| CARVIEW |
Select Language
HTTP/2 200
x-robots-tag: noindex, nofollow
content-type: text/html; charset=UTF-8
expires: Wed, 21 Jan 2026 10:59:42 GMT
date: Wed, 21 Jan 2026 10:59:42 GMT
cache-control: private, max-age=0
last-modified: Mon, 01 Sep 2025 06:42:40 GMT
etag: W/"a3a7146cdc525e0118e4ac08593193ab58792e70b024b0e801957dfe9ec6a713"
content-encoding: gzip
x-content-type-options: nosniff
x-xss-protection: 1; mode=block
content-length: 33515
server: GSE
alt-svc: h3=":443"; ma=2592000,h3-29=":443"; ma=2592000
melsdream
It's really hard to be six, contending with the world that's suddenly changed so dramatically. It's changed for all of us--but she's the one I worry about the most.
I am a freaking tired Nana. *sigh*
They tried to extubate the wee one Monday—this while the
parents were pulled together for a ‘family meeting’ with the medical team
(surgeons, cardiologists, occupational therapists and all their ‘fellows’ that
gather ‘round them like a flock of geese).
They closed his chest on Sunday. Much like the other surgery, they struggled to get his blood pressure regulated. It would seem, after a couple blood infusions, that he's doing much better. The patch over his little opened chest was bad enough--add paleness to that mix and.......I didn't share any of the photos with Bug until I felt they were 'okay' enough to share with a six year old.
We've been up front with her, best we can, since he was born. She no longer talks in terms of 'when' her baby brother comes home, it's now 'if' he comes home. Even with a successful surgery, there's still a long healing process with loads of complications that could change everything. Today he's three weeks old--we didn't think he'd ever see that and we're all blown away and so blessed that he's been able to.
The surgeon has called the hospital every two hours since the surgery. As the professor of surgery, he's got a vest interest in the wee one being able to go home with his parents, even if it means some degree of medical intervention. The parents want that--the desire is to give their baby a chance of life with a loving family, no matter the circumstances. There's no timeline, no guarantees--but the girl and her partner want a chance to bring the wee one home and to just love him because he's a precious thing.
I tell people the girl's not MY daughter, MY child, MY....anything. She's a child of G-d and I have the privilege of having her in my life to love.
The girl has a clearer understanding of what that means today.
She's done a wonderful job in the stinky circumstances. I'm proud for her and proud of her. She's had to make decisions I never dreamed she'd have to make....and made choices based not on her own selfish desires, but out of love.
We're so immensely grateful and overwhelmed by the loving support of people we know..and so many we don't know but surely WANT to come to know. Friends, family, friends of friends,family of friends, coworkers and compassionate strangers have given to help with costs so the girl and her partner can be with the wee one. There's been so many.
It's been emotionally overwhelming to be in the circumstances we've been in--and it's been equally emotionally overwhelming to break through barriers because someone let people know there were barriers that were getting in the way--physically, emotionally, financially and spiritually.
Frankly, we were all too busy dealing with the chaos and pain that came with the package. But that didn't stop others from chasing solutions and making things happen.
I get teary eyed just typing that out.
So may people have reached out to help. It's been amazing....
Today the wee one is three weeks old.
We didn't anticipate having him this long--
We didn't anticipate there was another solution out there -- even if it wasn't a 'perfect solution', it was a chance,
And he's beat the odds so far.
Not without major amounts of drama--(I swear he's a drama magnet.) but three weeks is a miracle. Every day is a miracle.
He's got 2 parents that love him without fail. And a big sister who's rooting for him and wants him to be able to come home. She's six years old and shouldn't have to contend with this--but she's contending with it well....asking hard questions and supporting mom and dad with great love.
And she loves her baby brother. She loved him before he was born and she'll love him passionately forever.
She was going to be a giraffe for Halloween--and opted instead to be a cat. I suspect she'll change her mind again before trick or treat happens, but she'll have ears, nose, paws and a tail to be a cat any time she likes. Nana's a sucker like that....
And she now has a stuffie just like her brother's--so when she wants to pat him and whisper to him, she can whisper and pat the stuffie--cuz there's one laying next to him in Philadelphia and I'm SURE the messages she whispers get to her baby brother.
She spent the weekend whispering to the stuffed animal, carrying it with her from room to room. That's just a small example of a great love.
We'll all keep doing whatever gets placed in front of us--and we'll do it a day at a time. We'll all go to bed at the end of the day drained....but we go to bed knowing we've loved well.
Whole hearted love--without reserve.
And somehow, we'll get the energy we need to do it all over again when the sun comes up--no matter how long or even IF the head's made the pillow.
