of doctors looking at a ridiculous number of machines trying to figure out how to manage Micah's crazy high heart rate. I didn't realize early in the afternoon how bad things were. Mark's brother knew, though, when he called Mark's mom in the afternoon and she told him that Micah was still in surgery. Andy is an anesthesiologist and works on a lot of heart surgeries. He knew based on the amount of time that Micah was in the OR that they were having a difficult time getting him off bypass.

I'm so glad we don't have to go through that again. I don't know how families go through multiple heart surgeries. Micah's heart appears to be doing well. He saw his cardiologist last week and she heard the same level (mild to moderate) of regurgitation on the left side as she heard six months ago. He'll see her again in six months and she'll do another echo at that time.

Micah is growing very well. He's still being fed primarily through his intestines (the J-tube part of the GJ-tube), but we feed him a few hours a day through his G-tube. If I start feeding him through his G-tube and run it for 2 hours, he gets slightly over 3 ounces of formula. Two hours later, I "vent" his stomach and there's still formula in there so I know not to try more at that point or he'll get puky. That's how slowly his stomach and duodenum process food. For reference, Matthew takes 5 ounces and wants another 5 ounces just three hours later. We lower the rate at which Micah receives food overnight compared to daytime because his system slows down overnight, but without the overnight feeding his system would probably not be able to handle his needed volume. I'm thankful for the pump, though I've often wanted to throw it out the window.

Someone saw Micah last week for the first time and commented on how big he's getting and asked, "So, is he eating like a champ?" I know this guy didn't know what all we've gone through with the feeding stuff so I answered, "No, he still doesn't take anything orally," and went to the other room and cried for five minutes. Would we be dealing with all of this if it weren't for the paralyzed vocal fold he received during heart surgery? Hopefully not to this extreme, but we don't know for certain. I do believe it was the aspiration associated with the challenges of eating with a paralyzed vocal fold that caused his oral aversion in the hospital, resulting in him not taking anything by mouth by the time we came home. I look forward to the day that this child picks up a Cheerio, puts it in his mouth, gums it, and swallows it (and without puking).

Heart and feeding stuff aside, Micah is just a sweetheart who loves to make you smile and laugh. He cries when his stomach hurts and when you speak harshly to him while saying, "No," after he starts pulling off his glasses. But you can't go anywhere with him without getting lots of adoring looks, especially with his glasses on. Seriously, how could you not smile at this face?

And I couldn't pass up the opportunity to add this photo of Melissa and Micah. Melissa started helping me out here at the house over a year ago, before Micah's heart surgery. She's a nursing student at a university close to our house. She has become an honorary member of our family and we love her dearly.


Happy Heart Day, my sweet boy. And thank you, God, for Micah. What a gift!

13 comments:

Ami said...

Happy heart day, Micah! What a sweet, beautiful blessing you are to your family. :)

Jonathan's Mom said...

He is just precious in so many ways!

Rena said...

Happy heart day, Micah. You are an amazing, wonderful boy. I am in awe.

The Boltz Family said...

Jack and I could not let the day pass without wishing Micah a Happy Heart Day!

Sonia said...

Happy Heart Day Micah!

Cathy said...

Happy Heart Day, Micah! Such a beautiful, strong boy you are!!! God's continued blessings to you (and your entire family)!

Kris said...

Happy Heart Day, Micah!!! Wow, look at you, a year later! You are one smiley adorable little boy :). Kris

Mindy said...

What a walk down memory lane. I know Micah is such a gift to your family...praise the Lord!

ATLKrafts said...

Thank you God for getting him through that surgery!

Rachel said...

HAPPY HEART DAY you adorable little guy. What an amazing gift to be able to happily celebrate this day.

TUC said...

What memories... Happy Heart Day, beautiful little one!

Anonymous said...

Awww, how sweet! I love spending time with your adorable boys :) I am so proud of how far Micah has come... he is such a sweet, sweet little boy.
Love, Melissa

My life "A mother" said...

Happy belated Heart day Micah.
He is so absolutely precious Jennie. Please give him a huge big hugs from me,I remember when you got preggo and found out he had DS. He truly has been blessed with such great parents.
Love always,
Nancy