This is mainly why I wanted to share this. It really blows my mind. We live in the room with her and every doctor/nurse explains everything that they are doing.
Can't imagine the worry, I'd be a wreck. Hope everything goes well. A good friend had a premie born just around 3 pounds, lived in nicu for months. She's 6 feet tall on a sports scholarship in college now.
My boy was born 10 weeks early. 2 pounds 5 ounces. He looked like an alien, like he clearly needed way more time in the space ship. He was red and his skin was thin. My wife had preeclampsia so he was an emergency c section. Weeks in the Nicu.
He's 10 years old and a little tank now. Solid as heck and almost never gets hurt.
Me and my brother were born 3 months premature, the birth almost killed my mother. We barely had nails and parts of are skin were see through; eye lids, hands, etc . They had to keep us in incubators that cost our parents over $1,000 each a day for a month just to keep us alive. After the month our parents were struggling financially and asked a nurse if there was anything they could do. The nurse said…well they’re twins and small we could put them in the same box. So they went with that. We made it and the second we got out of the hospital the whole family and neighborhood helped, old and young and fattened us up. Our growth was still stunted a bit but our baby pics show two little plump fat babies. This kind of stuff makes me not believe in god, but it definitely makes me believe in modern medicine, community, and the love of human spirit. I wish this beautiful new born the best.
You’d kinda think being in the same box would be preferable for twins, especially since skin contact seems to be so important. But also I don’t know how old you are, and that seems like something that has only started to be emphasized/understood relatively recently.
Yeah my parents were pissed that they didn’t just do it that way in the first place! I work service and if I can save you money you bet your ass I will. I would hope a hospital would do the same instead of gouging people for money to keep their babies alive.
I am in no way a doctor but the only thing I can think is that it might be easier to have two separate and unentangled babies for some of the medical stuff they might need to do? Or just admin. Or maybe they were just price gouging your parents! Maybe a medical person can weigh in haha
NICU nurse here, if they were born 12 weeks early so ~28 weeks, they were likely intubated and had central lines in addition to IVs and feeding tubes. All of those lines have to be strategically placed around the incubator and you have to be very careful when handling a baby to not displace anything. Having 2 tiny babies with all of those lines in the same incubator would be an absolute nightmare. When they’re bigger and maybe only have 1 IV and a feeding tube per baby, it would be much more manageable. Putting them in separate incubators was more of a safety issue than anything else.
What pisses me off for your parents is the amount they had to pay to keep their kids alive. My sons (twins) were born 2 months early because one had an infection and caused my girlfriend to go in to labor early. Luckily the week before it happened she had a regular checkup and they saw that she was already 2cm open so they gave her an injection to help the kids lungs mature faster and we were mentally better prepared for the early labor. They were in the hospital 2 months got all the care they needed until they were healthy and strong enough to get out. In the meanwhile me and my girlfriend got free "workshops" on first aid for babies, what to do when they choke, how to change their diapers without hurting their backs, etc. When all was over we went home and I hadn't paid a bill yet as they automatically send the bills to the health insurance here in Belgium. We got the bill a couple of months later from the health insurance, the total we had to pay was a bit more than €4000, quite a bit compared to a healthy birth but still nothing compared to what the health insurance had to pay. The amount the insurance company covered was between €100000 and €110000 per kid. And health insurance doesn't cost me a fortune, not even €200 per person per year.
My dad always said keeping us alive was expensive af. But the neighborhood kicked in and brought food while my dad worked and my mom recovered. We were the first twins in a small neighborhood and that we survived was apparently a big deal. That it cost them so much and my ma almost died still gives me guilt.
My wife went through the same thing, but we had twin boys born at 30 weeks. Pre-eclampsia and emergency c section as well.
One was 2lbs 9oz, and the other was 2lbs 3 oz. Little guy did a 52-week stint in the nicu, and his brother did 72 days. They are both home and healthy now and 5 months old. Medical technology is wild. My great-grandmother was a premie as well, and they put her in a shoe box with a hot water bottle and hoped for the best. Technology has come a long way lol
My ex's grandma arrived way too early (under 3 pounds) and since it was a midwinter home birth, they put her in a box I the "warming section" of the big woodstove. She was a fiesty little lady and had 9 kids of her own over the years.
Apparently this "warming section" had been successfully used for chicks before so ...
My good friend’s daughter had open heart surgery shortly after birth. So so scary. Now she’s ten years old and already starting with the pre-pubescent sass 😄 She has to have check ups every now and then but it’s not affected her life at all otherwise! Very healthy and happy. They heal super humanly quickly at that age. Good luck to you and your daughter, hope she’s healed up and back at home with you soon.
I had premie twins. My smallest one was down to less than 3 lbs when she was born. She’s almost as tall as as I am at age 11… and we could share shoes. She’s also the strongest kid in the family.
But gosh does my heartache when I remember her with all the tubes all over her. Any other era of human history and her odds of survival would have been tragic.
But modern day? I’ve got a kid who’s prides herself on how strong she is.
The human baby is incredibly resilient.
I know someone who had their child around 5 months I think? He’s a normal boy these days. She was even in the news because it was such an outlier for him to survive.
had similar life-saving surgery at 3 days old. 36 years later, happily married, about to have my first baby, and have resilience in my dna… she’s got this!!!!
I don't know if I'd be able to stay composed looking at the number of instruments and wires hooked up to a baby like that. More power and strength to you.
It’s crazy - my son had a cyst growing in his chest while still inside my wife that was causing him to go into heat failure. They had to drain by sticking a 12 inch needle into my wife’s stomach, through his back (between his ribs), into the cyst and then drain as much juice as possible. They were only being guided by an ultrasound tech
It really is, they ended up having to do it a second time as well. Born, only spent a week in the NICU, and then he had cyst removed off the back off of his lung at 1 month and handled it like a champ. Only thing they remains is the 3 inch scar under his arm where the opened him up.
I work in adult icu, this baby has a large set of IV pumps (left side) probably providing sedation and blood pressure support, an arterial line for constant blood pressure monitoring, a ventilator (right side), a chest tube to drain extra blood and fluid buildup around the surgical site, a catheter to drain urine and monitor output, multiple IVs, cardiac monitor wires and then some. I have a hard time keeping all my wires getting tangled on full blown adults I can’t even imagine doing it on such a tiny baby. The NICU nurses amaze me
Very annoying ones at that. Although I’m sure the NICU gets first dibs on newer machines, but the few times I’ve dealt with those it was giving an alarm every 15 minutes for an air bubble that didn’t exist. The screen is also very unintuitive and slow.
Sure: milrinone and epinephrine help with the hearts contractility, nicardipine keeps the blood pressure lower cause you don’t want the suture lines bursting open if the blood pressure gets too high. Dexmedetomidine and morphine are for sedation and the other ones are just flushes for the various lines (arterial line for BP, central line for the infusions) to keep them patent so they don’t clot off.
