And by Mouse Surgeon I Mean Surgically Trained Rodent.
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.
96 Comments
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.
I’ll be sending up a prayer as soon as I post this…
She is a fighter. I have confidence.
aaah and eeeek!!! will be thinking of you this afternoon. and hopefully it will really for serious be The Thing That Makes Simone All Better.
I am amazed at how well you keep your wit and writing up even in these circumstances. I’ve only been following your story for a short time, but I think you’re a remarkable woman.
Sending thoughts and prayers to you and your family today…
I am praying for your family.
Alexa, it sounds terrifying! I once sat in a waiting room holding my mother-in-law’s hand, while surgeons repaired my husband’s lung. He is a full-grown man, with plenty of room to maneuver in there, but still I was falling apart. Having the life of someone you love being held literally in the hands of someone you don’t even know can’t be anything short of terrifying. Still, surgeons are amazing, and very good at what they do, and most of the time it all turns out wonderfully. I will be praying for you, and Scott, and Simone today, and wishing I could do anything more.
I am praying for you and Scott and Simone and the surgery right now.
Thinking of all of you this morning. I’ll be praying for a quick, smooth, and successful surgery for Simone and a deep peace during the proceedure for you and Scott. And I would hope that ALL NICU surgeons would have to play a perfect round of Operation during their boards, just to make sure…
My godson had his PDA operated on when he was just slightly larger than Simone is now (he was 2# at birth). He came through just fine and the scar is barely noticeable now that he is three years old.
If you want to talk to a mom who has been through this, I’m happy to pass along my friend’s contact information.
Will say the Mi Sheberakh for Simone tonight. Best of luck.
How are you so funny and such a good writer at times like these? You continue to amaze me.
Not to sound casual, as I would totally be freaking out if I were in your shoes, but I have seen programmes where surgeries are done on the tiniest babies and it is amazing what they can do. If it’s on TV, it must be true.
Good luck to you, Scott, and Simone. I will keep you in my thoughts, as always.
I’ll be thinking of Simone today (and you!), and feel certain that a surgeon brave enough to do something like this must be very skilled indeed! I know you must be terrified; think of the great relief you will feel when they let you know that all is well.
Hoping, praying, wishing, sending good vibes; anything/everything I can do that might help. Good luck.
Alexa, for someone going through what you are to have a wit as sharp as yours is utterly amazing. I doubt I would be able to string together coherent sentences.
I’m thinking of you guys and wishing every good thing for a successful surgery and recovery.
I will be thinking of you as I have been this whole time. My strongest hopes and prayers are headed your way.
Can you ask for more percoset? Drugs for mom sound like a very very good idea right now. Seriously.
Alexa - I’m thinking of you, Scott and Simone all the time, and will think extra hard this afternoon. Hopefully you’ll be able to keep us posted about how things go, but I just know she and the surgeon can pull this off without any annoying buzzers going off!
Don’t know if you’re OK with this, but I’m taking the liberty of praying very hard for Simone Lee, you, Scott and the surgeon this afternoon.
Take care,
Julie
Alexa -
I will be thinking of you,Simone, and Scott ALL DAY and praying that everything goes smoothly! And Becky is right - she won’t remember any of this!
My nephew had his PDA done when he was 2 weeks as well (I don’t remember lbs, sorry). He came through w/ flying colors and is now a happy, healthy, bouncy (really, irritatingly bouncy) little 4 year old with a great sense of rhythm. That may not have been a result of the surgery, though. Prayers, hopes and all good wishes coming your way.
I am sending hugs to you and Simone. I know how scary opperations are while they are still so tiny. Remember and say this to yourself–she WILL get through this and she WILL be just fine. This WILL help her tremendously.
Simone is a fighter!
Positive vibes to you and yours.
Alexa - these doctors know what they’re doing. They’ve done it before. Your daughter is in the best of hands.
I’ve been thinking of you and your baby all the time and continue to do so. Prayers, energy, positive thoughts from far.
Man, the hits just keep on coming, huh? I feel for you like nobody’s business. You will definitely be having some PTSD after this is all over but in the meantime, it’s like war. Just run on adrenaline and be there in spirit for your daughter. She will be okay. When I was in NICU there was a surgery almost everday and they all seemed to go fine. There were tons of babies as tiny as yours and let’s just assume that the surgeon isn’t just doing this for a hobby. Let’s hope he knows his shit. I will be thinking about you.
When I had an epidural I quizzed the doctor on the number of times he’d done it, most common complications, etc. He was slightly amused to see/hear this largely pregnant woman “interviewing” him. So, I think a good game of Operation is definitely in order.
I’m thinking positive thoughts for you, Simone and Scott.
Sending lots of good thoughts your way this afternoon. I know any procedure is scary but Simone is in great hands.
Being a medical transcriptionist, I have typed many of those PDA closures. Believe me, the surgeons and team will be excellent and Simone will do very well. They are very careful with these precious little ones. Her blood pressures will become normal, the fluid in her lungs will go away. She will “pink up” nicely. The PDA closes on its own after a couple weeks when a baby is full term, but because there are so many precious premature infants in this world now, the surgeons have to do it.
