Hello. This is my first time posting so forgive me if it's not the best. My daughter is 14 months old and has esophageal atresia and tracheoesophageal fistula. I have searched and haven't found a community for esophageal atresia and tracheoesophageal fistula. I was looking to possibly start a thread for other people who's children have this as well. I think it would be nice to be to have other parents to communicate with. Let's hear your stories!
Hello, fellow NICU parents. We are first time parents and are looking for some advice on dealing with a possible discharge of our baby with long gap esophageal atresia.
Here's the background (long post). We were blessed with didi twin girls who were born exactly at 37 weeks after I developed preeclampsia. One of my twins was born with esophageal atresia and right after her birth, a pic line was placed and used to provide nutrition and hydration. She was also placed on continuous suction to prevent aspiration.
5 days after birth, a G tube was inserted and feedings started to stretch out her tiny stomach. The pick line was removed after 3 weeks since she was/is tolerating her feedings well and is gaining weight at a very healthy rate.
On January the 2nd, she finally had a gap study done to tell us if she could finally get her repair done. Unfortunately, we were given the diagnosis of long gap esophageal atresia and were told it would be a long time before anything could be done/attempted since the gap is 4cm long.
I have visited every day and have gotten all information of her progress from her nurses and the neonatologist. We haven't spoken to any surgeon, but have been told the surgery team is well versed on my baby's case/condition and that is why they decided to wait for her repair.
As of Thursday of this week (1.5 months in the NICU) we were contacted by the NICU's case Manager who said one of the surgeons wanted to send baby home to grow enough to get her repair. They started ordering several machines for us to feed, monitor, and suction her, and were trained on those machines today.
This is the part where we need advice... we spoke to her neonatologist today who said it is very, very uncommon to discharge babies with esophageal atresia but, according to the surgeon, she's doing so well they want to explore that option. Now, we have been clear that although we would love to finally have her home, we do not want to place her in any danger by rushing into things especially because of her needing continuous suction and the fact that they haven't found a portable machine that can do that for her. Also the fact that the neonatologist didn't seem too sure about this plan, doesn't help with our worries. We are now trying to figure out if this really is an option or not. Has anyone heard of this happening? Also, if this is not common practice why would this even be an option per the surgeons?
My esophagus didn't develop right and didn't connect to my stomach.
The story of my son Lucian, who will be 8 in December, is at this point so long and detailed that it could fill a medical journal..
Being told that we were having a completely normal, healthy 8lbs. baby boy, my son was born 4lbs. 9oz. with esophageal atresia and down syndrome. Esophageal Atresia is a condition in which your esophagus ends in a "pouch" that does not connect to the stomach. After spending the first year of his life in the hospital and going through numerous surgeries, we were finally able to come home.
The original plan was to have Lucian off of the G-Tube by the time he was 5, but multiple issues arise and we've been unsuccessful in our attempts. Lucian now has a GJ-Tube and has to wear a backpack that feeds him continually.
Because of these recent events, Lucian has been pulled from school and has had so more doctor, therapist, and nutritionist appointments than I can count. We finally think we've gotten somewhere, but the doctor is in another state that won't accept our state's insurance. We have to find a way to do this ourselves.
We're hoping people can find the time to send Lucian get well cards in the hopes it will lift his spirits.
Recent articles about Lucian and his condition:
Family faces obstacles in boy’s rare illness
Family Of Boy With Rare Illness Facing Financial Struggles
Thanks Reddit.
Hi /assistance,
Posting this to try and get some help for a friend of mine in deep need of donations for her baby's surgery.
Details of baby's condition as written on their GoFundMe page:
*Let me introduce myself to you, my name is Abba T. Buenavista 33 years old and I am from the Philippines. Last May 21, 2012, I gave birth to a child and was born pre-term at 32-33 weeks via cesarean secondary to fetal distress at a hospital in Dumaguete City, Negros Oriental. He was then referred to a hospital in Cebu City (Chong Hua) due to suspected Esophageal Atresia. On the 3rd day of admission at Chong Hua Hospital, an esophagogram was done which revealed presence of esophageal atresia. Our son had thoracotomy. ligation of TEF and insertion of gastorostomy last June 4, 2012. The operation to connect the esophagus and his stomach was unsuccessful since it has a long gap of 3cm. He is still on mechanical ventilator until now, and he needs to have another operation called esophagostomy.
