When Noah was born, his diagnoses, my c-section, and the subsequent upheaval of life, caused our time in Rochester to be incredibly emotionally exhausting. Because we knew about and planned for this surgery, we knew a positive outcome would be forthcoming, we are at peace (and exhausted).
The first two nights he did not sleep hardly at all, and finally last night he was able to rest, though he kept rolling over onto his owie and waking himself up.
Noah’s pain is now controlled, and he is overall feeling better by the hour. Today they did a CT angiogram as well as a bunch of cardio testing “right away in the morning” at 2:30, and as he is coming out of sedation, we are waiting for results. He has not been able to eat or drink anything since surgery, so you can pray his tummy would cooperate. There is no leaving the hospital until he can drink and eat. He also has thrush, which is making eating/drinking more difficult. Pooping continues to be a struggle.
When he is upset, riding the wagon in the elevator is his favorite thing. What did sick kids do before games/movies on the kindle?! It has been an extremely helpful tool to get him to calm down or distracted from hard things.
Thank you for praying, friends. It seems the worst is past. I have been reading the psalms.
For the Lord is good; his steadfast love endures forever, and his faithfulness to all generations. Psalm 100:5
In the last episode, Noah was all fixed up. This is the episode in which we buzz around trying figure out his quirks to help him feel better.
The first meds they tried with him were unsuccessful. He is like a pain killer connoisseur. He samples and spits, literally as he vomits and figuratively as his body does not respond. They were trying some pretty heavy meds on him, to no effect.
People with Down Syndrome sometimes lack enzymes required to break down and use drugs. The tricky thing is that not every person is the same, and there’s not research to know which things are going to be most helpful (or not).
Last night was misery. Not much helped. They changed the plan hour by hour. He was in pain and couldn’t relax to sleep. He was crying and saying “no, no, no” most of the night.
If he were to poop and pee on his own, it would make a big difference to how he feels. Good news is he is drowsy and doesn’t care about all the wires and tubes sprouting from him too much yet. The chest tubes keep putting out fluid, so unfortunately it stays. One other line came out today, so he’s down to 4.
I keep reading in the Psalms about God’s closeness and power. The God who created all things personally cares about Noah. We know this little fix will help Noah on this earth; but we look forward to complete healing in the life to come.
“Doctor, French Fries.” Was the promise we made yesterday as we took Noah to all the pre-op appintments and tests required before surgery today. But in reality, it was more like, “Doctor, Doctor, Doctor, Doctor, Doctor, French Fries, Doctor, Doctor, Doctor, Doctor, Doctor, swimming pool, park.” I am thankful for the thouroughness of Mayo and his doctors, but wow. It was gruelling.
Through these appointments we discovered Noah has a LEFT ascending aorta. Look up the anatomy of an aorta, it always arches to the right. We discovered Noah hates the covid test the most. The lady made his nose bleed, and the result was of course negative. We discovered Noah is creeped out by wires. The ECG was a big deal, but the tech was patient, and eventually he cooperated.
He swam, played at the park, and slept with Mom and Dad for part of the night. At the end of the day, he cozied into the hotel pillow and said “sleep happy.” It was a perfect ending to a trial- filled day.
6:30 am we reported (a little late) for his surgery. Woody and Noah were rolled into the OR at 8am, and we didn’t see him again until almost 3. It went as planned, and that artery is moved to it’s proper spot. The surgeon said the diameter of his ribcage was small, and caused additional reason for the artery to press on his esophagus and trachea. We are relieved.
Praise God with us presenting us with this plan!! This is the start of an easier time eating and breathing, and should help him be more independent as he grows up.
Recovery is going to be rough. He is waking for a few minutes at a time to be sad and try to pull out tubes, but otherwise is sleeping. Pray often for his comfort, especially these first few nights.
He heals the brokenhearted and binds up their wounds. Psalm 147:3
The greatest healing comes from our creator. He does all things well. Noah has rolled the dice, and won against odds over and over. Only by the grace of God is Noah alive (and truly any of us!) This moment is a gift. Praise God.
11 For he will command his angels concerning you to guard you in all your ways. 12 On their hands they will bear you up, lest you strike your foot against a stone. Psalm 91:11-12
Noah is having a surgery Friday to move a major artery that wraps around his esophagus and trachea, affecting swallowing and breathing.
God has gone before us, and Mayo has arranged to fly in the international expert for this type of surgery since his anatomy/case is a little different. We are humbled and thankful for this amazing opportunity for medical care while so many in this world don’t have access. But isn’t it just like God to provide for our needs before we even realize we need to ask?!
We are heading to Rochester this morning for tests and appointments, and are planning to stay a while.
We don’t have any needs at this time other than prayers. Noah is developmentally like a 3 year old and does not understand all that will happen. Prayers for his comfort, peace, healing, and that he will not experience trauma.
