by Courtney Kruse | Jul 29, 2015 | Blog Posts
There are questions without answers.
People often describe an experience as being “rollercoaster.” Noah has been nothing but a rollercoaster. Not the smooth kinetic kind that we grin through. He is Space Mountain. Blackness interrupted by strobe lights that leave spots in your eyes, piercing shrieks, shocking twists that pop your neck. As the car rolls into the gate (head spinning, stomach swirling), and we prepare to stumble away and sigh relief. The seat belts stay latched, and we ride again.
It’s not all bad. I wouldn’t want to ride that rollercoaster with anyone else.
Before all this went down 2 weeks ago, Noah revealed a dozen big and little milestones all at once. This is the disney experience I wanted! I jotted them down just so they can smile at me next to my pjs in the closet, and I can smile back with a prayer of thankfulness. It helps maintain perspective of progress, in spite of the wearying work.
The BEST thing he is doing is LOOKING at me. Not just looking, but looking at me and smiling! I had wondered about his eyesight or if he is autistic. Now he delights in being played with, while previously he didn’t seem to care! He seems more like a typical baby now, and we are all enjoying how FUN he is!
This is my happy little illegible list.
I have never had a kid change so much in just a few days!
Regardless of how dark scary his health is, or sunshiny bright Noah’s development is, God’s strength and goodness is my rest and praise.
In the day when I cried out, You answered me, and made me bold with strength in my soul. Psalm 138:3
So I hold tight to my sweet boy, and try to enjoy the ride.
by Courtney Kruse | Jul 28, 2015 | Blog Posts
Testing leads to more testing.
Last week Noah had some disappointing appointments. He failed his first hearing test after surgery, and it seems his tubes are clogged or fallen out. Already. His ENT wants to replace them. His oxygen saturations have been fluctuating between being great, and worse than before surgery. His doctor picked up her phone and scheduled a sleep study for Sunday night.
We survived the sleep study, and the results were good! She said they were so good, we wouldn’t have to use oxygen!!! This is what we were waiting for, right?! Skeptic mom here. A few nights ago, I had to have him on almost a liter to keep his sats up. Noah had a good night in the sleep center. He will have a home study next week, just to rest this momma’s mind.
The study also showed some prolonged “obstructive events” that seem to be affected by the position he was sleeping in. Maybe this explains his bad nights?
The chest x-ray was cloudy.
He had an echocardiogram today to see if his heart is involved. He has an appointment on Thurs with cardiology– a different doctor this time. (Last fall we saw a doctor who was hard of hearing (and maybe in denial). He couldn’t hear my voice, but listened to my baby’s heart tones. He said he didn’t need further testing, because it sounded like the holes had closed. Nice guy, but I want someone who can hear well to listen to my son’s heart.)
Next week Monday he is scheduled for surgery for new tubes, a bronchoscopy (look at his airway), and an overnight ph test to see if there is reflux in his lungs. So we get to do more days at St. Mary’s.
Sleep study = very little sleep for mom.
More on bated thanksgiving later.
by Courtney Kruse | Jun 29, 2015 | Blog Posts
by Courtney Kruse | May 28, 2015 | Blog Posts
The last few weeks have been very busy with appointments and working out solutions in a few different areas. If you care to know the details, I love to chat. There have been questions, praying, solutions, waiting, worrying, rocking, healing, pain, suctioning, sitting, and more waiting.
Noah’s breathing had gotten worse over the last month, and when we saw his ENT doctor, she wanted to do surgery to help his breathing. It was going to be scheduled a month out, but then she called and said she could do it tomorrow. 24 hours later he was being operated on, and 24 hours after that he was breathing so much better!! He has had several free from oxygen nights!
When they sent us home with oxygen a year ago, they made it sound like it wasn’t a big deal. It has been nothing but a big deal.
I will not miss going to “plug in the baby,”
I will not miss untangling tubes and wires.
I will not miss the clink of oxygen tanks when I step on the breaks, or realizing a tank is empty and having to leave wherever we are to get one.
I will not miss those nights I am up wrestling a half sleeping, and desaturating child to keep his cannula in his nose.
I will not miss watching him with one eye as he tosses in his sleep, knowing that the moment I close my eyes is the moment he will pull it out.
I will not miss researching better tape or sleeping solutions.
I will not miss little balls of tape in the laundry.
I will not miss the noise, the noise of the concentrator, or the noise of his squeaky breathing and snoring.
