by Courtney Kruse | Jun 2, 2014 | Blog Posts
On May 9th Noah came to St. Mary’s hospital, and on May 29th, he was discharged! It was hard to contain my excitement as we left those other mommas and their babies in the NICU.
I am so thankful for the nurses and doctors who took care of Noah. There was one nurse in particular who gushed over Noah and how cute and sweet he is. She made little signs for me in the night using pictures of Noah. She listened and let me cry with her when we thought Noah was deaf. On those days when all I could see was his DS and other problems, she helped me remember his sweet babyness. She doesn’t know how much she helped me!
We almost didn’t get to leave! We were waiting (a bit impatiently) for the doctors to come around and set Noah free. The pulmonologist was insisting we stay another few nights for some more sleep studies, as his oxygen saturations had dropped while on oxygen the night before. The neonatologist looked at the times they were concerned about, and argued that those were the times Noah was eating, and pooping, and having his diaper changed, and was confident he was ok to go home. We came home with oxygen, “just for when he is sleeping or resting” So pretty much all the time. We will have another pulse-ox sleep study in a week AT HOME!
The discharge process was encouraging. We discussed each of Noah’s “problems.” He conquered or is in the process of beating almost all of them!
We return to Mayo every month for the next year to meet with Hematology (more blood draws). The respiratory specialist will follow him as he grows out of this breathing issue. Cardiology, Endocrinology, and a Geneticist will also have appointments with Noah several times in the next year, but not as frequently.
We arrived home with lots of hugs, Noah was sung to by each boy, and I got to sing and pray over each boy at bedtime. Thankful to be home!
The Lord is my strength and my shield; in him my heart trusts, and I am helped; my heart exults, and with my song I give thanks to him. Psalm 28:7
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:)
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