With the baby boy's delicate stage, complications were found and immediate medical attention requiring surgery was strongly recommended by the physician. Financing the medical costs has been the greatest challenge for me and my family has ever encountered given the current situation we are faced with. We are determined to pursue whatever medical procedures required for the baby but our financial situation poses as a hindrance in doing so. At the moment, my son Marion Sid Hendryx Undag is confined in Chong Hua Hospital under the Intensive Care Unit (ICU).
In this connection, I am humbly asking any financial assistance from you to aid us in the pursuance of Marion Sid Hendryx Undag's medical operation(s). Any help will be treated with utmost gratefulness. Should there be a need to contact me, I may be reached through my personal mobile number [will PM if needed] or my email [will PM if needed]*
Updates on the baby's condition can be found on the same GoFundMe page: http://www.gofundme.com/Help-for-Marion
Thank you Reddit!
Hi all, I'm a very long time lurker but I've never posted before, but I'm struggling to make sense of my birth story and I'd appreciate any words of encouragement or advice.
I'm a ftm, induced for cholestasis at 38 weeks. My cervix wasn't dilated at all, no signs of impending labour prior to induction day. I arrived the day before to be dilated by foley catheter which went ok.
My memories of the actual day of delivery is really hazy sorry.
On the actual induction day they checked my cervix and said it was still quite high, and it was hard to break my waters. Eventually they managed with me on nitrous oxide, it was very painful but nothing like contractions later.
I was then put on a Pitocin infusion and started contracting quickly. After a few hours I couldn't keep up with the nitrous and asked for an epidural.
Initially the epidural wasn't sited properly, so I was still needing nitrous throughout the contractions. Eventually it was sited properly and I managed to calm down.
Close to 9 hours in, I started shivering uncontrollably and was told I had a fever. They just kept an eye on me, I remember feeling really really cold.
I started pushing around hour 10 but after one hour the doctor told me my baby hadn't moved an inch. She recommended a caesarian. I said yes as I was exhausted. I barely remember the caesarian, and was sleeping in and out of consciousness in recovery.
When I arrived to the ward they gave me my baby to breastfeed. But from that day onto the third day when I discharged, I don't know how to describe it but I felt like I wasn't me. I felt like I was watching a movie, and that nothing was real - my husband was a dream and my son was a dream.
On the day of discharge a nurse noticed my baby having some difficulties breathing and he was taken to the resuscitation trolley. They found that he had a large amount of fluid in his lungs and he was transported to the NICU, where he was admitted for having a transesophageal fistula and esophageal atresia. I lost it and cried the whole transfer to the NICU.
I've also been readmitted to hospital for a hematoma in the incision site causing significant pain. I'm getting better, but I still need significant help going from lying to sitting up.
I don't know what to make of all this. I feel so detached from everything. Nothing about my birth made sense to me as one thing happened after another. I was just wondering if anyone else had a similar story to share or advice for me? Thank you.
Well do I have an xray for you:
https://imgur.com/Q88Enuj
My husband and I are absolutely devastated. We found out we were expecting in July, and we were over the moon with excitement. We have had a great pregnancy, and I have been happier than I have ever been. We moved states to be closer to family for this next chapter, purchased a home with the perfect nursery, and finally felt like things were falling into place. My due date is my moms birthday, who passed away in August of 2020 of cancer, and this baby truly has been my angel. Of course, things have taken an awful turn. At our anatomy scan this past Friday, which I had at 21 weeks and 1 day, we found out our sweet boy is missing a chamber of his heart, a kidney, most of his right arm, has a single umbilical artery, likely spine deformities, a 90% chance of anal atresia, and moderate chance of tracheo-esophageal fistula (the final two cannot be known until birth, and the third trimester, respectively). This diagnosis was completely unexpected, we had no prior indications anything was wrong.
His official diagnosis is severe VACTERL association, which is truly a sliding scale of severity and in some scenarios a child can live a long and happy life. Unfortunately for us, and our diagnosis, this does not appear to be the case for our boy.
I spent three full days talking to parents of children with VACTERL, and the only ones who had severity close to ours had lost their babies just after birth, one even explained that their girl had an identical diagnosis and within an hour of birth had been put on morphine to pass peacefully. With that being said, my husband and I have made the freaking impossible decision to TFMR. Unfortunately, due to the holiday we have had to schedule it for the end of next week, when I will be 23 weeks the day of the procedure. I am devastated. I feel like I am losing a part of myself, but I KNOW that this is the best option for my boy. I just feel lost, and like I am in purgatory because I haven’t even made it to the worst part yet. How do people make it through the waiting period before a TFMR? I know that my pain right now is NOTHING compared to what is coming next, and I just don’t know how I’m going to get through it. My husband has been amazing, and he is feeling the loss too. I could just use some support and guidance because this is such an isolating situation.