I know where that energy comes from--and it's not from me. I can't muster up nuffin' right now--except the commitment to do whatever's placed in front of me with great love--because it's not right to cheat others (and yourself) by doing less.
Bug reminds me of that--even with pointy ears, fuzzy paws and a swishy tail.....
She's brilliant like that.
And so I'll pay attention and follow the lead of the six year old.......
I'll do whatever needs done TODAY and I'll do it with great love.
Attempts to remove him from the machines controlling his breathing weren't successful and didn't lend to the hope of something different for this small fella that's my grandchild.
melsdream
Saturday, February 18, 2017
The Crud
I'm battling the crud--it's the same crud that landed Little Mister in the hospital this week.
That's where he remains. That's why I have this 'free weekend'...so I can battle the same crud that Little Mister gave me. Bless his little heart.
Bless his little one chambered heart.
Man......That third surgery seems like it's a lifetime away.
We're not even sure he's going to qualify for a third one.
We're graced to have had the other two. And I never forget how graced we are to simply have HIM...crud and all.
Hospitalizations and all.
Weekends spent playing nurse and all.
Shared CRUD and all......
Life goes on. Our 'new normal' is now.....normal.
It's odd to be home on the weekend. And it's not just me.... Even himself has been at a loss while I've been home. He keeps thinking we need to cram everything into today.
"No no--that's TOMORROW we have to cram everything into. Today is ---I don't know what it is, but it's not the 'cram everything into one afternoon' day!" *cough cough* "Besides....I'm sick with the crud--remember?" :-/
He just shakes his head and walks off.
'Drink more water' he says.
'Just rest' he says.
'I'll get that--stay still.' he says.
I'm gonna feel better tomorrow come hell or high water. I can't take much more of today. I mean--seriously. I don't do 'cater to Mel' well. I do 'suck it up and keep moving' really, really well.
If I didn't know that before, I know that very well now.
The past year and a half has been about sucking up a whole LOT of stuff....and remembering to 'just keep doing whatever gets placed in front of you'.
I'd say we've done GOOD at that.
All of us.
And if I didn't note it before, I'll note it now.
The girl is amazing. And I mean A.M.A.Z.I.N.G. She's been 'the mom' through all of this.
From birth to this minute of the day---she's been nothing short of amazing. She's more than 'her mother's child'....she's utterly and completely amazing.
And she has the crud, too.
We're a 'sharing' kind of family.
Hey.....maybe she gave it to me AND to Little Mister!
I think I'll text her to thank her for gracing me with this day of torture with himself and let Little Mister off the hook. :-D
That's where he remains. That's why I have this 'free weekend'...so I can battle the same crud that Little Mister gave me. Bless his little heart.
Bless his little one chambered heart.
Man......That third surgery seems like it's a lifetime away.
We're not even sure he's going to qualify for a third one.
We're graced to have had the other two. And I never forget how graced we are to simply have HIM...crud and all.
Hospitalizations and all.
Weekends spent playing nurse and all.
Shared CRUD and all......
Life goes on. Our 'new normal' is now.....normal.
It's odd to be home on the weekend. And it's not just me.... Even himself has been at a loss while I've been home. He keeps thinking we need to cram everything into today.
"No no--that's TOMORROW we have to cram everything into. Today is ---I don't know what it is, but it's not the 'cram everything into one afternoon' day!" *cough cough* "Besides....I'm sick with the crud--remember?" :-/
He just shakes his head and walks off.
'Drink more water' he says.
'Just rest' he says.
'I'll get that--stay still.' he says.
I'm gonna feel better tomorrow come hell or high water. I can't take much more of today. I mean--seriously. I don't do 'cater to Mel' well. I do 'suck it up and keep moving' really, really well.
If I didn't know that before, I know that very well now.
The past year and a half has been about sucking up a whole LOT of stuff....and remembering to 'just keep doing whatever gets placed in front of you'.
I'd say we've done GOOD at that.
All of us.
And if I didn't note it before, I'll note it now.
The girl is amazing. And I mean A.M.A.Z.I.N.G. She's been 'the mom' through all of this.
From birth to this minute of the day---she's been nothing short of amazing. She's more than 'her mother's child'....she's utterly and completely amazing.
And she has the crud, too.
We're a 'sharing' kind of family.
Hey.....maybe she gave it to me AND to Little Mister!
I think I'll text her to thank her for gracing me with this day of torture with himself and let Little Mister off the hook. :-D
Thursday, March 10, 2016
Sunday, January 24, 2016
The love of a sister....
It's one of my favorite photos-- It's the day of being reunited, of Bug holding her baby brother on his return to Iowa......