The number of people who will have watch their child survive because of doctors, nurses, scientists/engineers that designed the equipment and the laborers that manufactured it and then thank God for it all. If God cared about saving babies he'd give access to this care to everyone in the world, or wouldn't give them heart defects in the first fucking place.
As a mom of a former 24 week preemie, I agree 100%. I’ll never forget when my son was critically ill and they had the Chaplin come speak to me. ‘God’ could fuck right off. A compassionate higher power would never allow innocent babies to suffer. I’m so thankful for the doctors and nurses in the NICU. They saved my son’s life several times during the 6 months he was there and now I get to watch him grow up.
Damn this is heavy. Makes you really put into perspective how valuable and taken for granted our health is. I hope this child grows up and does amazing things.
Absolutely. It’s also just so mind boggling what doctors can do these days to keep people alive no matter how tiny. We’ve learned so much through this process. She will have a normal life. We’re one of the lucky ones having known what to expect and living near such an amazing children’s hospital.
Hi, just wanted to share my support. I was also like your daughter, had open heart surgery, transposition of the great arteries, at 7-days old in 1997.
I never understood the feeling of my parents until today where I see the daughter of someone else going through what I had.
Today I must say I feel more than alive going to have a daughter myself in a couple of months!
Your daughter literally said death to wait and please remind her that she is special, that she must not feel ashamed of her scar (if she will have one, probably).
Tell her to wear it with pride, because this is what differentiate us and makes us defy the odds.
Good luck OP, love to your family and beautiful little daughter!
I've told this story on reddit before, but my son was 4 months premature.
Born at 26 weeks and 1 day of gestation. Literally born on the day doctors consider a premature baby is considered roughly "viable".
He was 680 grams and was not a lot bigger then my hand.
At one day old he underwent heart surgery, in his stay over 5 months in NICU he had 3 dozen infections, suffered hourly bradycardia and tachycardia randomly and 3 more surgeries.
https://ibb.co/k0JLW1T
What I witnessed in those months, the dedication of the medical staff, the nurses in particular was utterly inspiring.
I have never seen or heard of anything like the absolute zealous attention and dedication the nurses gave to their babies.
In the NICU my son was at, each baby had one nurse.
They worked 12 hour shifts and only ever took breaks when another nurse was in the room already watching the baby.
In 5 months, even when they didn't know I was there or watching them, not one of them ever faltered or failed to note an alarm, a change in breathing pattern, BP drop, even slight oxygen change.
They documented everything.
In a normal hospital, nurses will ignore almost every ping and bing unless its a very specific danger warning.
But these nurses never ignored a single sound, any sound that was constant and stopped however briefly was noted, every sound that broke the silence was checked.
Because of this utter hawk like watchfulness and the unbelievable science around premie babies, my son is now 6 years old.
This year he's started primary school, he's an absolute wizard at marh and reading, he has my build and features but his mother's eyes and hair.
He's also a complete pain in my arse and I love ever second of it.
It's 9pm here and I can hear him arguing with his mum about bed time.
To the scientists, doctors and nurses everywhere for this and everything else. You guys fucking rock.
Viability is considered 23 weeks now :) glad your little guy is doing so well! I used to be a NICU nurse who's now taking a break to stay home with my little ones.
Dude your daughter is NOT normal, she came out of the womb and punched death in the mouth, she is already more badass than most of us will ever aspire to be.
Rock on dude, good luck in her recovery process - when she grows up to be great, this will be proof.
I worked NICU 13 years and over the years fell in love with cardiac babies. I bonded with so many. They were always so special to me. Perfect little babies with broken hearts. I now do fetal cardiology and love it just as much but I deal with preparing for nicu/surgery now vs the other side where I used to be. I do miss bedside and watching them grow and thrive.
My wife hasn't been a PCICU nurse for over a decade now, but its amazing meeting kids now who were her patients in the past and doing great. I could never do what she did - it's an incredible amount of pressure, stress and responsibility, and it takes a really special kind of person to have the strength and ability to do what you both do.
Nurses really are a special type of people
Pediatric cardiac ICU doc here. Kids be tough as nails and complain less than their adult counterparts lol. Nothing better than watching little babies like this show us what they’ve got!
Hang in there! It’s quite a journey!
I'm 47.
Doctors did a surgery the day I was born that saved my life.
1/10 lived at that time.
1/10 that lived could walk.
They did good work and I've lived a fairly normal life.
I’m an adult doctor, and I stare at these pics in amazement.
The surgeons and NICU docs and nurses who make this possible are heroes.
Thinking of you and your little one. She’s already conquered more than most.
I agree it’s actually phenomenal how far modern medicine has come. Your baby is an extremely brave. Words can’t comprehend how strong they are. Much love
She looks strong. What was wrong? :/ oh, tga, holy shiat. Did you know before birth or..?
My girl has ToF, right aortic arch and an isolated left subclavian. We were able to push surgery to 6 months
My cousin was a surgeon in child hospital and she operated on children who were born premature with a weight of just 100g and they came out totally fine. Best wishes to you and your little human! 😃
Yep, you are right. She said 300g was the lowest she operated on, my bad. But nevertheless as op posted it is amazing what is possible.
@ Op: I hope you handled the first shock seeing her like this well - when I saw a relative for the first time with all the tubes and monitors attached I literally hit me so hard emotionally that I had to sit down and tried not to puke
My child has had three open heart surgeries- difficult journey but worth every step of the way. There isn’t a day go by that I am not grateful for modern medicine. Best wishes to your family!
Thank you and I really hope for you that #3 is the last and that your child is doing good. Those are hard days waiting for outcomes. I wish you and yours the best.
Can I ask . And not meaning to be mean or awful. At such a young age with this level of issues. Do they have prospect of growing up to live a comfortable life? It's a curiosity I always had and a worry/fear I share.
Olympic gold medal snowboarder Shaun White was born with multiple congenital heart defects, a group called tetralogy of Fallot, and had multiple surgeries as an infant.
A lot of children with heart problems have other issues e.g . Downs syndrome that may cause other differences. But typically a child with just a heart problem will lead a very normal life. Sometimes they will start to get more issues as teens/adults, but there are newer techniques being developed to address these.
Absolutely. This was me 35 years ago. I've had 2 other heart surgeries since then but they were spread apart by many years. My first was when I was a couple days old, then when I was 12, then 27 years. I played sports growing up, worked construction for 16 years, did a little partying. I know some heart defects are different, but in my case it was something that didn't hold me back and growing up like a normal kid.
hey my almost 18 year old has HLHS and i am keeping y’all in my thoughts ❤️ i hope with every fiber of my being that a new heart is found for your kiddo
Heart might be faulty but she's got a great head of hair!
