Our Warrior's Battle Against CHD

Our Warrior's Battle Against CHD

Thursday, December 13, 2012


Lincoln's INR level is back up to 4.0, which is within the range, but a bit high. Dr. Malcom, another cardiologist, said that will be very common throughout the next few months. I should not expect a consistent number, but a range of numbers. They are skipping a dose tonight and seeing how his score is in the morning. The good news is that we now know his dosage was too high, but still in a safe range. I am hoping the 1 mg from Wednesday will be good for his levels to fluctuate in a safer range. We will see tomorrow.

Lincoln did not gain any weight, but lost a few ounces. They took him off his LASIK to hopefully see a change in his weight. I am so disappointed because he had nine feedings yesterday and ate really well. So we'll see how the numbers look tomorrow.

Things are looking more hopeful for discharge. They keep talking about Saturday as a possibility, but I am trying to not get my hopes up and be disappointed. We are all missing each other so much. I can tell this has been hard on each one of us. We are more than ready to be reunited and start our new life as a family of five. Lincoln looks so much better already - he will really be a happy boy when we bring him home.

The staff asked me if I would be a parent future families can contact. I am so honored and would love to answer their questions from a mom perspective. I went to some of our friends and family for advice who unfortunately have undergone surgical experiences with their little ones. They were a comfort to me and gave me great advice. We are also going to join a new online support group starting in Grand Rapids. Hopefully we can learn from others and share our experiences as well.

This song has been an inspiration to me. It has resonated with our situation and how I have had to trust in God and the medical team to care for my baby boy. We may not always be comfortable with change, but there is peace in letting go of our fears. I will be working on that one for awhile :)

Phillip Phillips "Home"

"Hold on, to me as we go
As we roll down this unfamiliar road
And although this wave is stringing us along
Just know you’re not alone
Cause I’m gonna make this place your home

Settle down, it'll all be clear
Don't pay no mind to the demons
They fill you with fear
The trouble it might drag you down
If you get lost, you can always be found

Just know you’re not alone
Cause I’m going to make this place your home. "