*sigh*
Bug tries really hard. REALLY hard.
It's really hard to be six, contending with the world that's suddenly changed so dramatically. It's changed for all of us--but she's the one I worry about the most.
Everything she's ever known has changed.
She struggles with dealing with it all.
I struggle in helping her deal with it. But we try to muddle through the best we can. Some days it's easier than others.
Today wasn't one of the easy days. She just didn't want to leave. That'd be why we had an upside-down child when it was time for Bug to get things picked up and get in the car so Nana could take her to see her brother and meet up with mom and dad after her weekend with Nana and Grandad.
She just didn't want to go.
Better to stay with Nana and Grandad where she was the center of attention, had plenty of activities and stuff to do with a couple adults who actually had the time to just do stuff with her. That's rare in her world now--which makes it harder for her to leave a place where she does have it.
I'm not sure how to make it easier for her. It's not that I've not offered more, spoken to the parents, made arrangements for the 6 year old/mom/dad so there could be 'alone time' with the 6 year old....but it's fleeting and ends too quickly.
She loves her baby brother.
She told Santa what she wanted for Christmas--it was for her baby brother to get better.
She made a wish on the wishing tree for her baby brother to get better. She makes wishes on falling stars--those wishes are always for the same thing....for her baby brother to get better.
We all want that.
We all wish for that---
But in the interim--I wish for Bug to rest and just FEEL the love we have for her. Cuz it's huge and unending. And it just freaking breaks my heart that she struggles so much right now....
Tuesday, October 27, 2015
7 weeks and a visit to Philly--
We spent a long weekend in Philadelphia--the 6 year old desperately needed to see her mom....just about as desperately as the mom needed to see the 6 year old. And Nana needed to see the wee fella. So--Nana sacrificed the 'girls day out' activities to sit with the wee fella. Someone had to be there, dontchaknow...and the two of them really needed the time alone.....with each other.
He's horribly pale and horribly small. He's gotten himself to a bit under 7.5 pounds--which is under one pound of growth since his birth, seven weeks ago. They won't take that ventilator out until he shows five days of continuous weight gain--significant weight gain. His little body needs that extra bit to give taking him off the ventilator a chance to be successful. Of course they're concerned about the lack of weight gain and growth. You'd not know that from the conversations the mom has with me or anyone else. I'm concerned about her ability to 'see' what's true at this point..especially when she told me that she still has hope the baby can pull himself out of it and go home for the Christmas holiday.
He's not coming home for the Christmas holiday--they made that abundantly clear a few weeks ago. IF he progresses to the point of 'release', the release would local. They won't endorse taking him back to Iowa. Somewhere she lost that reality. I spoke with a social worker I happened to run into, privately, about my concerns. She assures me some degree of that denial of reality is normal--but she also told me they'd visit with her about where things were at for the wee one. He's remained in the cardiac intensive care unit the entire time for a reason. The social worker had wonderful things to say about the mom and her devotion to her family. She's an awesome mom--I do worry this is taking a toll on her emotionally....I just do.....
The good news is he's receiving excellent care--24 hours around the clock--he has his own private nurse assigned just to him. They know him very well. So they know what to look for and what's
'normal' for him.
And I'm grateful for how well she's being taken care of at the Ronald McDonald House...and what a wonderful job they did with the 6 year old while she was there. They were amazing. The families there are all dealing with such hard circumstances. It's hard to see your circumstances as 'worse' when you see some of the other hardships and traumas they're contending with. Everyone's in the same boat, trying to hang on to hope and be there for their child. I'll never, ever pass by one of those boxes without dropping something in. I never stopped to think it would be my family in need of their houses........but it is. So many of us seem to think we're somehow exempt from that one. It's a hard wake up call to realize we're not....
It was a very nice, very NEEDED weekend for the family--myself included. I needed to know where things were at for the wee one who, honestly, is soothed into sleeping the day away and is only awake with his eyes opened maybe once a day when there's some kind of discomfort/pain involved.
I needed to know what was true because I knew it wasn't what gets posted or photographed. And I needed to get some time with the mom to challenge some of the things she just wasn't seeing. It's the perspective that comes with fresh eyes. Even if she didn't want to hear it, I know she did.
There's a hard road here. It's not suddenly become easier because a surgery was successful. The measure of success was in surviving the surgery and the recovery.
And we're not there yet......halfway, maybe--but that other half counts for a lot.
Sunday, October 18, 2015
2nd place cheer
I am a freaking tired Nana. *sigh*
I won't do less than I can, but I fear I'll burn myself out before we end this race. LOL. Mostly cuz this bird ain't a chick, dontcha know.
