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!!
by Courtney Kruse | May 10, 2014 | Blog Posts
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.
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 precious to me are your thoughts, O God!
How vast is the sum of them!
18 If I would count them, they are more than the sand.
I awake, and I am still with you.
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.
O Lord, you have searched me and known me!
2 You know when I sit down and when I rise up;
you discern my thoughts from afar.
3 You search out my path and my lying down
and are acquainted with all my ways.
4 Even before a word is on my tongue,
behold, O Lord, you know it altogether.
5 You hem me in, behind and before,
and lay your hand upon me.
6 Such knowledge is too wonderful for me;
it is high; I cannot attain it.
7 Where shall I go from your Spirit?
Or where shall I flee from your presence?
8 If I ascend to heaven, you are there!
If I make my bed in Sheol, you are there!
9 If I take the wings of the morning
and dwell in the uttermost parts of the sea,
10 even there your hand shall lead me,
and your right hand shall hold me.
Psalm 139:1-10
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