I don't want to step on anybody's toes here, but the amount of non-dad jokes here in this subreddit really annoys me. First of all, dad jokes CAN be NSFW, it clearly says so in the sub rules. Secondly, it doesn't automatically make it a dad joke if it's from a conversation between you and your child. Most importantly, the jokes that your CHILDREN tell YOU are not dad jokes. The point of a dad joke is that it's so cheesy only a dad who's trying to be funny would make such a joke. That's it. They are stupid plays on words, lame puns and so on. There has to be a clever pun or wordplay for it to be considered a dad joke.
Again, to all the fellow dads, I apologise if I'm sounding too harsh. But I just needed to get it off my chest.
Do your worst!
I'm surprised it hasn't decade.
For context I'm a Refuse Driver (Garbage man) & today I was on food waste. After I'd tipped I was checking the wagon for any defects when I spotted a lone pea balanced on the lifts.
I said "hey look, an escaPEA"
No one near me but it didn't half make me laugh for a good hour or so!
Edit: I can't believe how much this has blown up. Thank you everyone I've had a blast reading through the replies 😂
It really does, I swear!
Because she wanted to see the task manager.
Heard they've been doing some shady business.
They’re on standbi
but then I remembered it was ground this morning.
Edit: Thank you guys for the awards, they're much nicer than the cardboard sleeve I've been using and reassures me that my jokes aren't stale
Edit 2: I have already been made aware that Men In Black 3 has told a version of this joke before. If the joke is not new to you, please enjoy any of the single origin puns in the comments
So we haven't had a NIPT, but are in limbo for an amnio. My wife was found with severe polyhydramnios at 34 weeks. Everything else about the pregnancy and all routine monitoring was normal until this point. Our growth ultrasound has esophageal atresia, possible orbital hypotelorism (it doesn't look as extreme as they are saying), short upper extremities, and a pertruding upper lip (again didn't see that she has my family's profile). Definitely had signs of esophageal atresia. The way the MFM specialist talked like we have a genetic disorder and pulled an amnio with results still pending. Naturally we are terrified as the findings on paper appear to be trisomy 13. We hear story after story of people who were told this stuff, but it wasn't true. Our OB feels it is just the EA and not any of the other stuff. I'm emotionally drained and lost. We can't bring ourselves to finish the nursery because we are scared that we won't have a baby to bring home.
Pilot on me!!
Nothing, he was gladiator.
Or would that be too forward thinking?
A play on words.
Dad jokes are supposed to be jokes you can tell a kid and they will understand it and find it funny.
This sub is mostly just NSFW puns now.
If it needs a NSFW tag it's not a dad joke. There should just be a NSFW puns subreddit for that.
Edit* I'm not replying any longer and turning off notifications but to all those that say "no one cares", there sure are a lot of you arguing about it. Maybe I'm wrong but you people don't need to be rude about it. If you really don't care, don't comment.
What did 0 say to 8 ?
" Nice Belt "
So What did 3 say to 8 ?
" Hey, you two stop making out "
When I got home, they were still there.
I won't be doing that today!
[Removed]
Where ever you left it 🤷♀️🤭
This morning, my 4 year old daughter.
Daughter: I'm hungry
Me: nerves building, smile widening
Me: Hi hungry, I'm dad.
She had no idea what was going on but I finally did it.
Thank you all for listening.
The story of my son Lucian, who will be 8 in December, is at this point so long and detailed that it could fill a medical journal..
Being told that we were having a completely normal, healthy 8lbs. baby boy, my son was born 4lbs. 9oz. with esophageal atresia and down syndrome. Esophageal Atresia is a condition in which your esophagus ends in a "pouch" that does not connect to the stomach. After spending the first year of his life in the hospital and going through numerous surgeries, we were finally able to come home.
The original plan was to have Lucian off of the G-Tube by the time he was 5, but multiple issues arise and we've been unsuccessful in our attempts. Lucian now has a GJ-Tube and has to wear a backpack that feeds him continually.
Because of these recent events, Lucian has been pulled from school and has had so more doctor, therapist, and nutritionist appointments than I can count. We finally think we've gotten somewhere, but the doctor is in another state that won't accept our state's insurance. We have to find a way to do this ourselves.
We're hoping people can find the time to send Lucian get well cards in the hopes it will lift his spirits.
Recent articles about Lucian and his condition:
Family faces obstacles in boy’s rare illness
Family Of Boy With Rare Illness Facing Financial Struggles
Thanks Reddit.
