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.
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