It took three and a half months and six surgeries, but my son is home from the NICU (with a...

[JenDiggity]

Hi all! I wrote a while back, while I was still pregnant, about learning that my son would be born with a birth defect called esophageal atresia. I had him a bit early and yep, he did indeed have EA along with several other defects of his midline. As a result he has a g-tube and j-tube (the former for reflux meds and the latter for feeding) and a tracheostomy. I'd love to talk to other moms or dads who have children with any of these issues or who can just relate to this new experience. The trach may come out soon - he had a repair to his trachea and needed a stable airway and a good thing since he had major scar growth, but they removed it and hopefully it will not regrow and we can kiss that thing goodbye soon! But, the g and j tubes will be there for some time. It's such a different experience than I had imagined...no bottles to prepare, no waking up crying because he's hungry, no real audible crying (trach blocks the air from going past his vocal chords), and no spitting up milk (just meds and spit once in a while!). There's also no going anywhere for 16 hours out of a day without dragging his feeding pump along, no napping with him (he has to have eyes on him 24/7 because of the trach), no more sleeping in the same bed with my husband, and constant worry that I'm going to pull those damn tubes out! Friday marks just one week home. It's all very surreal. He may have issues, but I wouldn't trade him for anything! I am exhausted, overwhelmed, and, did I mention, exhausted? But I'm LOVING being a mom to this little boy!

[moongazer]

Congratulations on the birth of your LO and finally being home!! My ds was born with EA/TEF (type D) also. We had the G/J tube but not the trach. I had just been thinking about how overwhelming those first few weeks were. But it does get a lot easier over time as you kind of find your groove.

And surreal is the perfect word for it. It took me a long time to realize that it was really just the mechanics of taking care of him that were different, not the actual mothering. But it sounds like you already have that figured out!

[2boyzmama]

Congratulations!!! Welcome home little guy!!!!!!!!!

I'm so glad he's doing well It will take time, but you'll get into a routine, somehow!

[WindyCityMom]

Congrats mama! I just wanted to wish you and your son a safe and peaceful journey

[isisreturning]

Welcome home, both of you! Being home with all that complex level of care is tough - and yes, exhausting - but it is also nice to be home, out of the hospital. My DD was on TPN and continuous G feeds for quite a while. I carried her a lot in the Ergo carrier - I would wear the feeding/TPN backpack on my back and carry her in the front and let all the cords dangle to the side. Congratulations on making it this far and best wishes for your continued journey with your DC. You will get used to it - probably not less tired, but used to it. And hopefully the trach will come out sooner rather than later so you can sleep a little easier.

[KCMichigan]

I just wanted to say welcome home to your little one!

I dont have experience w/ g/j tubes, but my preemies did NICU and came home on monitors & a tons of meds.

Welcome home!

[JenDiggity]

Thanks for the encouragement, guys! I have already noticed, over the past week, that we are all getting more comfortable with the new routine. As we fine tune things it will hopefully be even better.

IsisReturning, did your daughter have any liver issues after being on TPN? Oliver was on it the first month and a half and is now dealing with liver damage and nutrition absorption issues because of it. His numbers keep trending better, but it's still scary to have one more thing to worry about.

Moongazer, my son had type C and was connected at 5 day old. He just had his first dilation last week. How is your son doing now? Does he still have the feeding tube? Does he eat by mouth at all? Do you know about the EA/TEF Facebook page? It's pretty active. I'm really grateful for the support I've had from other moms with babies who had EA/TEF.

[moongazer]

DS was repaired at 24 hours old and has had 3 dilations so far. He was in the NICU for 34 days. He is almost 18 months old now and doing well. He needed the feeding tube because of aspiration issues which resolved at around 3 months, even though he still has a paralyzed vocal chord. Now he is breastfeeding and eating table foods. He can eat pretty much anything, although he does choke often. We just cut everything really small for him.

I have seen the Facebook page and it is great!

