We are getting better at learning the acronyms and lingo of having a NICU baby. Koby had an MRI, which is a big machine that took images of his brain. He then started his twenty four hour EEG (Electroencephalogram). They hook up electrodes to his brain and measure his brain activity.
We will meet with the neurologist tomorrow to discuss what is happening. Koby had a pretty intense seizure this morning. It lasted about 30 seconds. He was crying very intensely and was upset. He then started jerking around and then immediately fell asleep. They opened his eyelids and his eyes were scanning back and forth rapidly. I'm not a doctor but this is obviously not something we want to see happening. He also ripped out his feeding tube several times that goes in his nose because he was agitated.
Tomorrow, we hope, will be a better day for him. We are anxious to hold our little red firecracker. With all of the testing we didn't get to see him today. That was really hard as we are now used to seeing him and holding him each day. But on the bright side Sharalee was able to spend the entire day with our other five children. School was canceled in Tennessee because we got a whopping 1/4" of snow this morning ;) . This is our two year old Krew. He chose his snow outfit which was his Spider-Man coat, exercise pants, gloves, batman socks, and cowboy boots!
Here are some of the wonderful cards Kaylie's friends made for Koby. They mean a lot to us.
6 comments:
I read your blog every night to see how Koby and your family are doing. Hang in there. I know it's so hard to see things not going "normally" and scary to think of the future, but it will all work out. Koby will be, and already is, a blessing to your family. And you are a blessing to him! Heavenly Father sent Koby exactly as he is for a reason. Hugs to you and your family, including sweet Koby.❤️
Ok, I'm obviously not techy because I don't even know how to add my last name here...this is Amy Brooks. You probably don't remember us, we lived in TN for just 1 year while Dan did his pediatric ophthalmology fellowship. Our oldest daughter has a chromosome abnormality. I was super preggers along with Trish while we were out there. Anyway, my husband and I are both praying for your sweet family. Love up little Koby!
Amy I totally remember you :) I was pregnant too and due like within a few days of you I think. Kamden was born April 18, 2011. I so appreciate your comments. It's true he was sent to our family the way he is on purpose and we will all have so much to gain from his special spirit. I hope you and your family are well.
Dear Steven and Sharalee, We also read your blog every day to see how Koby is doing. Please know we are praying for you and your sweet baby. I can tell from your blog that you both are travelling this tough road with a great deal of faith. Many years ago we also spent some time on that road and even today (decades later) I remember the undeniable truth that NICUs are staffed by angels -both seen and unseen. Heavenly Father does have a purpose in this for Koby and your whole family. You are a blessing to Koby and he is a blessing to you. Whatever ups and downs lie ahead, please know we remember you all in our prayers. Sharalee, it occurs to me you don't know us. Bob and I lived in the Corona Ward when Steven was young, and we were friends of Mike and Marianne. Our son, Robert Callahan, and his wife, Lisa, live in TN.
Our love to all. Bob and Sheena Callahan
Thank you Sheena for your comments I totally agree with you. We do know your son Robert and his sweet wife Lisa. She works at our kids pediatric dentist office and noticed our last name and we made the connection. We've even had them over for dinner a while ago and very much enjoyed them.
Sharalee, I do remember now that you were expecting and we had due dates close to each other...Luke's due date was April 16, but they took him early because I had a weird liver thing going on. That's how I remembered about Trish, because she also had the same thing. So, is Koby #6? Did I read that at some point? I wish I was there to help out with your kiddos and family needs. We'll keep praying. I love, love this quote by Pres. Hinckley, especially when things seem to be beyond our own ability to control.
"It isn't as bad as you sometimes think it is. It all works out. Don't worry. I say that to myself every morning. It will all work out. If you do your best, it will all work out. Put your trust in God, and move forward with faith and confidence in the future. The Lord will not forsake us. He will not forsake us...If we put out trust in Him, if we will pray to Him, if we will live worthy of His blessings, He will hear our prayers."
You are doing everything you should, and can. There are lots of prayers being said for Koby and your family. Keep doing what your doing. Things will work out. We love you!❤️
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