by Courtney Kruse | May 19, 2014 | Blog Posts
I got to see all my boys, all at once today! It was a teeny tiny glimpse of what it will be like when we come home, and I hope for that!
All these days at home, Grandma has been caring for our boys. Not a small task. We have had friends help her by taking the boys on play dates, have had many meals delivered. As Dave was sick, Donna visited, and Carol stayed with me for a couple days. We have had more offers to help than needs! I am so thankful for the way our friends have been carrying our family!
On Mother’s Day last week the Kruses from the North came to Grandma’s, took everyone for a long hike, our nephew mowed the lawn, and they had a birthday party for another nephew. It was very fun and a great distraction! Last wednesday Dave’s sister Melissa and some of her kids came to help Grandma with the boys. We are so blessed to have such wonderful family!
Noah
Today they are trying a diuretic to try and rid Noah’s body of any extra fluid that may be around his lungs and heart which could be causing him to require oxygen. He gets another dose tonight, so praying it helps!
Platelets were down again. They are testing him again tonight.
He nursed well about 3 times today! This is a huge improvement!!
I feel like we made a little progress!!
I feel like we made a little progress!!
by Courtney Kruse | May 17, 2014 | Blog Posts
Just to clarify, this is all outside of what I can handle. My eyes are red. My heart breaks ten times each day. I am a mess.
But the Almighty God who created all things and controls all things is with me. His words are like food (much better than anything from the cafeteria), and I am so encouraged.
It is not ok that Noah is sick, it is not ok that I haven’t seen my boys in almost 11 days, it is not ok that Noah will have a lifetime of struggles ahead of him. I am ok because the Lord my God with me and for me. Noah is ok because Sovereign Almighty God is with and for Noah.
Yesterday Noah failed another hearing test.
His white blood count had dropped again and the percentage of blasts also dropped (good!), and his platelets had dropped again after the transfusion (bummer). Will test again tomorrow to see when he will need another.
Really exciting news today is that Noah nursed his first full tummy meal! He knows how, but now needs to figure out how to do it 8-10 times per day.
Unfortunately his oxygen requirement has been up and down. The doctors don’t know why. We are just waiting and watching.
He is adorable and snuggly and I love him.
by Courtney Kruse | May 15, 2014 | Blog Posts
Upon my arrival this morning, Noah’s nurse said they did the newborn hearing screening and he failed.
The doctors have said only about 10% of the babies who fail the first test are congenitally deaf and they will test again Monday. With my sister being congenitally Deaf, I wonder if the test is right. I know what to do with deafness and I can figure out Down Syndrome, but both?! My heart aches for his future.
They also did an Echo on his heart. The murmurs had closed up completely, and the enlarged ventricle is now average size!!! His need for oxygen is not heart related!!
Dave is home with the boys for a couple days. Even though I could have used him here today, I am glad he is with them!!!
All day as I have been processing this news, these verses pop into my head.
Fear not for I am with you, be not dismayed, for I am your God. I will strengthen you, I will help you. I will uphold you with my righteous right hand. Isaiah 41:10
And whatever you do, in word or deed, do everything in the name of the Lord Jesus, giving thanks to the Father through Him. Col 3:17
by Courtney Kruse | May 14, 2014 | Blog Posts
Lab results came back today confirming Noah has TMD, and that the only genetic abnormality is Trisomy 21 (Down Syndrome). Also they confirmed the kind of cells floating around in his blood are Myleo cells which is what the doctor suspected. It is comforting to know that there is nothing else going on with his blood and bone marrow. Now we just have to wait out the transient myeloproliferative disorder, and wait for him to get better on his own.
Also, he definitely still needs the oxygen, and so far they don’t know why. They are going to do an Echo on his heart again. Pray that whatever is causing him to have trouble breathing would just go away. I tremble at the thought of them cutting my baby open.
We have been working on breastfeeding, which he has done really well 1 or 2 times per day, but otherwise is just too exhausted. If he gets the hiccups or is bothered, he just wants to cozy in and go to sleep. Tube feedings continue. He is 6 lbs now!!
I heard the comment today “he’s not going anywhere for a while, so…” Silly me, was still thinking it might be just a few more days.
I miss my boys.
Dave is still battling either really really bad allergies or a cold and will be going home for a couple days to be with our boys. I have friends coming to stay with me. There are not too many people who can drop everything and come- I am so thankful for them!
by Courtney Kruse | May 13, 2014 | Blog Posts
He pooped all on his own yesterday just before the Drs were going to start investigating! Such a huge huge relief as they were thinking there may be something wrong with his intestine. Never will I grumble about another poopy diaper! New thing today is his oxygen saturation level keeps dropping inexplicably, so he needs oxygen. More X rays and ultrasounds to come. His platelet count was super low yesterday and he had to have another transfusion. Poor guy gets stabbed 3 times each day, and is bruised all over. Breaks my momma heart. I miss my boys at home terribly. Thanks for praying! It makes a huge difference! Dave caught a cold, so he has been staying out of the nicu. This is hard for me. If he continues to be sick we will need someone to come be with me so he can go home for a bit.
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