This afternoon Simone will be having surgery to close her PDA, an errantly open blood vessel between the aorta and pulmonary artery. This surgery is being touted as The Thing That Will Make Her All Better, and in theory it sounds like an excellent idea. This open vessel is dropping her diastolic pressure and filling her lungs with fluid. It is impeding her progress on the ventilator, and has in fact resulted in increased oxygen needs. Two rounds of medication have failed to change the size of the opening one whit. I have no doubt that a cohort of Magic 8 Balls asked whether surgery is the best option would agree that IT IS DECIDEDLY SO.
Except…she is so tiny. They say her heart is the size of her fist, and her fist is the size of a small peanut M&M. Simone is really not much bigger than the bulbous nosed man on the Operation game board, and as I recall, that game was exceedingly difficult, even when extracting something as large and easy to grasp as, say, the Bread Basket. Admittedly, I did not have advanced surgical training back then (not to imply that I do now, though I have seen my share of televised medical dramas) but I was an uncommonly dexterous child. And today’s operation sounds like the sort of thing that would be possible to perform only via robot or mouse surgeon.
The PDA ligation procedure involves making a small incision in the side/backish area (technical term) of my daughter, lifting up my daughter’s lung to gain access to my daughter’s heart, and either placing a tiny clamp around the open ductus of my daughter or sewing it shut.
The most common complication of the procedure is damaged nerves or paralyzed vocal chords resulting from nicking something unintended during the procedure. Under these circumstances, I would feel much better if the pediatric surgeon would humor me by playing an exhibition game of Operation later this morning before surgery. I would be happy to provide the game itself, and if he can remove even the awkwardly shaped sparerib and the slender pencil without setting off the buzzer, then I will sign the consent forms. I don’t think this is an unreasonable request, seeing as my daughter’s surgeon is not the one up at five a.m. terrified and Googling pda ligation neonatal while holding his thumb and index finger apart to approximate the size of the vessel (or at least I sincerely, sincerely hope not). My nerves are threatening to strike. A reassuring demonstration of agility is the least he can do.
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Oh hon, I have been checking repeatedly to see how you and your baby are doing. I am now praying for you and your baby (and also the surgical team performing the op)
Wish I could do more to be of practical help, but can only say, having had one of my babies in a similar situation, it ( the operation) worked brilliantly and he is now a thriving 4 year old.
Keep us posted if you have time.
Lots of love from Australia
Sarah xxx
Alexa, thanks for keeping us posted. You are very much on the collective mind of the internet as you and Scott and little Simone continue to fight the good fight.
Looking forward to hearing of a successful outcome for your sweet girl.
I have no personal NICU story to share, but all the internet hugs & good thoughts I can muster up are heading your way!
You are an amazing woman. Scott is an amazing man. (A rare condition.) (Just saying.) It stands to reason that your daughter is also amazing. Hold on to that while we, the world, wish you all the best. Positive thoughts from here! And lots of them!
I can’t even begin to imagine how horrific it must be to know that your tiny daughter is undergoing surgery, but as someone who knows a lot of highly specialized surgeons, I can say that those people are AMAZING. Seriously. That guy would be the absolute KING of Operation. He probably played it for fun in between biochemistry and neuroastrophysics. I mean, he may be a total asshole, but he knows what he’s doing and he does it well.
She’s in excellent hands. I know that’s small assurance when you’re imagining exactly what those hands are doing, but still… excellent hands.
I’ll be thinking of you and Scott and Simone today!
Oh, Alexa, it sounds absolutely terrifying…but they’ve got to be better at it than we think. I mean, if you played Operation over and over again every day for years and years, I bet you too could remove the pencil with nary a buzz.
Thinking, as I do frequently, of you, Simone, and Scott, and crossing my fingers hard that the surgery goes beautifully.
definitely think a game of operation is in order, not too much to ask in the circumstances.
and perhaps a follow up game of pick up sticks, just to check the nerves arent also getting to him and making his hands shake!
best of luck simone!!!
Hoping and praying for Simone, and today in particular for the surgery to go well.