This weekend was, as is every weekend, Bug time. And I like to DO during my off time. Why would it surprise me that Bug is the same way?! We cut back plants that froze in the 27° autumn morning (it IS autumn!). We bagged up 175 treat bags for the annual trick or treat night, and me made a ghostie tree house decoration...which I've yet to make room for. Ummm...mostly cuz I just returned home. Bug and I spent the night at a hotel so we could arrive bright and early to get ready for her "cheer" competition. I wasn't about to try to load her into the car so we could drive an hour and a quarter....and arrive at 6am to get hair done and make-up applied (6.5 years old and she needs make-up to bounce around and tumble and wave pom-poms?!). *ahem* Yes....well...we stayed at a hotel and had a girl's night out while grandad stayed home and peacefully watched the baseball game. LOL.
And Nana took her where she needed to be so they could take 2nd prize. Not bad for a bunch of ADHD kiddos. LOL. OMG those ladies that coach those kiddos deserve a medal, I swear!
And next week...we'll be in Philadelphia for a long weekend, the Bug and me. The mom wants to see her kiddo-she's not seen her for 5 weeks. And she "Needs to see my mom". Which is probably true after her week. *sigh* It's not been a very 'happy' week. But we'll just keep trudging. What else is there to do? Pray and keep doing whatever gets placed in front of us. That's all we can do right now....
I'm looking forward to seeing the wee fella and his mom...and I'm looking forward to the 4 hour layover in Chicago with the 6 1/2 year old.
...k....one of those 3 things is a lie. LOLOL!
Wednesday, October 14, 2015
Four months plus 9-12 weeks........
They tried to extubate the wee one Monday—this while the
parents were pulled together for a ‘family meeting’ with the medical team
(surgeons, cardiologists, occupational therapists and all their ‘fellows’ that
gather ‘round them like a flock of geese).
The removal of the tube came with a bit of drama in and of
itself. The surgeon argued with the
cardiologist before the weekend that the wee fella needed a few days of ‘rest’
before they removed the tube—they’d just inserted a tube to drain fluid from
his lungs and he thought the month old baby could use a weekend of recuperation. The cardiologist argued that the process
needed to begin—the sooner the better. The
surgeon won—he’s the head professor for surgery at the University. But then the cardiologist is the professor of
cardiology….talk about an “A” team…..LOL
The weekend was far from ‘stress free’ for the wee thing,
but the level of issues didn’t reach ‘high risk’.
The tube came out and the family met for over an hour with
the “A team”.
At this point they see the recovery much as we do—filled with
twists and turns and issues which need to be attended to right where he’s
at. He’s progressed (drainage tubes are
out, pacing wires are removed and they’ve started him on feedings through a
tube) but it’s been a slow progression, wrought with one issue after
another. The chest tube to drain the fluid that’s surrounding the lungs
was a result of the feedings they introduced—each step forward seems to come
with a ‘cost’.
The bottom line is
the baby won’t come home between now and the second surgery which is suppose to
occur at 4 months of age. That’s three
more months in Philadelphia IF complications don’t push the surgery back a
month or two. And then there’s the
recovery time from the second surgery….9-12 more weeks.
At best we’re looking at January for surgery—that’s IF the
surgical team doesn’t take off for Tahiti on the Holidays and IF there’s no
complications (*insert sarcastic laughter*).
And then there’s the 9-12 weeks recovery time……That pushes us into May.
MAY….
M.A.Y.
*sigh*
The tube went back in last night. He was struggling so hard his chest was heaving….and
the girl was concerned because he ‘looked terrible’.
We knew the odds were they’d have to re-intubate, but still……..
The surgeon, unaware the mom was behind the curtain pumping breast milk, entered into the room and talked to the wee one—lovingly calling him an ‘ungrateful little jerk’ after all the arguing he’d done to get him the weekend of rest! Darn that she didn’t take a photo of his face when the she popped out from behind the curtain and whole heartedly agreed. LOL
It’s hard. Being here while all that’s going on there…..knowing we don’t get to have the wee one home between surgeries, that he’ll continue to live in a hospital, isolated from his family and his home. Knowing the girl will continue to be there—separated from her daughter and partner……
We knew the odds were they’d have to re-intubate, but still……..
