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!!
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
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.
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