Dear Alexa, I can’t even imagine what you must be going through today, all the worry and the fear. I’m thinking of you and sending much love, and wishing Simone a quick, effective, safe, pain-free operation and a great surgeon. There are amazing ones out there, my dear, and remember they have amazing instruments (with amazing magnification) too.
All the best. You and Simone will be constantly on my mind all day.
Alexa – thank you for checking in. I obsessively check to see if you’ve posted anything new.
I think that the Operation game idea should be a mandatory pre-op requirement. Excellent idea!
Thanks for the update. I think the Operation pre-surgerical game is an option on the forms, you just check it off!
Seriously, I do hope that everything will be alright. They sound like they are doing everything they can for your daughter. And you and your daughter will be in my thoughts.
We went through a PDA ligation as well, and it doesn’t matter how insistently the doctors use the word ‘routine’. To see the surgical team wheel him away was just awful.. for me, that scene (like many others) underscored how frustrated we were that our sons had to live through any of this at all… from surgery to heel pinpricks and everything in between.
(deep breath)
That said, the doctors have done countless PDA ligations – from what we were told, it’s the medical equivalent of a beat cop handing out parking tickets. Just remember it’s their legal duty to warn you of the worst possible outcome – we saw dozens of babies get through this procedure with flying colours during our NICU stay.
And, thank the stars, it’s pretty quick. You’ll barely have time to really work yourself into a lather before they’ll be all finished.
You know, just before I logged on I thought of you all, wondering how you were doing. I think my NICU-spidey senses were tingling…
xo
I will be praying for Simone, and for all of you, that the surgery goes perfectly and that it really is the Thing That Will Make Her All Better.
Hoping, praying, and wishing that the surgery goes smoothly and quickly. And let this be the “thing that will make her all better”!
Dear Alexa –
There is so much wisdom in all of these comments: I hope that in at least one of them you’ll find a little bit of solace to help you through this insanely difficult day. I wll be thinking of your family, especially Simone, this afternoon.
Simone, you and Scott (and the surgeon) are all in my thoughts today. praying for great news to report on that thing that makes her better.
We’ll all be thinking of you this afternoon. I’m sure Ames will be watching over his big sister.
Best of luck keeping your nerves out of the picket line.
I am so in awe of your ability to keep your humor and willingness to allow us into your life —
My thoughts are with you all.
Pam
Sending good vibes, thoughts and positive energy from Indiana.
Like Pam, I’m so impressed by your ability to remain articulate and even funny in the face of such a scary event. I will cross my fingers for little Simone and will be checking back soon for an update.
Oh dear! I’ve got everything crossed for Simone, I hope the surgery goes perfectly. I’ll be thinking of you…
So glad to hear an update, even if it is a sort of scary one. And your ability to make me laugh with your writing in the middle of all of this amazes me. You are all still in my thoughts and prayers daily. Good luck and best wishes; can’t wait to hear how everything goes.
I find that what these surgeons are so consistently lacking in interpersonal skills, they make up for with savant-like skills in things that us mere emotional beings could only dream of having. As terrifying as it is, and as dubious as it may seem, I have a feeling that 8 carat diamond size heart of hers is going to be in very capable hands.
Good luck!
Another semi-lurker who’s been checking every day for updates and hoping for the best. I don’t understand how doctors can do some of what they do either, and I was never able to get the pencil out without making the buzzer go off, but I guess that’s why we are editors and writers rather than doctors. Will be sending positive thoughts Simone’s way today. Thanks so much for the update.
Oh, Alexa! How frightening. I am praying for Simone as she goes into this surgery. I’m praying that this really is the thing that makes the biggest difference in how your dear girl feels and progresses. Surgeons have been repairing PDAs for so long now that they are incredibly good at it. (I hear they spent all of the 70′s playing Operation to prepare.) Keep us updated if you can.
xoxo
I can’t imagine. Really. But thank you for letting us know and we will all be rooting for Simone and her mouse surgeon. What time is she scheduled to have this done? I know you are probably a mess with anxiety but we love you and your little girl is so strong, I have no doubts that it will all be ok.
Sending lots of prayers and good thoughts your way. I will be checking back all day to get an update on how wonderful Simone is going to do today. I am hoping for you all that this is the fix she needs to get her on the road home.