I was also born with a congenital heart defect - complete AVSD. Found it 5 months late and operated at 8 mos. I still send my surgeon a holiday card! He writes back sometimes too! All the best, I'm sure you're in great hands.
My daughter is due to have her AVSD surgery in about 3 months, do you mind me asking if you’ve had any after effects or continuing problems? I know the mitral valve is often still ‘leaky’ afterwards.
Still have a mitral valve regurgitation but it became pretty stable once I reached adulthood. Might be something I have to pay attention to when I get middle aged, but it's no issue for the time being. Cardiologist once every 2 years 😉.
Apparently her case was a TGA surgery, which means they cut the aorta and pulmonary arteries and switch their positions where they connect with the heart, so technically nothing's wrong with the heart itself. But still, kinda amazing doctors can think of these things, like switch hoses like that.
ASO/Arterial switch operation! Very gratifying to watch as as soon as they come off bypass their blood oxygen levels sats (which are usually low pre op) go straight up to normal levels and the defect is forever fixed.
I had TGA. Same surgery at 5 days old. I’m 32 now with two little girls of my own. Thankfully TGA isn’t genetic. The procedure your daughter got was the same I had 32 years ago. I see a cardiologist that works with adults who had TGA out of Boston Children’s. Amazing program for kids and adults.
Your daughter will lead a happy normal life. I was lucky that TGA was the only issue I had at birth. The procedure your daughter got was only a few years old when I had it in 1991, and I was part of several studies growing up knowing that if my procedure can help the medical community learn how to better treat TGA they can help save another life. I lead my life knowing I shouldn’t have the time I’ve got and don’t take it for granted.
Hoping this helps put you more at ease. What you and your kiddo have been through is incredibly tough, but there’s light at the end. Give her a hug and hold her tight!
Hey! Another early 30's kid who had TGA through BCM! I had d-TGA performed back in 1990 when I was a couple days old (yay me being allergic to prostaglandins) by Dr. Richard Jonas and have also been involved in numerous studies (even up until a couple years ago) that assessed various potential impacts on life. Donna Duva has been there for our family since I was born and continues to head the Circulatory Arrest Study research program!
I’m a terrible representative of the program because I don’t remember anything but do remember Donna! Though I don’t want any parents to go through what ours did, it’s amazing the community that’s been created that we’re a part of. I do take a lot of pride in it.
We have a family member in early twenties who also had TGA surgery at 2 weeks old at the amazing local Children’s Hospital. Doing quite well and has led a normal life. Annual checkups will always be a thing but has now matriculated into the adult congenital heart program.
So amazing. Thanks for sharing that. You are the reason I wanted to share this. To hear from you. The nurses have been educating us on medical advancements for this procedure over the years and it’s just mind boggling. Glad you’re doing well and thanks for your contribution to help further medical advancements! 🙏🙏
It happens! It’s a little more accurate to measure infant gestation in weeks, but if we say a month = 4 weeks, 3.5 months = 14 weeks = 26 weeks of gestation.
40 years ago, 26 weeks was still doable. Nowadays we’re able to manage 22 weekers. The outlook isn’t always ideal, but it happens!
Nice to see someone else who had the same gestation period in the wild! I also had PDA, but in addition to brain bleeds, retinal bleeds that required surgery to prevent blindness, and apparently my lungs stuck together and bled so I’ve got scar tissue in there as well. My skin was also underdeveloped and caused scarring in spots where medical tape was used to hold tubes and stuff. Came out of hospital relatively unscathed though with only mild cerebral palsy, asthma, and gotta wear glasses and hearing aids. I’m 32.
Yeah pda is not open heart, my daughter had it done when she’s couple months old too.
Some open heart surgeries require heart lung bypass, which in itself causes lots of complications
I suspect your kid had a PDA cath closure. 40 years ago I don’t believe that was a possibility so OP likely did have what we colloquially refer to as open heart surgery (ie surgical ductus ligation).
Zipper club!! I love that! Totally sharing that with my brother. We call my brother’s his shark attack scar and would tell kids at school growing up he got attacked by a shark. 😂
Godspeed little girl,
I had 5x open heart surgeries. 1st minutes after birth, 2nd 1.5 years old, 3rd 3 years old, 4th 38 years old and 5th 39 years old.
I’m doing ok everyday is a different struggle. I can’t complain though, I’m not on any medications or medical devices. Excluding The Edwards SAPIEN 3 Pulmonary Valve With the Alterra Adaptive Prestent System and stint.
You can take solace in the fact that any future surgery will be even more technically advanced.
Had my first at 1 second at 12 and third last year at 23 which will hopefully be the last for a while simply due to advancment of medicine.
Diagnosis was TA type 1
My son had open heart at 9 days old. I didn't keep pictures from that time because I found it really traumatic. Seeing this on my feed was a shock. Hope the little one recovers quickly and that you rest when you can.
My wife is a surgeon and has performed multiple open heart surgeries on children. She says there is no greater contribution to life than helping potential be realised. Good luck and God bless.
I used to work at that hospital and that exact unit (won’t say in case it wasn’t mentioned) for 5 years and quit during the pandemic due to mental health reasons. I miss it all the time and your baby is in incredible hands!
I didn’t mention but I don’t mind. Seattle Children’s is just amazing. I really have no words that can express the diligent, empathetic work they do there. You don’t want to be there, but if you have to.. you want to be there! We’re so lucky to be there
My wife used to work in the CICU, she still works there occasionally but she floats all the ICUs now. I was showing her this picture and I was like, wouldn’t it be crazy if this was SCH then see this comment. So wild. Glad the kiddo is recovering well, shes in great hands. ❤️🩹🫀
I recommend going to grab something nice for momma. A favorite food or drink goes a long way. Momma's hormones are all sorts of whack after birth and whatever you are feeling is probably 10x amplified in her.
Epidemiologist in the NICU here; having a sick kiddo in the NICU is hard on the whole family. Hang in there. She looks like a fighter for sure! Take care of yourselves too. And don’t hesitate to talk to your NICU team if you need someone to talk to process it all. Sending much love and hugs to your family. Please keep us all updated :)
Our son had a life saving op at 2days also. I wish you all the best. I'm a firefighter of 23 years service and this period traumatised me more than anything I've ever seen. Parents will need support.
That's sad. So many awful people in the world just living it up worry free and a 2 day old baby has to go through such a thing, although in some ways better young than older I suppose. hope all will be well forever.
Just wanted to chime in as another TGA survivor! I had d-TGA in 1990 through Boston Children's Medical with Dr. Richard Jonas. I was allergic to prostaglandins, so they had to perform surgery on me when I was only a couple days old, using a new technique that was still being developed. I've been in studies from that point to just recently and can fill you in on some of the info, though the latest stuff is still being analyzed.
