Learning your child will be diffrent plus esophageal atresia and tracheoesophageal fistula
We nearly lost our son many times. Infections, multiple surgeries, among other things kept us on our toes. By the time my son was two, I had learned that doctors don’t know everything and there is no one way to treat any child for any particular illness. I can remember being second-guessed by doctors and surgeons and being accused of not feeding my son and not being a good mom
An Honest account from a Mother living this life
Learning your child will be diffrent plus esophageal atresia and tracheoesophageal fistula
Just like so many other parents, our journey started off finding out we were having a baby. So often people would ask me if I was having a boy or a girl and I would tell them that I didn’t care as long as the baby was healthy, but to be honest I really wanted a girl. Although I had the sneakiest suspicion that I had a boy anyway. Either way, we had our rainbow baby and we were very happy.
We did not know that our son had physical problems before he was born
Like so many, we did not know that our son had physical problems before he was born. The only hint we had was a single umbilical artery that was found at his 20 week scan but subsequent scans showed he was fine so we figured it was a fluke. Well, It was not a fluke and something was very wrong. When he was born the first thing we noticed was that something sounded really off about the way he cried, it seemed oddly melodic.
After my son was rushed off to the NICU because he was 10 weeks premature, I thought everything was fine.
After having multiple complications that landed me in the ICU with, at most, a 20% chance of survival; I didn’t get to see my son for two weeks. My poor husband had to go between the two of us who were fortunately still in the same hospital. He brought me pictures of my son and told me everything was going to be OK. He was trying so hard to stay positive for his son who had a 50/50 chance and his wife who was pretty much told she was going to die from the moment she made it to the ICU. Obviously I’m not a ghost so I survived.
It was easy to stay detached during that time because I had my own recovery to consider and I had not yet had an opportunity to bond with my son. After I was moved to a step down unit I was allowed to see him for the first time and I have to say it wasn’t easy. It was surreal almost. We were both covered in bruises from failed IV’s and blood draws. We were both still healing and trying to get out alive. He was still paralyzed from the surgery. All I could touch was his foot.
The day after I was released and sent home on bed rest without my baby, I was right back at the nicu to visit him the next day even though I could barely even walk without resting every 10 feet. I couldn’t think of anything else that I could do at the time except cheer him on. My roughest day in NICU was the day that he tried to stop breathing over and over and over and over again. I lost track of how many times in a half an hour my son stopped breathing and the nurses had to rub his back to make him breathe again and it struck me that day how fragile he really was. I was scared to bond with him at that point because I didn’t know if he was going to live long enough for me to bring him home. I started to cry in the middle of The NICU and I had to stop myself because I didn’t want to break down in front of people. I don’t know how to pretty cry… So I went to my car as fast as I could and I just screamed and cried and beat my steering wheel with my hands until they were swollen and bruised.
Over the next couple of months while my son grew, I was told he had reflux. I don’t think I understood exactly what that meant. I think I was kidding myself at the time that once he got out of the hospital, just like me, he would be right as rain.
When he was about to graduate into a step down unit, a doctor sat down with me and tried to explain to me that he was going to have issues throughout his life and that he would need dilations and other procedures in order to thrive. Part of me heard him but part of me was not ready to understand and most of the things that he said it went right over my head anyway. He may as well have said nothing at all but looking back he was the only person There who tried to talk sense to me. I was so ignorant at the time of the things that we were going to be facing. I didn’t even know what these things were and I took everything at face value rather than look it up myself to learn whatever I needed to know.
We definitely have PTSD over this
I had to salvage what was left of my maternity leave so I had to go back to work until the day that Tristan was released from the NICU. We were so happy to be home and together. It was a very short-lived happiness. New babies don’t sleep and babies like mine sleep even less. His reflux was so bad that as soon as I would feed him he would throw up and then I would feed him again and he would throw up and I would feed him again and he would throw up and it got to where neither of us were sleeping I had no idea how much this kid was actually even eating because it seems like he threw up everything he ate. I accidentally overdosed him on his medications multiple times. Honestly, I don’t know how the kid survived.
I felt like no matter what I did my kid was doomed because he had a mom that was so exhausted she could not even manage to give him his medications the way they’re supposed to be done. Why could the nurses do this but I couldn’t?
I thought to myself that I just must be that terrible of a mom because the nurses could keep him on the schedule and keep him gaining weight but I can’t even seem to feed him. I wasn’t even able to breast-feed because of the trauma from his birth. I was still severely anemic at the time as well and doing my best to heal and going through postpartum depression Along with the stress of having a baby with special needs and mourning my dream of motherhood. Or… What I thought motherhood would be.