My son had this done at about 2 weeks of age and came through it fine. It IS really scary, I know. My comfort was knowing it’s not the actual heart being worked on but a ‘tube’ coming off it. I’m sure your little girl will do fine!
Yes, Operation was a tough game. But did you ever watch the TV show Scrubs? In one episode, they were playing Operation. The punchline was that the surgical intern could not only kick everybody else’s butt, but he could do it in SECONDS. A TV show, yes, but reflective of real life. These guys have very, very large egos. They hate, hate, hate to screw up, which means that if they feel they can do this, they can.
My philosophy has always been that the more a doctor gets paid, the more I trust him/her. I would imagine these high-risk pediatric surgeons get paid quite a bit.
Just another internet stranger weighing in with good thoughts and lots of prayers.
Always (and especially today) thinking “strong baby” thoughts for gorgeous little Simone!
My prayers go out to you and Scott, Simone and her surgical team. Amazing what they can do medically these days, though, isn’t it? Strong baby thoughts heading your way.
Oh sweetie- how scary. I like what Bittermama said- he may be an ass and have no personality, but you can bet he knows how to play a mean game of Operation. NICU surgeons are among the best there is. Small comfort, I’m sure. I’m sorry you have to go through this at all. Good luck Simone!
My niece had major surgery as a newborn, (at Fairview Riverside… don’t know where you are, but probably close…) and she came through swimmingly and is a happy, healthy, almost 1 year old. Today will be hard, but know that you have thousands of readers out here thinking of you and sending positive vibes your way. Take Care!
Simone will be in my prayers today. I can’t even begin to imagine how scary this is.
The surgeons, they have magic fingers. Try to trust in her (his?) abilities. We’ll all be holding our breath with you.
Simone is a tough little girl. She has come this far against all odds I am sure she will go a whole lot farther. We will be praying for you and Simone and the surgeon.
Everyone else already said all the smart comments, so I will just say that I’ll be thinking of you, Scott, and Simone today. Hang in there, dear one.
That sounds terrifying for you and Scott. I don’t think a little demonstration of Operations skills is too much to ask, but he may be busy with other surgeries or golfing so you may just have to trust his ability.
Thinking very, very positive thoughts for you, Scott and Simone.
Prayers and thoughts for a successful surgery for baby Simone. She is a true fighter, and this will just be one more of her wonderous battles she will conquer!
Will be anxious for any updates!
Oh, Alexa, I’m so sorry Simone needs surgery and that you, plural, are going through this. For whatever it’s worth the now-thriving two-year old previously- phenomenally-premature surviving twin I know (and she is a total charmer) needed at least two different kinds of surgery — I forget the exact details — during her time in the NICU. Every bit as stressful, of course, but as I say with a happy ending and I hope, trust, and pray that Simone’s will have the same.
Will be thinking of you, intensely (as I do on most days now). I am sending you all a lot of love and positive thoughts. And I do think, as a scientist, that science has really come a long way and many difficult medical procedures are now performed without any complications. I know Simone is tiny, but these doctors are highly trained and I am sure this is not the first time they have this kind of surgery on their hands. I do understand your fear though, I really do. But I believe this will be fine, and soon enough you will be able to enjoy life with your daughter. Love.
Prayers have been said and specifically said for the surgeon who will be taking care of Simone. Fight on little champ.
Thinking of you and yours today.
Sending my best, most fervent wishes for a safe and successful surgery.
You and Simone are never far from my thoughts.
Just remember that this is what they do. They train for hours for things like this. You are obviously a wonderful mother for having the fear that you do, its only normal. There are many many success stories out there, hold on to that. Think positively and we will all be thinking of you, scott and simone today.
My thoughts are with you, Scott, and little Simone. Best wishes for a quick and All Better Making surgery and a speedy recovery!
Wishing that everything goes well with the surgery. My thoughts are with all of you.
Yes! Make the surgeon remove the spare rib. It’s the least he can do to prove that his hands are, in fact, steady as a board.
I’ll be keeping y’all in my thoughts.
Oh, darlin’ how scary. How incredibly awful.
I am saying every prayer I know (including Grace) that everything runs smooth as silk.
Lots of love to you all.
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