The surgeon, unaware the mom was behind the curtain pumping breast milk, entered into the room and talked to the wee one—lovingly calling him an ‘ungrateful little jerk’ after all the arguing he’d done to get him the weekend of rest! Darn that she didn’t take a photo of his face when the she popped out from behind the curtain and whole heartedly agreed. LOL
It’s hard. Being here while all that’s going on there…..knowing we don’t get to have the wee one home between surgeries, that he’ll continue to live in a hospital, isolated from his family and his home. Knowing the girl will continue to be there—separated from her daughter and partner……
I need to stay grateful that we’re THIS far, that the wee
fella is continuing to fight to come out the other side of this. And I need to give note to the fact that the
mom, who’s stayed with him the entire time (except for one night at home to
make special cookies for the staff at the hospital in Iowa—yes she IS her
mother’s child……) has an office in K.O.P. which is right down the road from
Philadelphia and that her boss has approved her working from the hospital, from
the office in K.O.P., from the room at the Ronald McDonald House where she’s
staying—he doesn’t care where she does her job as long as she does it. I need to stay grateful that the grandmother,
who’s retired, can stay with the dad during the school week and help with the
daily ‘stuff’ while the 6 year old skips off to school……
If none of that were available, I don’t know what we’d
do and where we’d be in this whole ordeal.
What young family—what OLD family could (physically,
emotionally & financially) afford to stay with their child for six months
while they fight for their life……a thousand miles from their home.
I don’t believe that the second opinion just ‘happened’ to
be in Philadelphia any more than I believe the fact that the office she worked
from multiple times a year is right up the road is a ‘coincidence’.
Nor do I believe he randomly ended up with the “A team” that
he has.
And I don’t believe he was gifted to our family by ‘a fluke’.
But I do believe in prayer.
I do believe G-d hears. And I know His hand has been in this one
since before we knew what ailed our wee little fella.
And so we all continue to pray……and hope…….and wrap our heads
and our hearts around what we get to do TODAY to make a difference in the lives
of the people we care about and hugely love….
Monday, October 05, 2015
4 weeks...2,034 pounds...
"Heart warriors", that's what they call babies with congenital heart defects. That's what we have ... a heart warrior.
He's four weeks old today. And they've been able to whittle him down to four pumps--we started at 14. I'd say that's great progress.
Chest is back together--they removed the "oversized bandaid" 2 days ago. There's talk about weaning him from the ventilator and potentially moving him from the cardiac intensive care unit to the critical care unit. Maybe by the end of the week....maybe by the start of next week when he turns five weeks old, G-d willing.
It's a bit of a haze--it seems longer than four weeks, but it's only been four. Maybe that's an indicator of what the heaviness does. Maybe it's just the nature of the beast.
There has been a lot of good in the past week, a bit of drama (which the wee one is becoming famous for!), a few tears and a whole lotta loving. Seems circumstances push the envelope on the loving bit. At least it does for a whole bunch of us.
There are those that go the opposite direction.
The ones that distance themselves emotionally from the details and day by day/hour by hour reports on how our baby is fairing. It's their way of insulating themselves, or attempting to convince themselves that they've insulated themselves. I doubt it will work. And, because it's fairly readable, I doubt it's understood by those on the other end of the spectrum--the ones who wear their heart on their sleeve and get teary asking questions and talking about the little fella.
I don't land on either extreme. I switched into "doing mode" and find myself in tears at odd times....like dining out for lunch and losing it as a group of gals set up for a luncheon date with a new mom they were showering with presents and attention. I remember the fleeting "We should have been doing that for the girl" thought....
Seems people accept that from me--the "doing mode"...not the teary eyed stuff. People get nervous when that happens. The good news is, I know how to "self correct". Those teary eyed moments are very brief.
I'm too busy to indulge. There's the job to do, the house and yard to maintain (Himself just returned from visiting his mother and kids.), and a six year old that needs consistency and stability....and routine. So, because I promised I'd take care of her (along with the grandmother), that's what I've been doing....and checking in with the girl in Philadelphia, and doing errands for her and tending to the house and some of the yard work there.
But we took the 6 year old to the pumpkin patch and the pumpkin fest that we've done every year since she came into our lives. We bought gourds and two big pumpkins for her house....not as big as the twothousandandthirtyfour pound winning pumpkin, but bigger than the ones I took home....cuz none came home with me.
Himself says it's just a plot to make a return trip to the pumpkin patch so I can buy more pumpkins and gourds.
Of course that's true.
Duh.
Anyone who knows an ounce about me knows that's true.
I'll also have to buy for the 6 year old again....cuz she'll be with us for Halloween and she'll need a pumpkin here, too.
He hasn't figured that out yet....nor has he counted on the pumpkin we'll be carving for the wee one.
Yup.
I think we'll carve that pumpkin a simple heart.
After all, the wee one is a heart warrior.....
Monday, September 28, 2015
The Guardian of the Feeder
(When you finally get an evening free -- this is what you opt to do?! LOL Nice of her to sit mostly still for me!)