Have you begun Early Intervention yet? Where I live, EA/TEF automatically qualifies them for services for the full three years. It has been a huge help to us.

Let me know if you have any other questions. It is so nice to connect with other parents dealing with similar issues.

[Lindsay1234]

YAY!! Congrats!!!!

[Emmeline II]

It takes about a month to establish new "habits" so eventually this will feel "normal" .

[kathymuggle]

Hi!

My DD (7) was born with tracheo-esophagail fistula/esophagael atresia. She was not diagnosed till birth. She has surgery to repair it at 14 hours old - and was in the hospital for 10 days (which is very short - but her repair went very well).

She left the hospital nursing and we had no issues until she started solids at about 6 months, Honestly, if I knew it was going to be a problem, I might have delayed solids. The food would get stuck in her esophageous, and she would make these horrible noises (like a strider - people though she had croup) and we would go off to emergency. This must have happenned about 5 or 6 times. She always coughed the food up on her own - but it was scary. It was also frustrating because the hospital always wanted to do an exray when I just wanted her to be in a safe place while she worked the food out. Apples and chunky/doughy bread (like pizza crust) caused most of the "stuck" issues - she was not allowed apples until she was about 4..

She outgrew the food being stuck around 2, and firmly outgrew it around 4. We did not have to visit the hospital after 2, though.

She was, and still is, somewhat prone to pnemonia. If she gets a cold it goes straight to her chest. I am pretty sure the early pneumonia was due to food going down the wrong tube, so to speak - or the scar tissue near the tracheo. I now think it is how her body handles colds, etc. Sigh. We have started using asthma medication when she shows first signs of colds going to her chest - and it has helped. I do not think she was on antibiotic once last year!



Lastly, her front teeth looked like baby bottle decay (and she was exclusively BF). Funs times at the dentist I am pretty sure it was caused by the antibiotics she needed, and the food gagging issues. There may have been some reflux issues - but I do not know. She was not on medication for reflux - the evidence did not point to her needing it. Who knows?

All this being said, she is a reasonably healthy child. She is currently playing Super Mario with her brother. She can eat anything she wants, and her teeth have been fixed. Some of her adult teeth have caoe in - and they have been fine. You would not know she was born with a birth defect unless I told you. About 2 years ago I stopped writing that she had a TEF/EA on forms (camp and such). It doesn't affect anything anymore.

I sincerely hope your son does as well as my DD has done! Enjoy the baby and congrats on bringing him home Pm me if you need to!

Kathy

[anj_rn]

My DD has both a trach and a g-tube (she stopped breathing at 4 months and has an anoxic brain injury). So first of all, I know it is overwhelming and hard, but I promise it will get easier as you adjust to the schedule.

Here is my top list of things I wish people had told me to do.

1. If you do not have Medicaid yet, apply. You should be able to get it through the Katie Beckett Medicaid since your child has a trach & G/J tube. It can even function as a secondary to your private insurance and will cover copays, etc.

2. Also, do you have home health nursing set up? This is a must for a trach, since it will provide you with some downtime for you to shower, sleep, run errands, etc.

3. Either call Early Childhood Intervention, or go through your insurance to set up home health therapy. Speech can start working on oral motor skills long before you are ready to feed. ECI is easier for you (one call, they take care of everything else), but private therapy is more intensive (IME).

4. Ask for a Passy-Muir Valve. This is a speaking valve that goes over the trach. It allows them to breath in through the trach, but forces them to breathe out normally, so they can have a voice. I have never been happy to hear a baby cry as when we got ours.


I know how overwhelming it can be. If it helps, I was scared to shut my eyes for a second at first. Now, one year post injury, we snuggle in bed together and nap together regularly. It took us a while to figure out how to arrange the tubes & monitors, but now we are pros.

[minmoto2]

Congrats on bringing him home!