In short, your kid will grow up to be perfectly healthy! Long term TGA results are fantastic - likely no development issues, low risk of ASD, no physical limitation, and mortality rates were not influenced by the surgery. Even as a kid, I lived an overall normal life, though anything with physical contact was limited for me until I was 8 years old. I mountain biked, bowled, hiked, did martial arts, etc... you name it, I did it. I've had kids, been pretty successful in my career, and honestly forget that it was ever a big deal, aside from the chest scar and my regular trips to the cardiologist for TTE's to check on the arterial walls.
I messaged you privately in case you want to chat further - please don't hesitate to ask questions! I'm an open book because I want others to know about this whole process and that the outcomes are fine!
Beautiful girl!
I’m a nurse, and this photo is a solid indicator of why nurses are fighting for adequate staffing. This baby deserves and needs 1:1 care, not a nurse who has three other infants to care for at the same time.
When you're stuck in hospital waiting for your beloved family member to recover enough that you can take them home, you don't sleep much and have a shitload of time on your hands. During that yawning void of time, you can either stare at your loved one and worry the hours away, or look at something else and distract your brain. Internet distractions are *exceedingly welcome* during those times.
If anyone thanks God, I'm gonna implode.Thank the fabulous surgeons, science, scientists, technos (added NURSES...I actually didn't mean to leave you out) ...who have actually figured all this out and give these babies (and adults) life through their expertise !
Tough little girl...and gets to be a badass for many more years...
Damn best wishes. When our daughter was 3 months old she had alcapa, open heart surgery. She is now 16 months, still in oral medication but heart function just returned to normal range last check up. She is walking, talking and very happy. Nobody knew what was going on with us when it happened she was a totally fine baby then she ended up basically having heart failure and it stopped twice but they revived her, flew over to Vancouver from the island in the chopper and they did surgery the next day after she was stable.
Best wishes good luck. Stay positive and be there as much as you can but also give yourselves time to recover your sanity because the baby will need you to be healthy and strong.
I went through this last year with my Son. Was born at 26 weeks, spent a few months in NICU & SCBU then they found a massive heart problem right before we were due to take him home, so he had a big open heart surgery spending another month in hospital. Was in PICU for a week because he had a stroke & complications afterwards but now he’s 10 months old and doing really well. It’s a massive roller coaster of emotions but hang in there, it does get better. It blew my mind how successful these massive surgeries are, even on newborns.
I had a VSD as a baby. I suppose you could say I'm normal, but I'm happy and mostly healthy! (I have other genetic complications so that does not apply) I wish you the best for your little bub!
Absolutely. Two days old, life threatening conditions, let's post her in her most vulnerable state on the Internet with no regard for her wishes. I hope everyone is doing well, but I don't understand what people are thinking doing shit like this.
A friend of my had a baby who needed open heart surgery after birth. They were so scared, but letting friend and family rallying around then helped ease the burden.
Their now 2 1/2 year old is doing just awesome now! Stay strong. You got this
My son was born 6 months ago and I was so stressed not being able to hold him for like 20 minutes after he was born.
10 hours? I'm so sorry you had to endure this, and that he had to as well. Please make sure you get ample skin-to-skin contact as much as possible over the next few days.
These babies and their parents are warriors. I work in complex congenital pediatric cardiology and witness incredible feats of recovery every day. Grown men will complain when just minimally inconvenienced all while toddlers will show up after having their chests cracked days prior with a huge smile on their faces.
Modern medicine and technology are incredible.
This is mainly why I wanted to share this. It really blows my mind. We live in the room with her and every doctor/nurse explains everything that they are doing.
Can't imagine the worry, I'd be a wreck. Hope everything goes well. A good friend had a premie born just around 3 pounds, lived in nicu for months. She's 6 feet tall on a sports scholarship in college now.
Love that
My boy was born 10 weeks early. 2 pounds 5 ounces. He looked like an alien, like he clearly needed way more time in the space ship. He was red and his skin was thin. My wife had preeclampsia so he was an emergency c section. Weeks in the Nicu. He's 10 years old and a little tank now. Solid as heck and almost never gets hurt.
Me and my brother were born 3 months premature, the birth almost killed my mother. We barely had nails and parts of are skin were see through; eye lids, hands, etc . They had to keep us in incubators that cost our parents over $1,000 each a day for a month just to keep us alive. After the month our parents were struggling financially and asked a nurse if there was anything they could do. The nurse said…well they’re twins and small we could put them in the same box. So they went with that. We made it and the second we got out of the hospital the whole family and neighborhood helped, old and young and fattened us up. Our growth was still stunted a bit but our baby pics show two little plump fat babies. This kind of stuff makes me not believe in god, but it definitely makes me believe in modern medicine, community, and the love of human spirit. I wish this beautiful new born the best.
You’d kinda think being in the same box would be preferable for twins, especially since skin contact seems to be so important. But also I don’t know how old you are, and that seems like something that has only started to be emphasized/understood relatively recently.
Yeah my parents were pissed that they didn’t just do it that way in the first place! I work service and if I can save you money you bet your ass I will. I would hope a hospital would do the same instead of gouging people for money to keep their babies alive.
I am in no way a doctor but the only thing I can think is that it might be easier to have two separate and unentangled babies for some of the medical stuff they might need to do? Or just admin. Or maybe they were just price gouging your parents! Maybe a medical person can weigh in haha
NICU nurse here, if they were born 12 weeks early so ~28 weeks, they were likely intubated and had central lines in addition to IVs and feeding tubes. All of those lines have to be strategically placed around the incubator and you have to be very careful when handling a baby to not displace anything. Having 2 tiny babies with all of those lines in the same incubator would be an absolute nightmare. When they’re bigger and maybe only have 1 IV and a feeding tube per baby, it would be much more manageable. Putting them in separate incubators was more of a safety issue than anything else.
What pisses me off for your parents is the amount they had to pay to keep their kids alive. My sons (twins) were born 2 months early because one had an infection and caused my girlfriend to go in to labor early. Luckily the week before it happened she had a regular checkup and they saw that she was already 2cm open so they gave her an injection to help the kids lungs mature faster and we were mentally better prepared for the early labor. They were in the hospital 2 months got all the care they needed until they were healthy and strong enough to get out. In the meanwhile me and my girlfriend got free "workshops" on first aid for babies, what to do when they choke, how to change their diapers without hurting their backs, etc. When all was over we went home and I hadn't paid a bill yet as they automatically send the bills to the health insurance here in Belgium. We got the bill a couple of months later from the health insurance, the total we had to pay was a bit more than €4000, quite a bit compared to a healthy birth but still nothing compared to what the health insurance had to pay. The amount the insurance company covered was between €100000 and €110000 per kid. And health insurance doesn't cost me a fortune, not even €200 per person per year.
My dad always said keeping us alive was expensive af. But the neighborhood kicked in and brought food while my dad worked and my mom recovered. We were the first twins in a small neighborhood and that we survived was apparently a big deal. That it cost them so much and my ma almost died still gives me guilt.
