And has been holding his mouth and tongue in all kinds of new ways trying to alleviate the teething boo boos.
As the happiest baby I have ever known, he hasn’t at all been terribly grumpy thankfully. Just lots of night wakefulness, weird lip smacking and (oh no) biting…
Maybe this tooth was the culprit behind that viral gunk he had. And maybe just maybe it will be through by Saturday in time for his (I CAN’T BELIEVE IT HAS GONE BY SO QUICKLY) SEVEN MONTH BIRTHDAY!!!
We are at the cardiologist in Syracuse.
It is such relief to be here with Marshall when I wasn’t sure I would ever see Sonographer C and Dr S again. So thankful to be here.
So far yesterday’s bloodwork came back pretty wacky with some numbers. So here is the quick version of a long couple of days:
The bloodwork traumatized four kids.
Today’s echo looks good, if not better than the last.
We go back to Dr S in one week.
Then we go to Boston the week after that.
MILESTONE MOMEMTS: In addition to enjoying solid foods, Marshall can now roll where he wants to go. He will be running in no time at this rate ;-).
This makes even less time for updating you all. Marshall had his first-since-we-have-been-back-home pediatrician appointment yesterday.
Despite the failing heart & scary diapers (which have lessened to my relief), he is doing really well. He got some extra snuggles from Nurse Kim and all of the staff brightened my day with their kindness.
Since our last visit Marshall has grown half an inch, gained 1 pound and two ounces, and successfully mastered his ability to make the ladies swoon and the gentlemen note “what a cute baby you have!”
Now we are off for some labs to see what he is really up to… and tomorrow we go to Syracuse to follow up with the local cardiology team and get an echo.
Please send some good thoughts for our little man.
And please send some extra big thoughts for Noah. His mom’s latest update gave me goosebumps and tears. It indicated he had emergency surgery and was placed back on ECMO…hugs to them.
And many, many, MANY thanks…
Marshall’s first meatball!
There are not enough words to express our gratitude for the kindness and gifts our family received from the Sabino’s this a.m.
They brought me to tears :-…)
And made his first visit to Chuck E. Cheese!
Plus the big wild boys had an absolute BLAST!
Happy birthday to Jamie! And
many thanks to the O’Connor’s for the invite!
What.a.busy.end.to.a.busy.weekend. Our first weekend home included
A (great) surprise visit from my grandparents, swimming, an impromptu dinner with Grandma Penny, Uncle Jim, Aunt Donna, cousins Ben & Nick, the Chuck E. Cheese party experience, a quick shopping trip for a high chair for Marshall, and now a movie in bed for me to rest. I am officially sick (something I don’t have time to be) but offer everyone I see Purell to prevent contaminating everyone…
Noah (of Noah’s Hope for Heterotaxy) is off of ECMO per the latest update I found 🙂
PLEASE SEND SOME BIG, STRONG THOUGHTS & PRAYERS HIS WAY.
And while you are at it, send some for Marshall too please. He has follow up appointments this week with his local teams.
Many, many thanks!
Took over the ginger “king’s throne” (Michael’s recliner) in his absence.
Shhh…we’ll never tell 😉
Being home with all four of my boys yields such tremendous joy & extreme happiness paired with tremendous sadness. I live moment to moment and don’t have a lot of peace in this exhausting chaos.
And the boys and I are constantly wondering when I have to leave with Marshall again.
Marshall’s bloodwork from Monday indicated the heart failure is worse since the milrinone wean. And the echo showed valve regurgitation (another indicator. ) The scary diapers haven’t stopped. And he has started to hurl intermittently again.
But he is soooooo happy.
And the wild boys and I are sooooo relieved to be together again even if everything feels like a mess. (And looks like it too. My house has never been in such disarray.)
I sat at the pool with my boys Monday while Marshall and his dad visited Grandma Martha. As I held two big boys and watched one impress us with his swimming & diving abilities, the two in my arms voiced everyone’s uneasiness about me leaving again.
“Do you have to go back to Boston?” They asked. “Yes, but hopefully not for a while.” I offered.
It is the best I can do.
There is no research I found that could have prepared me for this. Marshall though happy, is so sick. He takes 19 doses of meds per day – administered from 8 a.m. to Midnight. He screams, cries, and gags during the 20 minutes or more it takes to push more meds than his tiny belly can hold into his too thin body.
Then he doesn’t want to eat. And then he has a scary diaper. Then it is time for more meds, more screaming, more tears.
And we have to give him shots twice per day to prevent stroke. I can’t even tell you how awful that feels. What’s worse, he can’t really learn how to roll, play and explore because of the shots. We all have to fall before we can learn how to sit or take a stand. And a fall would more than jeopardize Marshall’s life because of the blood thinners.
And all of this costs a fortune. We have a nearly $500,000 dollar baby. And when a woman like me has four boys to feed in this crazy world, the percentage of my portion of Marshall’s care has tapped my financial resources out. Payment plans are tourniquets on a massive financial bleed.
I am not one who is easily intimidated but honestly I am scared witless at times. Especially those moments I spend waiting for Marshall to catch his breath after a coughing/gagging/wretching spell.
The money will come or go. Dollars mean so little to me. These little people matter most. And I can’t afford to lose any of them.
I feel like a soldier sent home early from war. Home is so foreign and full of memories – not all are good. I would guess I have some post traumatic stress going on from the 9 weeks minus one day stay at “hotel Boston Children’s,” the longest absence I have ever experienced from my wild boys, and the ever present, constant threat which lives inside of my baby.
Please understand I am not complaining. I would never trade any of this for anything. In giving my existence as Tristen, Seth, Isaac and Marshall’s mom a voice, I have to address everything. And I try to always keep it positive. But sometimes giving my fear, worry, experience, and hope some air is all I need to soldier on.
With that, I have some boys to hold.
And more meds to give.
And one little incredibly amazing baby to watch play in his exersaucer while I sip coffee to gain some energy…
Aweeeee ❤