My ds also was diagnosed w/ea/tef type C. He was diagnosed at birth with repair on day 2 of life. He came home at 4 weeks, nursing & on reflux meds. He had 5 dilations his first year. He also had tracheomalacea so we couldn't hear him cry or laugh..he would turn purple when he was really mad, but never any blue spells. We delayed solids as long as we could...til almost 8months.
He is now 23months and doing great! He is an awesome, normal toddler
We have choking issues occasionally, but he has been able to get 'unstuck' himself thus far. He is also prone to pneumonia. His first was last December & he was hospitalized for a week. He has had 3 since then, the last in June. We can finally hear his laugh, unless he is cracking up

Feel free to pm me anytime for questions or support. Enjoy your baby boy!

[Lisa1970]

Congratulations!!! I am glad he is home!

[AnalogWife]

That is wonderful news, congrats!

[pixiekisses]

Congrats, and welcome home! Great news.

My little miss cotton ball button has a GJ-tube and a central line, she's been on TPN too and probably will again (but it's not good, can't follow her much needed diet etc.), for now just J-feeds and the G for draining.
You'll get used to brining the extra equipment along everywhere, it's an adjustment, but eventually you'll be more "what, your kid is cord less?!".
We use a backpack for feeding pump, small o2 in there as well (the light weight ones) so I can just put her on that when she wants to run around (bigger o2 goes on her chair), and we put the farrell on the backpack too, as well as the small pulseox. It's doable. She can carry it now so she can be more free (we always have to have eyes on her), but when she was little, one of us had the backpack and we carried her on the front in MT or whatever.

[Scooterpie]

Yippee!! Congratulations to you and your AT-HOME family!!

Our DS was 10 wks early and stayed at Children's Hospital for 6 months before he came home with a feeding tube (just G) and a trach and ventilator with 24/7 home health nursing. The reason for his trach and ventilator was chronic lung disease, so it was a little different than what you have on your hands.

I agree with some previous posters about some tips. We had medical assistance set up, so we weren't crushed by medical bills. We accessed therapies (OT/PT/speech) through the school district as well as Courage Center. We found that the private services were able to help sooner and seemed more knowledgeable in their specified area - he had different specialists for each therapy. Speech worked his eating as well and I wish we had been in contact with Courage Center sooner because we had already developed oral aversion by the time they came in to help and it just took a longer time to get him to eat again. We had tried to feed him bottle early on, but the g-tube was just too easy and we allowed feedings to take a back seat to everything else. I wish we had given each concern proper attention from the beginning.

We used a double stroller when we went out, one spot for DS, one for all his equipment. It worked pretty well for our situation.

The passy-muir was fabulous! We waited a long time to hear our sweet boy and were so happy when he could finally hear his own voice too.

What kind of nutrition is he getting via his gj-tube?

I'm so happy for you guys getting to be home. We've been back to the hospital a couple times since our boy was born and each time we wonder how we did it for 6 months. He really thrived at home and is almost 4 years old now, is way ahead of the curve cognitively, something doctors weren't expecting because of how medically fragile he used to be. We just have scars now.

There are videos on YouTube of kids on passy-muir valves, so you can have an idea of what they're like. You can watch our little guy his first time HERE.

We have other videos up too, including his final trach cares...the day before he got his trach out.

Let me know if you have any questions or I can help in any way. Enjoy your sweet one!

[texmati]

Originally Posted by JenDiggity

But I'm LOVING being a mom to this little boy!

Congratulations!!! and welcome home little one!

[isisreturning]

My DD didn't have issues from TPN - amazingly. I read one study that suggested cod liver oil could help mitigate the liver problems associated with TPN.

[MotherWhimsey]

Hey, my son has a G tube, J tube and o2. No trach though and no TEF. What kind of feeding pump do you have? You need a zevex if you don't have one, they're teeny tiny. You'll figure out your groove pretty quickly and it'll all just become fairly normal. Maybe a pain in the butt, but very normal all the same.