November 7. 2016
I waited and waited to write any sort of update once we were home because I wanted to be sure things were really looking up. And I was starting to believe they were.
Today started out as a normal day, except Louis had a little vomiting after eating around 11am, so Dan and I bathed him and changed his clothes and then he started to dry heave a bit. Sometimes these things happen with no explanation but our baby had major heart surgery so we wanted to be sure we were paying close attention. We were thumbing through paperwork to find the right doctors office to contact and as I was holding Louis all the color rushed out of him and his breathing became very shallow.
We called 911 instead and a firetruck and ambulance came to take us to the ER at HDV Children's.
Louis' heart rate is normal but his heart rhythm is too fast. He has developed an arrhythmia called Supraventricular Tachycardia (SVT) which is an abnormally fast heart rhythm arising from improper electrical activity, atrial fibrillation, in the upper part of the heart. So basically, the upper part of the heart is contracting so quickly that he's not filling his ventricles properly. This is why he became very pale. (Note: heart rate is the number of times the heart beats in a minute. The heart rhythm is the pattern of the heart beat. Normal rhythm is called sinus rhythm.) Louis is back in the PICU of Helen DeVos Children's Hospital. He is sedated and they are working on adjusting blood pressure medications to improve his heart function and rhythm. We hope to have more information tomorrow on next steps for Louis to recover.
I don't have any words to describe this day. I don't have any words to describe what it's like to call an ambulance for your baby while you watch your baby turn gray. I've never felt so helpless. Louis still needs your love and prayers.
Comments (9)
Prayers are still going up for him and you. Also sending hufs and love
Sending love, hugs and a giant wave of healing prayer. I think about you folks and little Louis every day. You're all so strong and brave. If this had to happen, I'm grateful it happened when you were present and aware, and help came quickly. I'm sorry you have to weather another storm. Thanks for the update. <3 Lots of Louis Love <3
Prayers will continue for Louis, Dan and you. This is an insane roller coaster you are on. Hold on tight to your family, friends, and faith. I hope the days ahead for this special child of God will have a level of peace and calm with very few crisis like this one.
Sending hugs and kisses, keeping you all in my prayers. God please watch over Louis and his parents.
I am praying for the three of you. Your writing is beautiful! Struck by your last post - especially this sentence: "I feel like every experience I have ever had, good or bad, happy or sad, has shaped me to be his mother." I also believe this is true! Glad you have not lost your faith throughout this experience. Hold on to that thought today while you are with him! Hugs to you and Dan!
Please know this You are an epitome of love, sacrifice, strength and dedication. The true definition of being a "Mother" You have been discovering physical and emotional strength you never knew you had. There is this web of crazy emotions ... Sympathy, Hope, Sadness, Exhaustion .., and "LOVE" I think that is probably the word you are looking for to describe all of this. This is likely the biggest stress that you will ever encounter in your lifetime. Know that you have a huge support group in the people that "LOVE" you. Remember that as you are a mom to Louis, Jodi is a mom to you. She gets it...she "LOVES" you just like you "LOVE" Louis ... unconditionally. She has similar feelings for your situation as you do for Louis'. Hug her. Embrace her. Draw strength and feel the security in her arms. Scott and I are praying for all of you. We pray for the nurses and doctors who are caring for Louis. Nicol, we love you.
Continued prayers for Louis, you and Dan and those who care for Louis. Know that you are being lifted in prayer by many people, even those who do not know you personally. We are sending you much love and hugs.
Sending prayers to your little strong man
Oh no! I logged on expecting more happy pictures! Thank you for giving us an update so we can pray specifically for his heart rhythm to stabilize. The rollercoaster continues, but we are with you on this. Hugs to you all.