by Courtney Kruse | May 28, 2014 | Blog Posts
It hurt my heart this morning when during rounds, the nurse said he was 21 days old. Another “normal” thing I always took for granted with my other babies was snuggling our 3 week old baby on the couch at home. I can’t wait to introduce Noah to life outside the hospital where where his brothers will poke him instead of needles, the too bright sun shine in his eyes instead of florescent lights, and the people around him love him instead of those who chart about him.
The angel of the Lord encamps
around those who fear him, and delivers them. Psalm 34:7
There is a silver lining to being here in the NICU these last weeks. It’s been good that I am away from my boys to process the loss of the baby we thought we had, and am learning to be thankful for the gift of Noah. Dave went home a few days ago to bring some normalcy to the boys, and do some work. Otherwise, Dave and I have been together here, and have had so much more time to process than if we brought Noah home 2 weeks ago. I am thankful for the time I’ve had getting to know Noah, and giving him that extra snuggle time. It’s been good for both of us. How many moms get to know their 4th child *uninterrupted?!*
When I thought, “My foot slips,”
your steadfast love, O Lord, held me up.
When the cares of my heart are many,
your consolations cheer my soul.
Psalm 94: 18-19
Noah has had good progress!
He has been nursing exclusively for the last several days (3 or 4– I lost count). Feeding Noah is very time and energy intensive. I’ll spare you the details, but it feels a bit like performing a circus act and being trapped in an elevator at the same time. (I am not sure how we’ll do this at home with my other boys needing me too) Yesterday he was up 50g, and today he was up 15g. That’s 2 oz in 2 days!! He’s weighing in at 6lbs 4oz. When he lost weight for a while, they were talking about fortifying, and bottle feeding. Noah has shown himself to be a terrible bottle feeder, so gaining while nursing is a big deal!
His platelets have remained stable at around 20,ooo for at least 10 days! This means he will only have to be tested once every 2 weeks once we get home instead of the twice per week they had first suggested! He is still a long way from being in the normal range (150,000-200,000), but not dropping any lower means his body is producing some on it’s own!
He is breathing room air almost exclusively, and after failing his carseat tolerance trial after just 20 minutes a few days ago, he passed today with no desaturations!! (I wonder if they will send us home with oxygen after all?)
Tonight is the sleep study we waited all weekend for. Depending on what the findings are, the earliest we may be able to go home is Thursday. Pray for Noah to be delivered home timely and safely.
It has been amazing to see this little boy who was so sick upon his arrival 3 weeks ago change to being robust, awake, and behaving as a newborn should!
I will bless the Lord at all times;
his praise shall continually be in my mouth.
2 My soul makes its boast in the Lord;
let the humble hear and be glad.
3 Oh, magnify the Lord with me,
and let us exalt his name together!
15 The eyes of the Lord are toward the righteous
and his ears toward their cry.
17 When the righteous cry for help, the Lord hears
and delivers them out of all their troubles.
18 The Lord is near to the brokenhearted
and saves the crushed in spirit.
19 Many are the afflictions of the righteous,
but the Lord delivers him out of them all.
20 He keeps all his bones;
not one of them is broken.
Excerpts from Psalm 34:15-20
by Courtney Kruse | May 25, 2014 | Blog Posts
We are not home yet. I’ve been thinking about God’s faithfulness through (what feels like) wilderness today. How impatient I am! How patient He is!
First some good news:
Noah has been off oxygen much of the day!
He has been waking up to nurse, and has exclusively done so for the last 2 days. He’s weighing in at 6lbs 1oz.
His platelets have been hovering around 20,000, and have not dropped drastically for about a week.
I just have to laugh about Noah’s fickle heart! Cardiology now doesn’t think his heart is the cause of his (now occasional) need for oxygen. After 4 echos, I am seriously going to laugh out loud if they think his heart is causing problems again.
There are a couple new theories on what is causing him to desaturate and need oxygen.
