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.
by Courtney Kruse | Mar 21, 2015 | Blog Posts
Down Syndrome Day was today. I am not sure how to celebrate our first DS day. I am not sure I want to celebrate the thing that has caused so much grief and trouble in the last year.
I hate Down Syndrome.
It has stolen Noah’s health, my time, and dreams.
BUT
I love my son.
He is the fiercest hugger in the family (sometimes they hurt). He grabs fistfuls of my face, and shouts MA-MA-Bob!! He happily hangs out wherever I put him with little protest. He is the best sleepy cuddler, laying absolutely limp on my chest listening to the thrum of my heartbeat, eyes wide open, his tickly hair perfect for kiss planting. I love my squishy baby!
I do not, however, love the part of my son that requires oxygen to sleep, or the part of him that necessitates monthly blood work, just to see if he has leukemia, and the part of him that will cause him to always be striving to catch up to his brothers. Heartache.
If I could separate Down Syndrome and Noah, I would, however there is no chromosome separator.
So this year I am not celebrating Down Syndrome Day. Instead I am taking a break from Down Syndrome. I will take a break from reading books about development, pouring over his labs and searching for solutions, and spending my time looking for the next thing I need to do to help him.
Today, I celebrate Noah.
1 For everything there is a season, and a time for every matter under heaven:
2 a time to be born, and a time to die;
a time to plant, and a time to pluck up what is planted;
3 a time to kill, and a time to heal;
a time to break down, and a time to build up;
4 a time to weep, and a time to laugh;
a time to mourn, and a time to dance;
5 a time to cast away stones, and a time to gather stones together;
a time to embrace, and a time to refrain from embracing;
6 a time to seek, and a time to lose;
a time to keep, and a time to cast away;
7 a time to tear, and a time to sew;
a time to keep silence, and a time to speak;
8 a time to love, and a time to hate;
a time for war, and a time for peace.
9 What gain has the worker from his toil? 10 I have seen the business that God has given to the children of man to be busy with. 11 He has made everything beautiful in its time. Also, he has put eternity into man’s heart, yet so that he cannot find out what God has done from the beginning to the end. 12 I perceived that there is nothing better for them than to be joyful and to do good as long as they live;
Ecclesiastes 3
by Courtney Kruse | Feb 14, 2015 | Blog Posts
Noah has been protected and fortunate that he had not gotten any serious illnesses for the last several months his life! This week Noah’s luck ran out. The boys came home with colds, and last Sunday, Noah got it too. It settled in his chest, and were able to do the nebulizer at home (which sometimes helped, but other times did not), but his cough caused him to lose feedings. We ended up in the ER on Wednesday morning with a very sick baby. He was limp, dehydrated, had high fever, retracting, super high heart rate that I didn’t feel confident giving him albuterol, 2 small wet diapers in the last day, and his oxygen requirement was over quadruple his normal. The ER doc said I could care for him at home because we had oxygen and nebulizer, but would admit him if I wasn’t confident. Good grief! How sick would he have to be for that doc to send us right up to the hospital to get help?! Yes, I am the fool, please help my baby.
By the time we got upstairs, his fever was still raging, because he hadn’t kept down the tylenol. He had really bad vein options for an IV, but the nurses managed to get it on the third try while I held him down and sang birdie songs and lullabies in his ear. We were all sweating when that was over. Noah spent the day alternating between being limp in my arms and crying inconsolably while saline, and steroids dripped into him. The next day it was 2 steps forward and one step back with nebulizer treatments. The fever was gone, he was hydrated, and he was discharged. He had fantastic nurses, and I asked lots of questions.
The pediatricians both remembered us, and were surprised that he hadn’t been hospitalized since leaving the NICU. Silver lining!
Since we are home, he had been doing great but coughed up 2 feedings last night and Dave had to go out for suppository tylenol in the middle of the night. I have never felt a kid’s temperature spike like his did at 4 am today.
Pray he keeps down the milk, the fevers stay away, and for him to breathe easy.
We were just down the hall from where Noah was born, 9 months ago. Thankful for how my broken heart healed. Thankful for the new set of mama bear claws I have grown. Thankful for my sweet snuggle buddy.
by Courtney Kruse | Jan 25, 2015 | Blog Posts
Noah’s appointments 2 weeks ago showed that Noah’s oxygen requirement is now worse! He has BOTH central and obstructive apnea, and his doctor won’t check him for at least 6 more months. We were told he might be done with it before he was 6 months old, but now it looks like he will need it for much longer. (feels like forever!) He now has an appointment with ENT in 2 weeks to see if his airway has any obstruction they can fix with surgery. If it helps him breathe better, we will do it.
It has been a hard several weeks. Noah first assessment from the school district was OK, showing only 1 area of delay, but his “6 month” (which was actually done at 8 1/2 months) showed a severe delay in 4 of 5 developmental areas, and we are watching him for autism, and let’s increase services. I cried. Right there in front of the teachers. And in the shower for a few days.Expectation is tricky. Should I expect? Should I hope for my son to achieve and do great things? Should I lower those expectations? Should I steel my heart to the desire for him to be better? Really, if you have an answer, help me out!
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