MckMama: please just let my baby get better

Thursday, October 29, 2009

please just let my baby get better

Brief Stellan update, but if you are following me on Twitter, this may be nothing really new. My husband is here and he has been holding lethargic, awful feeling Stellan for a while now.

Early afternoon on his first birthday, Stellan is not eating birthday cake like we had planned, but IV fluids, medication and a possible blood transfusion. He is breathing on his own without the aid of the ventilator, and has blow by oxygen. Stellan is still swollen from excess fluid, he is up about a liter and a half, though his kidneys are working hard to eliminate it and he's being given repeated doses of a diuretic. The results of his latest blood work indicate not worse, not improved.

The constant struggle is to use just enough of exactly the right drugs to control his stubborn heart rhythm problems while avoiding a harmful build up of those same drugs when they are given in high doses, causing harmful side effects like Stellan seems to be experiencing. Dr. B. is working hard to find just the right combination and dosages to control this latest round of SVT. The high dosages of drugs and their side effects, and the hours of very high heart rate, have made Stellan agitated and uncomfortable. His perfusions is pretty poor, but thankfully he is not as manic as yesterday and is resting on and all in our arms all day.

Thank you for praying as you are led to pray for Stellan! Whether you are called to pray for the doctors, nurses and many health care professionals who are providing his care, for his brothers and sister, or for me and Prince Charming, for our stamina and clear headed decision making, or any other specific need that comes to your heart, thank you for simply praying.

My only real request for my my baby to get better. Please, Jesus. Please just let my baby to get better.

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I used to think I was defined by my cloth diapering, babywearing, organic eating, acrylic painting, fast talking, vaccination delaying, color obsessing, Frozen Tundra residing, nose piercing, frequent blogging, homeschooling, amateur gardening, baby food making, photograph taking, faraway traveling, baby making, high school swimming, tattoo designing, medical detail memorizing, non-circumcising, country living, college soccer playing, small government believing, pro-life advocating, television abandoning, extended breastfeeding, German speaking, deep thinking, former art teaching and baby cosleeping ways.

Now, although I may choose to still do those things, I will simply be myself, an imperfect mother, wife to my Prince. I am learning as I go and so thankful for God's forgiveness.

Prince Charming is my manly husband, Daddy to our Many Small Children. We have known each other since infancy and have been married for 6 years.

Our marriage has not been without it's extreme ups and downs. We were about as close to divorcing as you can come during the time we were pregnant with our son Stellan. We nearly let our struggles rip us apart, but with our amazing marriage counselor's help, we clung to God's will for our marriage and are still together.

We have a brand new idea about what marriage is. I am in love with my husband all over again. He is insanely forgiving, patient and long suffering. He strives to know God more and wants to be an awesome example for our children. I love that my husband is real with others about his shortcomings and flaws. He doesn't hide behind a veil pretending he's someone he's not.

And I'm not afraid to toot his horn about how amazing he is, either. He is a wonderful communicator, makes fabulous bacon and is righteously funny. He's a good friend, a passionate husband and a devoted father.

Prince Charming loves to work in the garage with our boys, wants to get back into Karate and is a great Jet Skier. He was a world class runner when he was younger and is a world class man now. He loves meat, music and conservative talk radio. I am committed to him forever and am so glad he doesn't make me put the worms on his fishing hooks!

Big Mac is our firstborn, our multi-faceted son K. At age 5, he handles his role of biggest brother impressively well. Big Mac cares for his siblings intensely, is astonishingly independent and amazes us with his deep thinking.

He is thoughtful, creative, patient, inventive and interested in how mechanical things work. He loves to build and construct and is relatively obsessed with his mother, who is very similar to him in personality. You can often find Big Mac digging in the sandbox, dressed in homemade costumes or eating carrots and hummus.

Small Fry is our spirited little 2 year old daughter M. To our otherwise masculine brood of offspring, she adds a touch of feminine sweetness. Our blue eyed beauty loves to wear her baby dolls in a sling, dotes on her big brothers and plays mommy with her little one.

You can often find her playing with her dollhouse or fishing the Chapstick out of my purse. She puts bows in her hair when she is supposed to be napping. Small Fry is spirited, very talkative and sleeps in a raspberry colored bedroom with her baby doll, Ruby.

MckMuffin is our 1 year old miracle son Stellan. When I was 22 weeks pregnant with him, he was in heart failure. He had SVT, Hydrops fetalis and heart block. At 24 weeks we were told there was no hope for our son, whose heart would not respond to medication. Stellan would be stillborn. We embarked on a journey of faith like nothing we could have ever imagined.

God blew us away with Stellan's miraculous recovery. He was born alive, healthy and with no sign of SVT! His doctors were sure he had outgrown it and we took him home.

When Stellan was 4 months old, he began to suffer from SVT again. Our faith walk deepened as we clung to God. Stellan was hospitalized for 6 weeks and had a risky, unsuccessful ablation performed in Boston. Between then and when he turned one, Stellan had a hospitalization in the ICU every single month.

When Stellan's SVT got so bad that we nearly lost him a few times, once when he coded on the table mere days after he turned 1, he had another emergency ablation. Although the outlook was grim and the hope for complete success was slim, we put our son in God's hands again.

Why God chose to heal our son on earth is something we cannot fathom. But He did. Stellan's second ablation was a rip roaring success and he has been free from SVT since November 9, 2009 with no permanent damage to his heart.

Stellan is the light of our lives. A dimpled darling, he loves to cuddle, giggle and be doted on by his three older siblings. We have vowed to never stop praising God for the miracle that Stellan is.