1. For whatever reason his lungs are just a little less mature than your typical baby born at 35 weeks. The plan is that he would grow out of it:)
2. Sleep apnea (which apparently still happens while he’s awake?). They did a little 6 hour sleep study where they looked just at his oxygen saturation. It recorded 306 dips. Theory is that his airways have low muscle tone, and are not staying open the way they should (waking or sleeping). This could account for some of his need for oxygen. This particular sleep study requires a machine that just broke, and they are waiting on a part to be delivered. Tuesday is the plan for the big sleep study if UPS comes through. They aren’t comfortable sending him home if he’s desaturating so frequently. So here Noah and I sit, waiting.
I found a beautiful place to soak up the sun amidst some sweet smelling crabapple trees, a big water fountain and some tulips. 2 weeks ago when we arrived there was nothing on the trees, now everything is bursting with life (including my sweet snuggly baby!).
by Courtney Kruse | May 21, 2014 | Blog Posts
Noah was so awake yesterday and nursed successfully 7 times!! This is a huge improvement!! Because he’s doing so well, I got to move back in the room next door to the NICU, and I could nurse him overnight:)
His platelets were down again, but because they have shown they can go up, we are waiting until tomorrow to see if he will need another transfusion.
They did a chest x-ray and echocardiogram yesterday and discovered his heart murmur is causing his lungs to have extra fluid, which could be a cause for his need for oxygen. They are giving him diuretics to see if it encourages the fluid to come off the lungs. We will be talking with cardiology today. It has been a rollercoaster with his heart all along. One day everything looks great, and there is no concern, and a few days later, there is concern (apparently this is typical).
They said he will likely go home on oxygen and will need it for a few months. Sigh, I just need to stop dreaming of normalcy.
They are talking about discharge possibly as early as this weekend if every little thing goes well!
Meanwhile back at the ranch… Last night David Kruse, 35, was unanimously endorsed by a vote of Republican delegates from MN House of Representatives District 19B.
http://us5.campaign-archive1.com/?u=035f159c0a99483819427d9ea&id=d384b394b5
Sections of Psalm 16
Preserve me, O God, for in you I take refuge.
2 I say to the Lord, “You are my Lord;
I have no good apart from you.”
5 The Lord is my chosen portion and my cup;
You hold my lot.
6 The lines have fallen for me in pleasant places;
indeed, I have a beautiful inheritance.
7 I bless the Lord who gives me counsel;
in the night also my heart instructs me.
8 I have set the Lord always before me;
because he is at my right hand, I shall not be shaken.
9 Therefore my heart is glad, and my whole being rejoices;
my flesh also dwells secure.
10 For you will not abandon my soul to Sheol,
or let your holy one see corruption.
11 You make known to me the path of life;
in your presence there is fullness of joy;
at your right hand are pleasures forevermore.
by Courtney Kruse | May 20, 2014 | Blog Posts
Noah can hear! After failing twice, he passed the third newborn hearing test!
His white blood count has dropped into the normal range, AND his platelet count went up all on it’s own for the first time ever!
He was off oxygen for about an hour this morning!
He nursed 3 times in a row without needing a tube feeding, and was awake for longer periods!
Happy, relieved tears shed!
As I was walking into the hospital this morning, feeling unsure, I saw a flowery picture on the wall with the verse “this is the day The Lord has made, let us rejoice and be glad in it.” I decided I would rejoice whatever the test results. Fortunately, it wasn’t too hard!
Grandpa Fisher visited today:)
by Courtney Kruse | May 19, 2014 | Blog Posts
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 our family!
On Mother’s Day last week the Kruses from the North came to Grandma’s, took everyone for a long hike, our nephew mowed the lawn, and they had a birthday party for another nephew. It was very fun and a great distraction! Last wednesday Dave’s sister Melissa and some of her kids came to help Grandma with the boys. We are so blessed to have such wonderful family!
Noah
Today they are trying a diuretic to try and rid Noah’s body of any extra fluid that may be around his lungs and heart which could be causing him to require oxygen. He gets another dose tonight, so praying it helps!
Platelets were down again. They are testing him again tonight.
He nursed well about 3 times today! This is a huge improvement!!
I feel like we made a little progress!!
I feel like we made a little progress!!
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