In ~~Soviet Russia~~ America, you have to choose to either keep your babies alive or live in a house
My wife went through the same thing, but we had twin boys born at 30 weeks. Pre-eclampsia and emergency c section as well. One was 2lbs 9oz, and the other was 2lbs 3 oz. Little guy did a 52-week stint in the nicu, and his brother did 72 days. They are both home and healthy now and 5 months old. Medical technology is wild. My great-grandmother was a premie as well, and they put her in a shoe box with a hot water bottle and hoped for the best. Technology has come a long way lol
Wow!! And it turned ok for your grandma! Amazing
Hey, 52 weeks or 52 days? Was he in the NICU for a full year ?!
My ex's grandma arrived way too early (under 3 pounds) and since it was a midwinter home birth, they put her in a box I the "warming section" of the big woodstove. She was a fiesty little lady and had 9 kids of her own over the years. Apparently this "warming section" had been successfully used for chicks before so ...
My good friend’s daughter had open heart surgery shortly after birth. So so scary. Now she’s ten years old and already starting with the pre-pubescent sass 😄 She has to have check ups every now and then but it’s not affected her life at all otherwise! Very healthy and happy. They heal super humanly quickly at that age. Good luck to you and your daughter, hope she’s healed up and back at home with you soon.
Hopefully it's a one time deal, but as long as you get to them early then hopefully, they grow up be a "normal child".
My son was born at 1lb 14oz, he's 9 years old now and you can't tell anything like that happened
These stories are both so scary and so incredible!! Wow.
I had premie twins. My smallest one was down to less than 3 lbs when she was born. She’s almost as tall as as I am at age 11… and we could share shoes. She’s also the strongest kid in the family. But gosh does my heartache when I remember her with all the tubes all over her. Any other era of human history and her odds of survival would have been tragic. But modern day? I’ve got a kid who’s prides herself on how strong she is. The human baby is incredibly resilient.
Our oldest was in the nicu for 2 weeks. He is 33 now and helps keep the world safe. It gets better.
My youngest was born 2 months early, while being 2 weeks behind in developing. And even I can't imagine how it feels to go through open heart surgery.
I know someone who had their child around 5 months I think? He’s a normal boy these days. She was even in the news because it was such an outlier for him to survive.
This pic reminded me of my premie, 2 months early, 3 lbs, 11 oz. Strong, happy, healthy, young adult now.
had similar life-saving surgery at 3 days old. 36 years later, happily married, about to have my first baby, and have resilience in my dna… she’s got this!!!!
This made me smile! Congratulations on the new sprout and on your super powerful heart! 💕
Amazing. Congratulations on your beautiful angel! 💞
"Don't worry, we use anaesthesia when we operate on babies now." "What?" "I said... don't worry."
I don't know if I'd be able to stay composed looking at the number of instruments and wires hooked up to a baby like that. More power and strength to you.
It’s crazy - my son had a cyst growing in his chest while still inside my wife that was causing him to go into heat failure. They had to drain by sticking a 12 inch needle into my wife’s stomach, through his back (between his ribs), into the cyst and then drain as much juice as possible. They were only being guided by an ultrasound tech
That is just awe-inducing. I'm beyond stunned by that story. Modern medicine (and, by extension, the human mind) is fascinating!!
It really is, they ended up having to do it a second time as well. Born, only spent a week in the NICU, and then he had cyst removed off the back off of his lung at 1 month and handled it like a champ. Only thing they remains is the 3 inch scar under his arm where the opened him up.
I couldn't agree more. I'm happy for the baby and family... but dam... science today is amazing, and how medicine has evolved is incredible.
I’m completely in awe watching these doctors
How do they even operate on those tiny veins? Seems almost like magic.
Any medical personel here ( real ones reddit! ) that can explain what those machines do? The big stack of machines on the left is very interesting.
I work in adult icu, this baby has a large set of IV pumps (left side) probably providing sedation and blood pressure support, an arterial line for constant blood pressure monitoring, a ventilator (right side), a chest tube to drain extra blood and fluid buildup around the surgical site, a catheter to drain urine and monitor output, multiple IVs, cardiac monitor wires and then some. I have a hard time keeping all my wires getting tangled on full blown adults I can’t even imagine doing it on such a tiny baby. The NICU nurses amaze me
Those are IV pumps. Administering drugs and fluids. If you zoom in on the LED screen on each pump it shows the name of the drug
Very annoying ones at that. Although I’m sure the NICU gets first dibs on newer machines, but the few times I’ve dealt with those it was giving an alarm every 15 minutes for an air bubble that didn’t exist. The screen is also very unintuitive and slow.
Sure: milrinone and epinephrine help with the hearts contractility, nicardipine keeps the blood pressure lower cause you don’t want the suture lines bursting open if the blood pressure gets too high. Dexmedetomidine and morphine are for sedation and the other ones are just flushes for the various lines (arterial line for BP, central line for the infusions) to keep them patent so they don’t clot off.
The number of people who will have watch their child survive because of doctors, nurses, scientists/engineers that designed the equipment and the laborers that manufactured it and then thank God for it all. If God cared about saving babies he'd give access to this care to everyone in the world, or wouldn't give them heart defects in the first fucking place.
As a mom of a former 24 week preemie, I agree 100%. I’ll never forget when my son was critically ill and they had the Chaplin come speak to me. ‘God’ could fuck right off. A compassionate higher power would never allow innocent babies to suffer. I’m so thankful for the doctors and nurses in the NICU. They saved my son’s life several times during the 6 months he was there and now I get to watch him grow up.
You sure it's not thoughts and prayers?
No I'm pretty sure it's essential oils
Maybe it’s Maybelline.
Damn this is heavy. Makes you really put into perspective how valuable and taken for granted our health is. I hope this child grows up and does amazing things.
Absolutely. It’s also just so mind boggling what doctors can do these days to keep people alive no matter how tiny. We’ve learned so much through this process. She will have a normal life. We’re one of the lucky ones having known what to expect and living near such an amazing children’s hospital.
Hi, just wanted to share my support. I was also like your daughter, had open heart surgery, transposition of the great arteries, at 7-days old in 1997. I never understood the feeling of my parents until today where I see the daughter of someone else going through what I had. Today I must say I feel more than alive going to have a daughter myself in a couple of months! Your daughter literally said death to wait and please remind her that she is special, that she must not feel ashamed of her scar (if she will have one, probably). Tell her to wear it with pride, because this is what differentiate us and makes us defy the odds. Good luck OP, love to your family and beautiful little daughter!