I will try and update the blog frequently. Thank you for your prayers and support!
I like to think about it as a day to remember “they” are truly one of “US!” Noah holds physical, character, and personality traits which are more similar to members of our family than to others with Down Syndrome.Noah is just one of the guys around here. He gets in trouble in all the typical toddler ways. These are some typical sound bytes:
“Mom! Noah’s in the bathroom, and the potty is open!”
“Drop the legos!!”
“No, no grab grandma’s glasses.”
“No bite!”
“Babies don’t like to wrestle like that, play gently with him.”
He is your typical kid. He likes the things kids like. He plays the way little ones play. He has a range of emotions throughout the day (even the unpleasant ones!). He brings us joy because he is a child, and children deliver joy to their parents! I am thankful for his sweetness as I am thankful for all my boys.
Celebrate World Down Syndrome Day! Created in God’s image. Just like you.
James 1:17 Every good gift and every perfect gift is from above, coming down from the Father of lights with whom there is no variation or shadow due to change.
Best snuggler. I not only get to enjoy this sweet stage of snuggles for longer than my other kids, and he is the best of the best. The extra flexibility and low muscle tone makes him melt, (and I melt a little too!). His head rests on my shoulder, and his body relaxes, and I feel his cheek smiling against mine as he says “dadada.” (yeah, we are still working on that).
Extra smiley.
Look at him! You can’t help but smile, and he reciprocates. He shows off all his jack o lantern teeth, and squirm with delight.
Extra beautiful.
Every child is gorgeous. Truly. I have thought this about each of my children, and random stranger children everywhere. This baby is extra beautiful. I could stare into those round eyes all day. Nobody has eyes like Noah. They are all fireworks and sunflowers. “Brushfield Spots.” Abnormality, sure, but breathtaking.
Extra delightful.
If he could talk, these would be his favorite words- “pick me up, bounce me, swing me, hug me, tickle me!” They would be said with laughter. He doesn’t squirm away while being held, he just wants me. I pick him up and he squeezes me around the neck as hard as he can, then yanks my glasses off my face and chucks them across the room. (Stop laughing.) “No, no!”
Extra leisurely.
Every milestone is awaited with bated breath, and sometimes I have to just wait and breathe as I wait. When he does finally say “no!” or sits up on his own, or gets a cheerio in his mouth on his own, or army crawls dangerously to the edge of the steps, sometimes there are happy tears
Extra patient.
His brothers love him. Sometimes it gets to be too rough. Siah knocks him down occasionally, and there are tears and angry cries.
Extra good.
He never asks to be fed. Never ever. He might get tired and rest his head on the floor, but he only really fusses when something is really really wrong. Some people with Trisomy 21 sometimes don’t have as sensitive nerves. So if he is cold or hungry or his diaper is scratching him, it’s no bother. He smiles right through. This is partially why he has low muscle tone, and we are constantly “revving him up” to help him activate. This is also responsible for the teeth grinding.
Extra tough.
For the hundred blood draws he’s had in his little life, he is easily comforted. Sometimes he doesn’t cry at all. He has endured more medical tests and procedures than our entire family combined. Many of them are painful, but he bounces back quickly, and has only just started being leery of people wearing blue gloves.
Extra playful.
His brothers love him. Josiah lays his head in Noah’s lap as Noah whacks his face. They both giggle with delight. There was a time when Noah did not interact at all. He sat. However Josiah with little direction from us or feedback from Noah talked to him, made silly faces at him, brought him toys, hand over hand helped him touch and play with toys. Noah suddenly “turned on” and now PLAYS with his “iah!”
He requires extra from mom too. I have to be extra vigilant as I watch him to ensure he is breathing well as he sleeps. All night long. I have to be extra attentive that he isn’t aspirating his drink at lunch. Extra protective when the boys pick him up or play with him to ensure he doesn’t bend the wrong way. Extra watchful for symptoms that would indicate leukemia or worsening breathing or seizures or new surprise problems we have yet to uncover… Extra scheduling for his next therapy or doctors appointments. Extra organized so I have my concerns written down, research articles filed and ready to discuss with doctors, and collecting and filing of insurance papers. Extra research as I read about his biochemical and nutritional needs, constipation cures, and ways to help his development. Extra cooking as I prepare different meals to accommodate food allergies and sensitivities in the family. Extra coffee when I have spent the night fixing oxygen tubing, and sucking snot from his extra narrow nasal passages instead of sleeping. Extra patience and energy for the domestication and education of 4 boys.
Our family has to be extra patient when mom has to go away with Noah for a therapy appointment. Extra supportive when Grandma or Daddy to give up their day so mom can run with Noah, or take care of him so I can adventure with the big boys. Boys have learned to be extra gentle. They have learned to share mom and with each other.
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