When the reflux got so bad that he started having death spells I realized that we had a very long road ahead of us. When doctors told me he needed surgery to stop the reflux I tried to wait to see if it will get better and he almost died because of my reluctance to surgically alter him more than he already was. The idea that he was going to have a permanent feeding tube not only broke my heart for him but for me too because it was not only an outward representation of the fact that he was not normal, it was an outward representation of my own failure to take care of my baby.
This time when he had surgery I got to be there with my husband and we watched them take our baby down the hall to cut him open. This time it was different because we had had time to bond and get to know each other and I was handing someone a scalpel and saying go ahead. I felt like I was doing a great injustice to my kid. Looking back, I did what I had to do. Someone should’ve told me to bring a box of tissues because no matter how many times your child takes a walk down that hallway you’re going to need a box of tissue.
The first couple of years were a haze of exhaustion, depression, fear, panic, and learning. My husband was working full-time and going to school full-time as well so he was rarely ever home. My son was never home from the hospital from 1 to 2 weeks at a time before something else for happen and he would be there again. Even a simple cold would land him right back in the hospital. It was like jumping from one emergency to the next without let up. Looking back I can see why we might have some poster medic stress over this. I should correct that… We definitely have PTSD over this. There’s no might about it.
We discovered he had many other issues
We nearly lost our son many times. Infections, multiple surgeries, among other things kept us on our toes. By the time my son was two, I had learned that doctors don’t know everything and there is no one way to treat any child for any particular illness. I can remember being second-guessed by doctors and surgeons and being accused of not feeding my son and not being a good mom. Not just by doctors but family members and people who called themselves my friends. People started to judge me because my son was so sick and it hurt. It paled in comparison to what I needed to do though so it was easy to move on from that. It still stings a bit though.
Our children are extraordinarily unique and a one-size-fits-all treatment approach doesn’t work for everyone and after strictly listening to doctors and not doing my own research almost cost me, my son, a few times, I learned to rely on my gut instincts. In my experience, the gut is never wrong.
As my son got older, we discovered he had many other issues in addition to the esophageal atresia and tracheoesophageal fistula. We learned that he had a single kidney, dysphasia, a heart defect, scoliosis, fused ribs, developmental delays, chest wall deformities, lung disease, kidney disease, tracheal and bronchial Malaysia, Hydromyelia, syringomyelia tethered spinal cord, autism, ADHD, fused vertebrae, and probably a few other things we don’t know about yet. I don’t know what the future has in store for us but I’m pretty sure it’s going to be exciting. There’s never a dull moment with this kid. He’s worth every single battle though. And a thousand more.
And for the record
Some of the hardest things about having a child born with birth defects is that your friends fade away, Family members accuse you of having Munchhausen syndrome by proxy because it seems like every time you turn around your kid is sick again. Some people may call you dramatic Since every time they talk to you you speak as though your child were at deaths door. Usually they are a knocking… Fortunately death has not answered in our case just yet and I’m grateful for that.
My world got a lot bigger when I met Steve Wales. Funny I don’t even remember how I did it. I just remember being grateful that they were people out there who were working to help people like my son. Kids like him don’t have much of a chance unless they have a family who loves them and is willing to do anything for them. And our kids need all the help they can get. I hope that even though my story is a continuous one that has remained difficult over the years that it does not scare you. It’s not meant to. Some stories are fraught with difficulties like ours and some never have an issue after they get repaired. It’s important to know all sides and not just the ones that are an overwhelming success. Most cases are a middle ground of good and bad. It’s important to remember that yes even though my son has gone through many difficulties and it has broken my heart into 1 million pieces 1000 times over that we keep going and working and striving to make things better and it’s what we will continue to do for long as he lives… maybe even longer.
Our Journey is by no means over. Our son and Us have a long way to go. We look to all of the other parents and adults who were born with this condition to guide us and help us understand what to expect for our children and we’re very grateful for those who are looking to help our children have not only a happier life but a longer life.
Probably the most important lessons that I have taken from being a parent of a child like my son are these:
And for the record, there are a lot of lessons so I hope you have time to read them all. They may not make sense in the beginning but anyone who has lived this life will tell you that they are useful and if not well they’ve been useful to me so I’m gonna share. Take what you can from it.
You will have to find humor wherever you can. Laughter is the best release of tension in the world
I did not land in Holland as the story goes. I landed in Siberia with only swimsuits and flip flops. There’s a really big difference here trust me.
