Strong thoughts, big prayers, and long nights

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We all need to “Rock on!” as Isaac and Marshall suggested this a.m. as I was sipping coffee trying to recover from a near sleepless night…

So here we are.  And we are at it again… Please send us some good, strong thoughts and big prayers if possible.

First thing this a.m., we learned that a close family member to Marshall’s Aunt Donna’s is very ill.  So we are forwarding some of the good thoughts sent to Marshall…but also keeping some.

Marshall has been a bit more concerning all weekend  His breathing has been “funny” and he has thrown up twice. 

I spent much of the night and early morning holding him, laying in bed awake listening to him breathe, and willing myself to try to not panic. All of this after Dr. Friedman kindly answered my frantic email at 10 p.m. on a Saturday night.

Maybe it is just a cold.

Maybe it is not.

I am again (or is that still?) a lot worried about two yesterdays, yesterday, today, tomorrow, Tuesday, Wednesday….it never ends.

After a day of phone tag, ridiculously high stress, and rescheduled appointments on Friday (that story I am saving for his book…what a nightmare!), Marshall has a day full of tests and travels set for Monday. 

Hopefully an abdominal ultrasound tomorrow with the doctor performing the test (I plead with the nurse “But he is just an ordinary boy with an extraordinary heart!!!”) will reveal the status of his spleen.  Maybe just maybe we no longer have to limit visitors and stay home.

And even more hopefully, our trip to his cardiologist will go well. 

How will we get a hungry baby (he will have time for one feed post ultrasound after being NPO from 3:00 a.m. Monday on) to cooperate for a 2 hour car ride and then more poking/prodding?

It is going to take a miracle.

And fortunately for us, Marshall is one.

Big hugs, strong thoughts, and much love to all…

Does Melvin know he sent a letter to an almost 6 week old?

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I received this in the mail yesterday.

If I said I wasn’t intimidated by the inherent threats this letter implies, I would be lying.  In fact, after I opened it, I did my best not to vomit.

I have four boys to raise, clothe, shelter, and feed in this crazy world. And one day of Marshall’s care at Boston was around $5,100.  This letter obviously shows our insurance didn’t cover his last day of care there.

And I have yet to receive confirmation that the insurance company is covering his birth, surgery, etc. Despite the fact that I stepped through (ok I plowed through) all of their hoops and red tape to get Marshall the care he needed (and still needs) to survive.

So while Excellus is pushing their numbers around and wasting their money (and ours) mailing letters to babies, giving the wild boys every chance I can to grow them into great men is what I will be busy doing.

It is only money, right?

 

Worry Amplified

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As a mama of four boys (one with an extraordinary heart), worry happens.

Especially for Marshall. How do I divide the normal newborn stuff from the heart baby stuff?

Especially now.

There is no way to sugar coat this: Marshall is worrying me tremendously.  His well baby checkup yesterday was fine (he is up to seven pounds four ounces ) but he hasn’t been himself.  Life for him the past two days has been without as many smiles as we typically see. Yesterday was full of too much sleep without as many feeds.

By last night he was congested & his breathing was alarming so I called Boston and followed their advice. 

This morning he threw up.

So I called back.

We have been instructed to watch him closely and report what we observe back to boston by 5. 

Send good strong thoughts please…