Days 1-4

by Courtney Kruse | May 10, 2014 | Blog Posts

Psalm 139:13-18

Early the next morning, the pediatrician comes to my room, and tells us what we already knew – he likely had Down Syndrome, but they would do some genetic tests to determine for sure (we still haven’t received the results of that test nearly a week later, but a clinical diagnosis is made).  The echocardiogram shows that baby’s heart is ok!  AND he passes meconium stool, so bowel obstruction doesn’t seem to be a problem! 

These days we discover several things.

• C-Sections hurt.
• His blood sugars are super low, so they put in an IV with some sugar.
• His platelet count was super low.
• His white blood count was very high which is an indicator for infection, so they put him on 2 kinds of aggressive antibiotics through the IV.
• He was Jaundice, and needed Bili-lights
• There are lots of other possible health related issues that occur with babies who have Down Syndrome

But considering that he is a month premature, he is strong and does what babies should do.  He just needs a little extra time to catch up to where he would be at his due date.

He spent days under the bili-lights and I spent days going back and forth to the nursery.  Platelet counts continued to drop, and they transfused him, only to discover 12 hours later they were almost as low as where he started.  Because of this they wanted him handled as little as possible to prevent bruising, which was so hard for me not to hold him!!  His blood sugars kept lowering, requiring more sugar, then sodium, and on day 2 he tried nursing.  They started doing tube feeding, and his stomach was not emptying into his intestines.

All along the pediatricians at the hospital were on the phone multiple times per day with the specialists at St. Mary’s in Rochester.

Friday morning my milk came in, and I couldn’t feed my baby.  I was being discharged, and Noah had to stay.  It was a hard morning.

If I say, “Surely the darkness shall cover me,
    and the light about me be night,”
12 even the darkness is not dark to you;
    the night is bright as the day,
    for darkness is as light with you. -Psalm 139:11-12

Friday he broke out into a full body rash and his bottom had some
intestines sticking out a bit, along with his wacky blood numbers and
not digesting, or pooping for a couple days the doctors in Mankato
decided Noah needed more specialized care than what they could do for
him.

After I was discharged, Dave and I went home for a few hours, and hung
out with the boys.  Calvin called for grandma instead of me, and
Josiah had no less than 3 tantrums in that time.  It was hard on them
to have mom gone.  We got a call from the pediatrician
while we were home, with lab results that were not
good.  We agreed he should be transferred to Rochester.

So at 4 days old, he was airlifted to St. Mary’s Hospital in
Rochester.  As the team arrived at the hospital to take him we felt
such peace about it. 

Birthday Evening

by dave | May 6, 2014 | Blog Posts

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 all starts, and the testing begins.

Day 0: Birthday

by dave | May 6, 2014 | Blog Posts

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 have a baby, but later for lunch and later for baby are different.”— I was all wrong.

I had my regular OB appointment at 1pm, and left the boys with grandma. Told my Dr. about what I was not feeling, and she sent me to do a non-stress test, “just for assurance.” His heart rate was little slow and moved just once in 20 minutes, so they sent me for an Ultrasound and afterward, Dr. Carlson walked in the door and said “we need to have the baby today.” He had no amniotic fluid, and he got a “0” on the biophysical ultrasound. So thankful for the timing of that
appointment and the thoroughness of my doctor!

I called Dave, and he just happened to be home playing with the boys (in the middle of the afternoon on a Tuesday!!! This rarely happens). Grandma shooed him out the door, while I was being whisked away to the OR- feeling totally normal (I had just been outside with my kids a couple hours ago!). I walked in, and there were a dozen people getting ready for Noah’s arrival. They rushed around asking a hundred questions, and poking me. At one point a nurse said “I don’t know how you managed it, but all the best doctors and nurses are here in this room!” My Dr. allowed them to do a spinal block instead of general anesthesia, and for this I am so so thankful! Dave arrived (possibly after I was already opened up?), and we both cried and talked as Dr. Carlson operated. Just a few minutes later we heard the best, best sound ever.

He cried!!

Dave went over to greet his son, and returned to me with a picture. Then they laid him on my chest for a minute. He was so tiny and so beautiful, but I knew he had Downs Syndrome. My heart was exploding with thanksgiving and relief, and exploding with grief all at once. I cried. (and pretty much didn’t stop for days) The doctor finished up with me as baby was taken with daddy to the nursery. After an hour in the recovery room, they wheeled my bed into the nursery for an hour and a half, and I got to snuggle my tiny, sweet little boy.

I found out later he weighed 5lbs 9oz, and still have no idea how tall he is.

Through all of this, we see God’s timing was perfect.  That day, the verse I read that morning was

Rev. 1:8-  “I am the Alpha and the Omega,” says the Lord God, “who is and who was and who is to come, the Almighty.”

and

Rom 8:28– And we know that for those who love God all things work together for good, for those who are called according to his purpose.

Almighty God is sovereign over all things, and this is good

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