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.
by Courtney Kruse | May 12, 2014 | Blog Posts
We arrived a few hours after Noah flew in. He was sleeping, oblivious to what a big deal this was. It was late by then and they had a room for us right next door. The next morning the doctors came by, assessed him, and the next day we had a diagnosis. Here is an update I sent to a few family and friends from these days.
We have a diagnosis surrounding all his weird blood abnormalities! It’s called Transient Myeloproliferative Disorder (TMD). something like 10% of babies with Down Syndrome are born with it. It is just like Leukemia, except about 80% of babies with DS who have it naturally overcome it without any treatment. 20% will develop the real thing. Based on his numbers the hematologist said he likely will overcome, but they will be testing his blood counts on a daily basis. when his platelet counts get too low they will have to transfuse again and again. We feel comforted in knowing what lies ahead and that whatever happens the doctors here know what to do with him. Noah has had a few good nursing sessions now!!! We are still waiting for him to poop. there is no physical reason that anyone can see that is preventing his tummy from working. He is just slow. pray for poop! We are staying in the room next door which is so, so helpful! there are only two rooms here though, so if a baby with more serious problems comes in, we might get kicked out. Pray that doesn’t happen! I don’t want to see him have to bottle feed at night while I am somewhere else!!
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