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...

  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...

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...

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,...

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...

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...

For you formed my inward parts;     you knitted me together in my mother's womb. 14 I praise you, for I am fearfully and wonderfully made.[a] Wonderful are your works;     my soul knows it very well. 15 My frame was not hidden from you, when I was being made in secret,     intricately woven in the depths of the earth. 16 Your eyes saw my unformed substance; in your book were written, every one of them,     the days that were formed for me,     when as yet there was none of them. 17 How...

Because our yet unnamed baby is having trouble getting oxygen, he has to stay in the nursery. And because of my C-Section I had to stay in my room that first night, but I did manage to stand long enough to have them wheel me to the nursery to hold baby for about half hour. A couple of things raise concern that first night. Baby has a heart murmur (Down Syndrome babies often have heart issues) They also often have bowel issues. That night, the stabbing and poking my perfect little baby...

The days before Noah was born, I was feeling less movement, but brushed aside my worries, and thought it was just because he was getting bigger, and had less space to wiggle around. Kick count still measured in the "don't worry range." By Tuesday (May 6th) I had felt him just a few times that morning, but was busy with my kids, I thought maybe I'd missed any punches and kicks. I had a funny conversation with the boys that morning defining "later." Later we will have lunch, AND later we will...