Intensive Care

Mattie is 974 days old!


And looking awesome I might add! Miracle!

We have spent 407 of those days in an intensive care unit.

I’m really happy to say that he has spent 556 of his days in our home, living life with family around him.

Mattie’s intensive care needs have involved ventilators, oxygen, Iv medications, surgeries, and life saving intervention. We’ve tried to make the sterile environment of the hospital reflect life at home. We cart in his clothing, his favorite toys, we hang pictures. We spend countless hours with him, holding him, telling stories, loving on him.

Yesterday I wrote about the balance of caring for our marriage, loving each of our children and giving them our time, even in crisis mode. It is intensive care of a different type.

Care givers need intensive care too.

I need intensive care.

I learned early on the importance oft asking care for me.

If I’m going to be good for anyone, I need to take care of me.

My Intensive Care Rules for Myself are….

1. Don’t forget to breathe.
2. Eat regularly.
3. Drink a lot of water.
4. Step away from the bedside for sunshine, even if it’s only 5-10 minutes.
5. Sleep at home except in crisis.
6. Indulge in pampering whenever possible. (Massage, pedicure, etc)


Getting sunshine with Elia today during our all day visit with Mattie.


Grateful for beautiful, quiet spots like this one at our children’s hospital.


If you’re in the thick of it with a child needing intensive care, I give you permission (no, I implore you) to take care of YOU!


2 thoughts on “Intensive Care

  1. We have adopted three boys. One now age eighteen adopted at age three. Has Asperger, Dyslexia and a meth baby. He is starting his senior year soon and will take his first one week trip from home in a week.

    We have Raymond who was 2.4 pounds and 26 weeks gestation. Other then Asthma perfectly healthy.

    Then Marcus. Whew where to begin. He was born to a drug mama, has a deletion and duplication of chromosomes. He has a cleft, part of his brain is underdeveloped and another not there. He has had so many seizures and hospital stays I lost count. He has recently gone from KC Childrens to ST Louis Childrens and his life has changed dramatically. He has a trach, all new meds for seizures and thriving. We were at KC for over a year and felt that we needed to get some fresh opinions. We feel KC served its purpose but ST Louis is the answer we needed. We feel blessed and happy that Marcus has been seizure free for six weeks. We got out of eight weeks in the hospital three weeks ago. He was in PICU six of those.

    They checked him head to toe and now we have hope. We thank the Lord everyday for our nurses and doctors at both hospitals as we realize Marcus would not be here without them.

    We understand hospital stays and home stays. We feel that we are blessed and look forward to a happy future. And agree time for yourself is important.

    God Bless Kauffmans

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