I have and will continue to pray for this “Flotsam” family.
If you ever want to visit “Neopets.com”, and look around in it, you will find that a Flotsam in Neopet world is another name for a dolphin. Neopets is a children’s website full of games and fun things to do. You can adopt “pets”, which are literal neopets - and they are common animals named funny, childish names. A Kangaroo is called a Blumaroo. A dolphin is called a Flotsam. My grandkids are all involved with Neopets, and that is how I found this website, by putting “Flotsam” into Google. I’m glad I did. :o)
I think a quick game of Operation is only fair in order to judge and assess skillset. Please know I will be praying for you and Simone today.
Thinking about you often. Very fervent good wishes for Simone today.
I am sending a hug, good thoughts, and much peace. Thinking of Simone today.
thinking of you sweetie. I’m sure that surgeon is quite the skilful person (man/woman?) It must be terrifying, though. Hang in there.
Thoughts for you and Simone coming your way!
Hi, you do not know me. In fact, I’m not even sure how I came upon your blog. I am the mother of a micropreemie, born at 26 weeks, weighing 1 pound 5 ounces. I don’t know if you have been given this information or not, but I belong to an internet group - http://groups.yahoo.com/group/PreemieBlogMoms/ - which really helped me throughout my NICU stay and beyond. My son spent 225 days (don’t freak out, extreme case) in the NICU and has been home for 7 months. If you are interested, please join this group. There you will find a bunch of great mommies who have been through what you are going through and can answer any questions you might have. Several members are nurses.
I will keep you and Simone in my prayers.
peace to you today
Damn wishbone always tripped me up, too. I’ll be awaiting word on the other side. I can imagine the fear of sitting there waiting is inexplicable. Babies are strong little things, they really are. Wishing her the speediest of recoveries, and all of you peace. (Will repeat my “Steady Hands” mantra this afternoon.)
I’ve got everything crossed for you!
Perhaps a blindfolded game of Operation for the surgeon. Then maybe, just MAYBE he/she could be allowed to even consider the honor to work on Princess Simone.
Holding my breath until the next post, and as always, my thoughts and prayers are for you and your family.
I think your request is entirely reasonable. I hope they had the sense to comply. Hoping you are all okay.
Sending our love and thoughts. Hoping all is well and surgery was successful.
Praying for all of you!
It sounds terrifying but also like she is in the best possible hands. Simone has my best wishes for a successful surgery and speedy recovery.
Our son Edison had PDA surgery too, though he was a bit bigger than Simone. I can tell you that the guy who did the surgery at Children’s in S Mpls was mid 30’s, and a pediatric cardiac surgeon. These guys do stuff like re-arrange heart ventricles when there aren’t the usual number of chambers, so I think a PDA surgery is about as tough as making a pot of coffee for these cats.
I asked, and our guy (smug as all hell, with decidedly cold bedside manner), said he did something like 3 00 or 400 PDA surgeries the year before we had ours done.
Our kid is now 3, and thriving.
Good luck!
I’m thinking of your family and sending good wishes for Simone.
As to the surgeon’s dexterity, my husband is a pediatric cardiologist, and although he’s not a surgeon, he does perform invasive procedures (threads catheters into babies’ hearts to perform ablations to correct arrhythmias). He has the best eye-hand coordination and fine-motor skills of anyone I know–I think the people who reach that level of medical practice must have innate skill to be successful (that is, to even advance through medical training to become that sort of physician). That doesn’t make it any less scary for the mothers and fathers who have to endure it on behalf of their children. But hopefully it’s vaguely reassuring. Best wishes to the whole Flotsam tribe.
Thinking of you and your baby. Wishing Simone a healthy recovery for this important surgery.
Dear Simone,
I’m wishing you a swift recovery, honey, and easier breathing: just grow, grow, grow! My thoughts are with you, sweet baby, and with your Mom and Dad. I look forward to an update to see how you and your parents are doing post-op.
Lots of love,
Mara
Please know I am thinking of you, Scott and Simone and sending all my good thoughts your way! Anxiously waiting to hear how all of you are.
Thinking of you and hoping so hard that everything goes beautifully.
Came to you by way of Julie. Baby is quite small but very beautiful and mighty. Good things come in small packages!
I found your blog via Preemie Blog Moms. Just wanted to let you know I was thinking of you and your family. I too had twins at 25 weeks, we lost Logan after 5 months. His twin Cooper is now 2 years old. I can promise you that although the NICU seems like an overwhelming place, one day it will seem like a distant memory. Keeping your beautiful little Simone in my prayers!
Hello I came across your blog via A Little Pregnant. I will keep you and your family in my thoughts. If it’s any comfort, I had my PDA fixed 24 years ago and though one bosom is higher than the other as a result, I am otherwise completely well. I wish the same for little Simone (besides the boobs part, but from what I understand, the surgery has come a long way) :) Best wishes to you and take care.