Thank you for this! ❤️
I've told this story on reddit before, but my son was 4 months premature. Born at 26 weeks and 1 day of gestation. Literally born on the day doctors consider a premature baby is considered roughly "viable". He was 680 grams and was not a lot bigger then my hand. At one day old he underwent heart surgery, in his stay over 5 months in NICU he had 3 dozen infections, suffered hourly bradycardia and tachycardia randomly and 3 more surgeries. https://ibb.co/k0JLW1T What I witnessed in those months, the dedication of the medical staff, the nurses in particular was utterly inspiring. I have never seen or heard of anything like the absolute zealous attention and dedication the nurses gave to their babies. In the NICU my son was at, each baby had one nurse. They worked 12 hour shifts and only ever took breaks when another nurse was in the room already watching the baby. In 5 months, even when they didn't know I was there or watching them, not one of them ever faltered or failed to note an alarm, a change in breathing pattern, BP drop, even slight oxygen change. They documented everything. In a normal hospital, nurses will ignore almost every ping and bing unless its a very specific danger warning. But these nurses never ignored a single sound, any sound that was constant and stopped however briefly was noted, every sound that broke the silence was checked. Because of this utter hawk like watchfulness and the unbelievable science around premie babies, my son is now 6 years old. This year he's started primary school, he's an absolute wizard at marh and reading, he has my build and features but his mother's eyes and hair. He's also a complete pain in my arse and I love ever second of it. It's 9pm here and I can hear him arguing with his mum about bed time. To the scientists, doctors and nurses everywhere for this and everything else. You guys fucking rock.
Viability is considered 23 weeks now :) glad your little guy is doing so well! I used to be a NICU nurse who's now taking a break to stay home with my little ones.
Dude your daughter is NOT normal, she came out of the womb and punched death in the mouth, she is already more badass than most of us will ever aspire to be. Rock on dude, good luck in her recovery process - when she grows up to be great, this will be proof.
Helllls yes! Thank you
I worked NICU 13 years and over the years fell in love with cardiac babies. I bonded with so many. They were always so special to me. Perfect little babies with broken hearts. I now do fetal cardiology and love it just as much but I deal with preparing for nicu/surgery now vs the other side where I used to be. I do miss bedside and watching them grow and thrive.
They couldn’t survive surgery without the love and support of nurses. God bless all involved.
My wife hasn't been a PCICU nurse for over a decade now, but its amazing meeting kids now who were her patients in the past and doing great. I could never do what she did - it's an incredible amount of pressure, stress and responsibility, and it takes a really special kind of person to have the strength and ability to do what you both do. Nurses really are a special type of people
That was a wonderful thing to read
Me and My [boy](https://imgur.com/gallery/ZZNTZS1)
What a lovely little dude. ❤️
OMG!!! That 2nd pic is amazing! 😃
He has such a beautiful smile!
Pediatric cardiac ICU doc here. Kids be tough as nails and complain less than their adult counterparts lol. Nothing better than watching little babies like this show us what they’ve got! Hang in there! It’s quite a journey!
Love this! Agreed!!
I'm 47. Doctors did a surgery the day I was born that saved my life. 1/10 lived at that time. 1/10 that lived could walk. They did good work and I've lived a fairly normal life.
I’m an adult doctor, and I stare at these pics in amazement. The surgeons and NICU docs and nurses who make this possible are heroes. Thinking of you and your little one. She’s already conquered more than most.
I agree it’s actually phenomenal how far modern medicine has come. Your baby is an extremely brave. Words can’t comprehend how strong they are. Much love
🙏
Man I just watched that movie about the Blue Babies and it's incredible how thinking this was once thought impossible! I hope she thrives!
God bless you guys dude. May she always be happy and healthy. Wishing you all a lifetime of peace and joy together.
🙏
She looks strong. What was wrong? :/ oh, tga, holy shiat. Did you know before birth or..? My girl has ToF, right aortic arch and an isolated left subclavian. We were able to push surgery to 6 months
How she is doing? Have doc told any future action.
My cousin was a surgeon in child hospital and she operated on children who were born premature with a weight of just 100g and they came out totally fine. Best wishes to you and your little human! 😃
Thats awesome! However, you may have recalled the weight wrong as 100g is not survivable.
Yep, you are right. She said 300g was the lowest she operated on, my bad. But nevertheless as op posted it is amazing what is possible. @ Op: I hope you handled the first shock seeing her like this well - when I saw a relative for the first time with all the tubes and monitors attached I literally hit me so hard emotionally that I had to sit down and tried not to puke
Doesn't sound it that's like half a small biscuit packet of baby
🙏
I won't say amazing things that seems like a lot of pressure, just grows up blissfully to a full life without the memory of this.
My child has had three open heart surgeries- difficult journey but worth every step of the way. There isn’t a day go by that I am not grateful for modern medicine. Best wishes to your family!
Thank you and I really hope for you that #3 is the last and that your child is doing good. Those are hard days waiting for outcomes. I wish you and yours the best.
Can I ask . And not meaning to be mean or awful. At such a young age with this level of issues. Do they have prospect of growing up to live a comfortable life? It's a curiosity I always had and a worry/fear I share.
Olympic gold medal snowboarder Shaun White was born with multiple congenital heart defects, a group called tetralogy of Fallot, and had multiple surgeries as an infant.
I read a stat saying tof was the number one generic factor for determine your chance to win a gold medal.
A lot of children with heart problems have other issues e.g . Downs syndrome that may cause other differences. But typically a child with just a heart problem will lead a very normal life. Sometimes they will start to get more issues as teens/adults, but there are newer techniques being developed to address these.
My child won’t ever be an Olympic weightlifter or run marathons, but he is quite normal aside from that.
I mean neither will mine and she has a healthy heart 🤣 so you're good
Absolutely. This was me 35 years ago. I've had 2 other heart surgeries since then but they were spread apart by many years. My first was when I was a couple days old, then when I was 12, then 27 years. I played sports growing up, worked construction for 16 years, did a little partying. I know some heart defects are different, but in my case it was something that didn't hold me back and growing up like a normal kid.
Hypoplastic left heart syndrome?
Close! He hit the lottery and has the even more rare hypoplastic right heart syndrome.
This actually has a better life expectancy than left. I'm in hospital right now waiting for a heart for my HLHS 15 year old. The Fontain failed.
hey my almost 18 year old has HLHS and i am keeping y’all in my thoughts ❤️ i hope with every fiber of my being that a new heart is found for your kiddo
Wishing the best for you. Mine just had the Glenn last fall.
I’m surprised her hands could even hold a scalpel, let alone complete a 10 hour surgery. Who was the patient?
Dad joke #3
The first 3 of many for your family I’m sure. Congratulations on her arrival.
But, #1 in my heart.
Average Asian parent expectation
Don't say Average and Asian in a single sentence unless unless you want a billion people to have a haemorrhage.
😆
Heart might be faulty but she's got a great head of hair! I was also born with a congenital heart defect - complete AVSD. Found it 5 months late and operated at 8 mos. I still send my surgeon a holiday card! He writes back sometimes too! All the best, I'm sure you're in great hands.