3 Weeks and 6 and a half years.......
We've been up front with her, best we can, since he was born. She no longer talks in terms of 'when' her baby brother comes home, it's now 'if' he comes home. Even with a successful surgery, there's still a long healing process with loads of complications that could change everything. Today he's three weeks old--we didn't think he'd ever see that and we're all blown away and so blessed that he's been able to.
The surgeon has called the hospital every two hours since the surgery. As the professor of surgery, he's got a vest interest in the wee one being able to go home with his parents, even if it means some degree of medical intervention. The parents want that--the desire is to give their baby a chance of life with a loving family, no matter the circumstances. There's no timeline, no guarantees--but the girl and her partner want a chance to bring the wee one home and to just love him because he's a precious thing.
I tell people the girl's not MY daughter, MY child, MY....anything. She's a child of G-d and I have the privilege of having her in my life to love.
The girl has a clearer understanding of what that means today.
She's done a wonderful job in the stinky circumstances. I'm proud for her and proud of her. She's had to make decisions I never dreamed she'd have to make....and made choices based not on her own selfish desires, but out of love.
We're so immensely grateful and overwhelmed by the loving support of people we know..and so many we don't know but surely WANT to come to know. Friends, family, friends of friends,family of friends, coworkers and compassionate strangers have given to help with costs so the girl and her partner can be with the wee one. There's been so many.
It's been emotionally overwhelming to be in the circumstances we've been in--and it's been equally emotionally overwhelming to break through barriers because someone let people know there were barriers that were getting in the way--physically, emotionally, financially and spiritually.
Frankly, we were all too busy dealing with the chaos and pain that came with the package. But that didn't stop others from chasing solutions and making things happen.
I get teary eyed just typing that out.
So may people have reached out to help. It's been amazing....
Today the wee one is three weeks old.
We didn't anticipate having him this long--
We didn't anticipate there was another solution out there -- even if it wasn't a 'perfect solution', it was a chance,
And he's beat the odds so far.
Not without major amounts of drama--(I swear he's a drama magnet.) but three weeks is a miracle. Every day is a miracle.
He's got 2 parents that love him without fail. And a big sister who's rooting for him and wants him to be able to come home. She's six years old and shouldn't have to contend with this--but she's contending with it well....asking hard questions and supporting mom and dad with great love.
And she loves her baby brother. She loved him before he was born and she'll love him passionately forever.
She was going to be a giraffe for Halloween--and opted instead to be a cat. I suspect she'll change her mind again before trick or treat happens, but she'll have ears, nose, paws and a tail to be a cat any time she likes. Nana's a sucker like that....
And she now has a stuffie just like her brother's--so when she wants to pat him and whisper to him, she can whisper and pat the stuffie--cuz there's one laying next to him in Philadelphia and I'm SURE the messages she whispers get to her baby brother.
She spent the weekend whispering to the stuffed animal, carrying it with her from room to room. That's just a small example of a great love.
We'll all keep doing whatever gets placed in front of us--and we'll do it a day at a time. We'll all go to bed at the end of the day drained....but we go to bed knowing we've loved well.
Whole hearted love--without reserve.
And somehow, we'll get the energy we need to do it all over again when the sun comes up--no matter how long or even IF the head's made the pillow.
I know where that energy comes from--and it's not from me. I can't muster up nuffin' right now--except the commitment to do whatever's placed in front of me with great love--because it's not right to cheat others (and yourself) by doing less.
Bug reminds me of that--even with pointy ears, fuzzy paws and a swishy tail.....
She's brilliant like that.
And so I'll pay attention and follow the lead of the six year old.......
I'll do whatever needs done TODAY and I'll do it with great love.
Thursday, September 24, 2015
Surgery #1 -- success!
Prayers and positive thoughts hold a lot of weight--I'm convinced G-d hears....
The wee one (pictured looking a bit medicated this a.m. with Ella Stuffie--the one Nana says he can't be without!) went in for surgery at 8:30am was finished at 2pm and moved to recovery at 2:30. The booger took less time getting step 1 (of 3 heart surgeries) done than his Nana did getting a broken leg fixed. :-/ I'd be a little envious, but I'm so flipping relieved I can't be anything but.......relieved....and grateful.
The surgeons were pleased with how surgery went. They'll leave his wee chest opened for 2-3 days before closing it back up. They put a drain in his tummy where fluid had been collecting and they're running tests to make sure there's no reason for concern. The next 24-48 hours are still high risk--it's that delicate balancing act with medications in a wee person. I'll try to remain hopeful-- The stinker has this deal about drama. Time and time again....JUST when you think you can breathe and relax a minute....more drama.....
For the moment, I'll try to remain grateful and relieved for THIS moment to have ended with success.