I will not miss well-meaning strangers pitying looks, comments or questions about my son’s medical history.
I will not miss watching my baby sleep worrying he is getting oxygen.
I will not miss bolting out of bed from sleep when the alarms are screaming, as I race dying brain cells to fix the problem.
I look forward to 3+ hours of sleep at a time sleep.
I look forward to going on off-trail hikes with the boys with Noah in the baby carrier.
I look forward to watching my son sleep, memorizing his face instead of checking his breathing.
I look forward to feeling tiny sweet puffs on my neck as he may occasionally nap on mom.
I look forward to letting my vigilance switch to other things.
I am currently sitting in the hospital for the 2nd time after surgery with Noah because he caught a cold and led to aspirating his tylenol, much crying, and refusing everything by mouth. He is on the upswing, and hopefully we will be home soon.
by Courtney Kruse | May 18, 2015 | Blog Posts
On his first birthday he is sweet and happy and funny and all kinds of wonderful. He wakes in the mornings sweetly saying dadamamadada, then he slowly turns up the volume until he is bellowing DADAMAMAMA. When I greet him, he open mouth squeal-smiles and reaches for me. I peel the tape from his face, untangle him from his wires and tubes, and pick him up. He grabs fistfuls of my neck, and screeches as I attempt to silently close the bedroom doors to let the men sleep. My sneaking does no good, and after a minute of playing on the bathroom floor with a washcloth, a brother comes in. He yells and grins, flashing his one tooth at Josiah, and says “BAVABABA pffbbt!” Josiah says “Hi bubba,” and lays his head on his “bavaba’s” lap. Josiah says “it’s your birthday, Bubba” in his sweet scratchy morning voice he sings happy birthday to Noah several times as I shower.
Oh, he is loved!
Mommas have muddled emotions anyway, but this day was hard. I spent the day shooing memories of Noah’s birth-day from my mind as we celebrate chubby happy sweet boy with a family 1st birthday party. I pulled up my big girl pants and made a cake, helped the boys decorate, guided the big boys as they wrapped presents, and we had a party. All while I was watching the clock and memorializing the day a year ago.
Mother’s Day was wonderful this year. We spent the day together. Nothing special happened, but we were together. Last year on mother’s day I was stuck at the hospital with baby who was so jaundiced that I could not hold him. He was so sick and weak he hardly moved. My boys were 2 hours away, and I missed them to tears. Thankful for all my little boys.
I am sad Noah’s baby year is over, and am glad we are past it.
by Courtney Kruse | May 4, 2015 | Blog Posts
Days before Noah was born 1 year ago held so much certainty. I like to think God was smiling in anticipation of His plan to be revealed to us.
The heart of man plans his way, but the Lord establishes his steps. Proverbs 16:9
I knew this baby was different. There was a dream I had early in the pregnancy. I was at a therapy session with my toddler. We were cheering my big boy on with trembling joy as he crawled awkwardly. He never showed his face, but I could see the shape of him, the extra flexible legs, his elbows bowing slightly the wrong way, all his edges extra soft. Part of me wondered if this would be our reality. Whatever this “vision” was, I blew it off as unlikely, but the image and feeling of that dream crept into my mind as I was folding laundry, in waiting rooms, or when little boy bumped in my belly.
20 week ultrasound. Everything looked good except for one slightly enlarged kidney and a little fluid around his heart. Our perfect baby might have something wrong with his heart. After a series of appointments locally, we were sent to see the maternal fetal specialist in Burnsville. After a tense and long appointment, the doctor said the walls of his heart were thickened, and it was squat and round shaped. The nurse mentioned offhandedly as she looked at his file that he had tested positive for Down Syndrome and something else we can’t remember. Dave and my hearts skipped a beat simultaneously. But we had declined testing! She was surprised, and said it must have been a mistake. We were relieved. The cardiology appointment went beautifully, and the fluid around the heart had disappeared. Our baby was perfect.
He did not thump around inside my belly as my other boys. He was subtle. I didn’t feel him until much later in my pregnancy. His movements were not sharp or jarring, but gentle and snuggly. Even as he was inside me he was a cuddler. He would sway and wiggle, his movements only serving to dig in deeper like squishing your toes into warm sand. I felt that cuddly contentment from the inside out. Now his whole body melds to mine as a chubby leggy one year old, trying to be absorbed again by momma. It’s pure love. It’s mutual.
Recent Comments