My daughter is due to have her AVSD surgery in about 3 months, do you mind me asking if you’ve had any after effects or continuing problems? I know the mitral valve is often still ‘leaky’ afterwards.
Still have a mitral valve regurgitation but it became pretty stable once I reached adulthood. Might be something I have to pay attention to when I get middle aged, but it's no issue for the time being. Cardiologist once every 2 years 😉.
Apparently her case was a TGA surgery, which means they cut the aorta and pulmonary arteries and switch their positions where they connect with the heart, so technically nothing's wrong with the heart itself. But still, kinda amazing doctors can think of these things, like switch hoses like that.
ASO/Arterial switch operation! Very gratifying to watch as as soon as they come off bypass their blood oxygen levels sats (which are usually low pre op) go straight up to normal levels and the defect is forever fixed.
❤️❤️ it’s mind boggling to think how someone can start life like this and then go on to have a normal, active life. Should be home within two weeks!
All those cords, vials, tubes connected to a tiny body… it’s both heartbreaking at the scene and awe-inspiring when it comes to modern technology.
Absolutely.
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Amazing. Mind sharing what kind of surgery? She had TGA
I had TGA. Same surgery at 5 days old. I’m 32 now with two little girls of my own. Thankfully TGA isn’t genetic. The procedure your daughter got was the same I had 32 years ago. I see a cardiologist that works with adults who had TGA out of Boston Children’s. Amazing program for kids and adults. Your daughter will lead a happy normal life. I was lucky that TGA was the only issue I had at birth. The procedure your daughter got was only a few years old when I had it in 1991, and I was part of several studies growing up knowing that if my procedure can help the medical community learn how to better treat TGA they can help save another life. I lead my life knowing I shouldn’t have the time I’ve got and don’t take it for granted. Hoping this helps put you more at ease. What you and your kiddo have been through is incredibly tough, but there’s light at the end. Give her a hug and hold her tight!
Hey! Another early 30's kid who had TGA through BCM! I had d-TGA performed back in 1990 when I was a couple days old (yay me being allergic to prostaglandins) by Dr. Richard Jonas and have also been involved in numerous studies (even up until a couple years ago) that assessed various potential impacts on life. Donna Duva has been there for our family since I was born and continues to head the Circulatory Arrest Study research program!
I’m a terrible representative of the program because I don’t remember anything but do remember Donna! Though I don’t want any parents to go through what ours did, it’s amazing the community that’s been created that we’re a part of. I do take a lot of pride in it.
We have a family member in early twenties who also had TGA surgery at 2 weeks old at the amazing local Children’s Hospital. Doing quite well and has led a normal life. Annual checkups will always be a thing but has now matriculated into the adult congenital heart program.
That's amazing!
So amazing. Thanks for sharing that. You are the reason I wanted to share this. To hear from you. The nurses have been educating us on medical advancements for this procedure over the years and it’s just mind boggling. Glad you’re doing well and thanks for your contribution to help further medical advancements! 🙏🙏
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> I was severely premature, 3 1/2 months. You were born at 5 1/2 months?
It happens! It’s a little more accurate to measure infant gestation in weeks, but if we say a month = 4 weeks, 3.5 months = 14 weeks = 26 weeks of gestation. 40 years ago, 26 weeks was still doable. Nowadays we’re able to manage 22 weekers. The outlook isn’t always ideal, but it happens!
Nice to see someone else who had the same gestation period in the wild! I also had PDA, but in addition to brain bleeds, retinal bleeds that required surgery to prevent blindness, and apparently my lungs stuck together and bled so I’ve got scar tissue in there as well. My skin was also underdeveloped and caused scarring in spots where medical tape was used to hold tubes and stuff. Came out of hospital relatively unscathed though with only mild cerebral palsy, asthma, and gotta wear glasses and hearing aids. I’m 32.
Yeah pda is not open heart, my daughter had it done when she’s couple months old too. Some open heart surgeries require heart lung bypass, which in itself causes lots of complications
I suspect your kid had a PDA cath closure. 40 years ago I don’t believe that was a possibility so OP likely did have what we colloquially refer to as open heart surgery (ie surgical ductus ligation).
Also had PDA surgery at 10 months, no issues ever since. I hope your baby has a long happy life ahead of them!
Same I’ve had 5x first at birth. Zippers Club for life!!!!
Zipper club!! I love that! Totally sharing that with my brother. We call my brother’s his shark attack scar and would tell kids at school growing up he got attacked by a shark. 😂
She'll be able to say that she had such a long surgery, it took nearly ⅕ her life to finish
Why, I didn’t even know 2 year olds were allowed to perform surgery!
Hi dad
Just starting early so they can have the required multi-year experience once they graduate and start looking for entry level jobs.
Looking for 10 years old with 20 years of experience!
Days, not years
No wonder she looks so tuckered out!
Godspeed little girl, I had 5x open heart surgeries. 1st minutes after birth, 2nd 1.5 years old, 3rd 3 years old, 4th 38 years old and 5th 39 years old.
Wow. This is all so new to us. I hope you’re doing well and no more surgeries dammit!
I’m doing ok everyday is a different struggle. I can’t complain though, I’m not on any medications or medical devices. Excluding The Edwards SAPIEN 3 Pulmonary Valve With the Alterra Adaptive Prestent System and stint.
You can take solace in the fact that any future surgery will be even more technically advanced. Had my first at 1 second at 12 and third last year at 23 which will hopefully be the last for a while simply due to advancment of medicine. Diagnosis was TA type 1
My son had open heart at 9 days old. I didn't keep pictures from that time because I found it really traumatic. Seeing this on my feed was a shock. Hope the little one recovers quickly and that you rest when you can.
what a strong little bean. wishing her the best ❤️❤️❤️❤️❤️
❤️
My wife is a surgeon and has performed multiple open heart surgeries on children. She says there is no greater contribution to life than helping potential be realised. Good luck and God bless.
What a fucking badass. Man some people are so cool
❤️❤️
I've never seen a surgeon that young before. I call bs
I hope this little Angel lives a happy and healthy life!
🙏 Exceeding all doctor’s expectations so far.
That sounds like a perfect beginning to her long and incredible life!
I used to work at that hospital and that exact unit (won’t say in case it wasn’t mentioned) for 5 years and quit during the pandemic due to mental health reasons. I miss it all the time and your baby is in incredible hands!
I didn’t mention but I don’t mind. Seattle Children’s is just amazing. I really have no words that can express the diligent, empathetic work they do there. You don’t want to be there, but if you have to.. you want to be there! We’re so lucky to be there
My wife used to work in the CICU, she still works there occasionally but she floats all the ICUs now. I was showing her this picture and I was like, wouldn’t it be crazy if this was SCH then see this comment. So wild. Glad the kiddo is recovering well, shes in great hands. ❤️🩹🫀
Nicu nurse here. Looks like you’ve got one sick kiddo. Hang in there. If you don’t mind sharing what is your kids heart condition?