Tuesday, September 22, 2015
....CHOP
There's something weird about a children's hospital going by "CHOP".
The wee fella had his first airplane ride--at 2 weeks of age. Quite the birthday prezzie if you ask me.
The Children's Hospital of Philadelphia provided the mom and dad with the second opinion--and gave the wee one a 50/50 chance of surviving the first surgery. He'll need three (at least) heart operations and, if he survives, a transplant when he turns 12 or 13.
How could you NOT take the chance? The other option was to do nothing and opt for 'compassionate care'. They took the chance. And the photo is himself arriving at the Philadelphia airport. They were kind and let the mom go with him in the plane. The dad had already left for Philadelphia. In fact, the dad was IN Philadelphia before the baby was.
Mostly because they had the wee fella loaded up and in the plane on Sunday......and decided there was a malfunction with the plane and the equipment necessary for moving the baby from point A to point B. So back they went to the hospital in Iowa City.....and they promised they'd send a different plane and different equipment Monday--which they did. And that's how dad ended up there before the baby! It's also the story of how Nana got to spend the night with the wee fella and mom before they departed Monday. It's also how I managed to make Monday's departure without falling apart. I did all that on Sunday, dontchaknow......
There was something about seeing the elevator doors closing with the mom and the baby ( along with 5 CHOP personnel), knowing that might very well be the last time you see your grandson....knowing your child was going through all this 'stuff' without your physical presence.. *sigh* Still hurts my heart to be here while she's there contending with everything (not alone, mind you....just without me....).
No tears on Monday.
She asked me to be HERE to help take care of the Bug.
So that's what I'm doing....that's what both 'grandmothers' are doing.
No tears today. I grabbed soccer shorts, long sleeve shirts and new shin guards for the Bug since she started soccer practice this evening.
So no tears today--just a lot of lovin' from the 6 year old.
But Thursday....when the wee fella goes into surgery? .....One way or the other, there's going to be tears.
I can hope and pray for 'good' outcomes, but I don't know what's 'good' in this case. I just don't.... So I'll just pray and thank the Big Guy for giving me the time I've had with the wee one and for taking such good care of the mom and dad right now.
And I'll say 'Amen'
.....but I'll be meaning "but you KNOW what I want".....
I'm sassy like that.
And that wee thing--he's so stinkin' cute.....
*sigh*
Thursday, September 10, 2015
The labour of love
He was bourne on Labor Day.
Cute little booger....
I took this just minutes before he stopped breathing in his mother's arms.
He celebrated 2 1/2 hours of normal living before it all went upside down.
Three heart defects, complicated by Downs Syndrome....
20% success rate for each of the three needed surgeries, and subsequent heart transplant, with the healthiest of Downs Syndrome babies--and he's far from one of the healthiest. Yesterday they told us surgery wasn't an option.
There's a second opinion due today from a high caliber children's hospital--but we don't expect the answer to be different. It's a matter of what the parents needed to do to be at peace. Even if the numbers are a bit higher, the doctors aren't convinced he would survive the transfer. Things are just too fragile. Multiple times a minute they're in the room adjusting something or other to sustain life in a very controlled environment.
Attempts to remove him from the machines controlling his breathing weren't successful and didn't lend to the hope of something different for this small fella that's my grandchild.
Today, the parents are allowing friends and family to visit for the first time. It's just been the two grandmothers and two close friends to the parents, to date. It's all they could handle.
Baptised yesterday...tomorrow he'll be removed from the machines and will be held by his mother and father until he finds eternal rest.
No, it's not 'right' or 'fair'.
But G-d chose the two VERY best parents He could find to love this wee fella from the moment of inception to the moment he goes to heaven.
Thursday, September 03, 2015
Oh, the things that make Mel Happy!
It's been a few months now. Good grief..........MONTHS.....
Lots of 'stuff' happens in my life in the course of HOURS--Give it a few days and it's insane to keep track of the comings and goings and doings that make up just a small piece of 'life with Mel'.
Months--holy cow...a whole LOT has happened. LOL Just not much of which I recall, of course.... So, really--not much of importance has happened.
Yaknow.....I'm not sure what, if anything, I've accomplished by taking a hiatus from several pieces of, what used to be, central parts of my routine for a very long time. Maybe nothing was accomplished.
But I don't know that I was trying to 'accomplish' anything.
Yaknow....truth be told, I think the circumstances were in charge of my life more than I was--by my choice, of course. Nothing happens in my world by accident and darn little happens in my life without my permission.
I think it's fair to say I got weary. Still am, some moments. Dealing with chronic pain, chronic lack of sleep and a touch of depression along with some really SCREWED UP thinking--it sorta wears and tears away at you. Or at least it tears away at me.