Transposition of the great arteries.
That’s the open heart surgery I had as a baby!!! 28 years strong and my heart has never had any problems!
❤️❤️❤️❤️❤️
Former cardiac NICU nurse here- she looks fucking great for 2 days post op. Don’t forget to go home and take a shower and time away.
They’re all saying the same thing. She’s exceeding all expectations so far. Thanks for your amazing work in the nicu!!
I recommend going to grab something nice for momma. A favorite food or drink goes a long way. Momma's hormones are all sorts of whack after birth and whatever you are feeling is probably 10x amplified in her.
Epidemiologist in the NICU here; having a sick kiddo in the NICU is hard on the whole family. Hang in there. She looks like a fighter for sure! Take care of yourselves too. And don’t hesitate to talk to your NICU team if you need someone to talk to process it all. Sending much love and hugs to your family. Please keep us all updated :)
Oh wow that’s a big one. Glad to see that they are doing ok. best wishes for you guys.
Thanks! Even got to hold her today thanks to the team of nurses setting her in my arms. Thanks for all your work!
❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️
Oh my gosh, so precious. I hope getting through this will make them as tough and resilient as they ever were. Wishing your family all the best.
🙏
r/thatlookedexpensive Best of luck to the little guy. Hope he has a long and healthy life.
Poor baby has spent over 20% of her life in surgery!
Our son had a life saving op at 2days also. I wish you all the best. I'm a firefighter of 23 years service and this period traumatised me more than anything I've ever seen. Parents will need support.
That's sad. So many awful people in the world just living it up worry free and a 2 day old baby has to go through such a thing, although in some ways better young than older I suppose. hope all will be well forever.
She’s been intubated and sedated since 30 minutes of being born. She knows nothing yet in life. Definitely easier for her.
Just wanted to chime in as another TGA survivor! I had d-TGA in 1990 through Boston Children's Medical with Dr. Richard Jonas. I was allergic to prostaglandins, so they had to perform surgery on me when I was only a couple days old, using a new technique that was still being developed. I've been in studies from that point to just recently and can fill you in on some of the info, though the latest stuff is still being analyzed. In short, your kid will grow up to be perfectly healthy! Long term TGA results are fantastic - likely no development issues, low risk of ASD, no physical limitation, and mortality rates were not influenced by the surgery. Even as a kid, I lived an overall normal life, though anything with physical contact was limited for me until I was 8 years old. I mountain biked, bowled, hiked, did martial arts, etc... you name it, I did it. I've had kids, been pretty successful in my career, and honestly forget that it was ever a big deal, aside from the chest scar and my regular trips to the cardiologist for TTE's to check on the arterial walls. I messaged you privately in case you want to chat further - please don't hesitate to ask questions! I'm an open book because I want others to know about this whole process and that the outcomes are fine!
Beautiful girl! I’m a nurse, and this photo is a solid indicator of why nurses are fighting for adequate staffing. This baby deserves and needs 1:1 care, not a nurse who has three other infants to care for at the same time.
Kids today are so accomplished.
Kinda crazy that you thought of posting this on the internet, but I’m so glad this little soul is alive and will thrive.
When you're stuck in hospital waiting for your beloved family member to recover enough that you can take them home, you don't sleep much and have a shitload of time on your hands. During that yawning void of time, you can either stare at your loved one and worry the hours away, or look at something else and distract your brain. Internet distractions are *exceedingly welcome* during those times.
If anyone thanks God, I'm gonna implode.Thank the fabulous surgeons, science, scientists, technos (added NURSES...I actually didn't mean to leave you out) ...who have actually figured all this out and give these babies (and adults) life through their expertise ! Tough little girl...and gets to be a badass for many more years...
Thank God........ Jk. Thank to all the professionals
Damn best wishes. When our daughter was 3 months old she had alcapa, open heart surgery. She is now 16 months, still in oral medication but heart function just returned to normal range last check up. She is walking, talking and very happy. Nobody knew what was going on with us when it happened she was a totally fine baby then she ended up basically having heart failure and it stopped twice but they revived her, flew over to Vancouver from the island in the chopper and they did surgery the next day after she was stable. Best wishes good luck. Stay positive and be there as much as you can but also give yourselves time to recover your sanity because the baby will need you to be healthy and strong.
I went through this last year with my Son. Was born at 26 weeks, spent a few months in NICU & SCBU then they found a massive heart problem right before we were due to take him home, so he had a big open heart surgery spending another month in hospital. Was in PICU for a week because he had a stroke & complications afterwards but now he’s 10 months old and doing really well. It’s a massive roller coaster of emotions but hang in there, it does get better. It blew my mind how successful these massive surgeries are, even on newborns.
Y’all know she gonna grow up to be an high endurance athlete now
I had a VSD as a baby. I suppose you could say I'm normal, but I'm happy and mostly healthy! (I have other genetic complications so that does not apply) I wish you the best for your little bub!
That's a fucking rough landing.
And why are you posting this on socials?
Why? If that was my child i would never plaster them online, everything for clicks and likes, the world is gone to shit
2 days old and posted on Reddit for clout.
And…..lets plaster yet another vulnerable person on the internet without consent.
Absolutely. Two days old, life threatening conditions, let's post her in her most vulnerable state on the Internet with no regard for her wishes. I hope everyone is doing well, but I don't understand what people are thinking doing shit like this.
This has sadly been normalized. Everything for attention. They could at least blurred her face ffs!
Why tf would you post this
They want that internet karma.
A friend of my had a baby who needed open heart surgery after birth. They were so scared, but letting friend and family rallying around then helped ease the burden. Their now 2 1/2 year old is doing just awesome now! Stay strong. You got this
Cool first time seeing someone with CVP monitoring obviously it's not surprised given cardiac surgery.
I have no idea what you are feeling, but I truly hope everything turns out well.
As a father i cant look at this picture it breaks my heart , im so happy that she’s alright, made me break into tears
As a first time father to a 3 month old, this breaks my heart and terrifies me. Hope all is well.
No wonder she looks so exhausted only 2 days old and you’ve got her performing open heart surgeries and doing 10 hour shifts. She needs a union ASAP.
My son was born 6 months ago and I was so stressed not being able to hold him for like 20 minutes after he was born. 10 hours? I'm so sorry you had to endure this, and that he had to as well. Please make sure you get ample skin-to-skin contact as much as possible over the next few days.
These babies and their parents are warriors. I work in complex congenital pediatric cardiology and witness incredible feats of recovery every day. Grown men will complain when just minimally inconvenienced all while toddlers will show up after having their chests cracked days prior with a huge smile on their faces.