Heck-- I'm still trying to recover from that broken leg that happened at the end of 2012. I still haven't done it.
No wait....I'm still trying to get the life back that I HAD before the leg broke. I think I'm AS recovered from the broken-ness as I'm going to be.
I don't get to have that life back. I get to move forward with the life I now have, with the circumstances that are now the reality. And really, my circumstances are a whole lot better than some folks I know--a whole lot better than they were before and could be again.
Wow--yaknow....I really do have a good life. Not all my circumstances are the ultimate when it comes to circumstances, but my LIFE is truly awesome.
And....with that--I'm going to get on with what I know to do cuz it's what I know.
Things that make Mel HAPPY!
Lots of 'stuff' happens in my life in the course of HOURS--Give it a few days and it's insane to keep track of the comings and goings and doings that make up just a small piece of 'life with Mel'.
Months--holy cow...a whole LOT has happened. LOL Just not much of which I recall, of course.... So, really--not much of importance has happened.
Yaknow.....I'm not sure what, if anything, I've accomplished by taking a hiatus from several pieces of, what used to be, central parts of my routine for a very long time. Maybe nothing was accomplished.
But I don't know that I was trying to 'accomplish' anything.
Yaknow....truth be told, I think the circumstances were in charge of my life more than I was--by my choice, of course. Nothing happens in my world by accident and darn little happens in my life without my permission.
I think it's fair to say I got weary. Still am, some moments. Dealing with chronic pain, chronic lack of sleep and a touch of depression along with some really SCREWED UP thinking--it sorta wears and tears away at you. Or at least it tears away at me.
Heck-- I'm still trying to recover from that broken leg that happened at the end of 2012. I still haven't done it.
No wait....I'm still trying to get the life back that I HAD before the leg broke. I think I'm AS recovered from the broken-ness as I'm going to be.
I don't get to have that life back. I get to move forward with the life I now have, with the circumstances that are now the reality. And really, my circumstances are a whole lot better than some folks I know--a whole lot better than they were before and could be again.
Wow--yaknow....I really do have a good life. Not all my circumstances are the ultimate when it comes to circumstances, but my LIFE is truly awesome.
And....with that--I'm going to get on with what I know to do cuz it's what I know.
Things that make Mel HAPPY!
....Butterfly invasions on the buddleiahs.
....Buying wee stuff for the grandson we're expecting soon.
....The upcoming weekend with the Bug.
....The freshly painted porch.
....Patio swinging with the hummers.
....Skirts on sale..more than one, even!
....Putting himself on the plane to visit his mum.
....Buying lunch for the couple who sat behind us in Cheddars...and the joy on himself's face when we pulled it off. :-)
Life is very, very good INDEED!
Saturday, May 16, 2015
Waltzing
Why can't I get ahead of this STUFF?!
It seems the solution to every speed bump that's happening pushes me back three steps. I'm accustomed to two forward and one back--but this three back is starting to really piss me off.
Coming off the no longer effective pain medication is making me wonder if it WAS effective. Certainly I wouldn't be having this level of pain if it weren't. And nausea. And sweats. And forgetfulness past what I can deal with. How long do I put up with this before I call the doc and tell them to put me back on what I thought wasn't working cuz it obviously was and I'll deal with the nutzoid thinking...cuz I can't do this much longer.
Talk about nutz...I won't sit down at work cuz I know getting up is gonna surpass the pain of just staying on my feet.
I'm getting really pissy about this. Something has to give.
On the plus side, it's such a treat to leave the house mid morning with "I'm going to go play with the kiddos now!". Sounds just as joy filled as it is.
That's my two forward for right now. It's the three back that's pissing me off.
It seems the solution to every speed bump that's happening pushes me back three steps. I'm accustomed to two forward and one back--but this three back is starting to really piss me off.
Coming off the no longer effective pain medication is making me wonder if it WAS effective. Certainly I wouldn't be having this level of pain if it weren't. And nausea. And sweats. And forgetfulness past what I can deal with. How long do I put up with this before I call the doc and tell them to put me back on what I thought wasn't working cuz it obviously was and I'll deal with the nutzoid thinking...cuz I can't do this much longer.
Talk about nutz...I won't sit down at work cuz I know getting up is gonna surpass the pain of just staying on my feet.
I'm getting really pissy about this. Something has to give.
On the plus side, it's such a treat to leave the house mid morning with "I'm going to go play with the kiddos now!". Sounds just as joy filled as it is.
That's my two forward for right now. It's the three back that's pissing me off.
Friday, May 08, 2015
Subscribe to:
Comments (Atom)