Although some people say it gets easier, I suppose that’s true for some. For the rest of us, it does not get easier. You do, however, get used to the roller coaster that is medical complexity.
Learn how to cope with stress. If you don’t you won’t make it. I know that seems harsh but it’s true. Learn how to manage your stress or it will manage you and I guarantee you it wins every time it manages you.
If you haven’t already learned this lesson, you will soon that the world is bigger than just you and you’re going to need all the help you can get and sometimes it means you advocate, sometimes it means you need to cut off some people, and sometimes you will gain friends you never thought possible.
You will understand what it means to be humble in the understanding that you truly don’t have a whole lot of control over what happens sometimes. I have to save it for the first time in my life I actually understand what Nicole Kidman’s character was telling Tom Cruise when she said the control is an illusion. I totally get that now. And I hope I did not just give away my age.
You find yourself learning about one organ system after another until you feel your head is going to explode. Sometimes it does and then you have a lot more room to learn something new. I have personally found that it helps to take what you are learning that seems complicated and try to draw it out onto a piece of paper and simplify it as though you are explaining it to a child. This makes it much easier to learn and make sense in your own mind of what you’re actually trying to see and understand. I don’t know if that makes sense but there you have it.
Sometimes you feel very overwhelmed & ill-prepared for what life has presented to you. These moments as learning opportunities not as failures. You will come out smarter. I promise.
A stone left unturned is a stone that someone will hit you in the back of the head with. You know that one thing that seems odd about your child but it doesn’t seem to be important? Well, That one thing is usually the one thing that you should’ve paid attention to. Unfortunately, medically complex kids have so many things going on at once it is truly impossible to track them all with equal intensity. So cut yourself a little slack.
You’re going to learn the value of a good scheduler. Because I can tell you that juggling doctor that cover every single organ system and then some to cover multiple organ systems and therapists and specialists and surgeons …… it’s very hard to keep up with them all and not double book your appointments. You’re going to need at the very least a very detailed scheduling book so that you have everybody’s information at every single moment every single day because the moment you don’t have it is when you’re going to need it.
You’re gonna learn that you will never travel light again. I know all parents say this but is especially true of people like us because our kids do not travel light in any sense of the word. When we have to go see my grandmother, we practically have to rent a bus because none of it’s going to fit in our car.
Take advantage of everything you possibly can while your child is in the hospital. Learn the verbiage so that when people do something to your child you can ask what they’re doing why they’re doing it and actually understand what they’re telling you. Also, learn how to read the monitors. This is one of the most important things because it could be life or death for our kids. If you’re in the United States we have Social Security income that you can get for a disabled child. Start that process while your child is still in NICU so that by the time your child comes home you’re all set.
You cannot have too many spit rags. If your child has reflux like most of ours do you’re going to need them and a lot of them.
Keep a print out of all of your child’s medical issues and your doctors and all of their addresses and phone numbers so that when you see a new doctor you can simply add that to the file and not have to do 1001 different pieces of paperwork and having to explain over and over and over again what your child issues are. I know that personally I tend to forget half the things that my kid has. In my defense, he has a lot and I’m very tired.
You will learn what real stress is. Real stress involves life and death. It is not whether or not you fit into your jeans, it’s not a pan that got ruined because you burn something on the stove. It’s not whether or not you have good credit.
You will learn that there’s more to life than money because parents of kids like ours are usually broke and that’s OK.
Most people are not gonna understand why you say and do the things that you do. They’re gonna look at you like you’re crazy when you freak out that they just fed your child a piece of a hotdog because aren’t you just happy that they wanted to eat something?! Explaining it can be very difficult because the majority of explanations go right over peoples heads unless they’re in the medical field.
You’re going to discover when people are truly interested in what’s going on with your kid because if anyone takes the time to actually ask you how things are going you’re going to start word vomiting everything that’s going on and when the majority of the words you use are complete flybys… Interested people will ask you questions. If they’re not, Their eyes were glass over because they no longer have a clue what you’re saying.
People are going to make fun of you for being the helicopter parent. Just get used to it and own it because we do what we have to do and it doesn’t really matter what anyone else thinks.
Find special celebrations and milestones. Every single milestones our kids make is one that we are very happy they are here to make. Every time my kid games 10 pounds, we party. It’s very difficult finding celebratory decorations for weight game but we do our best.
You’re going to start eyeballing every person with the sniffles within a 20-foot radius every time you leave your home. You’re also going to learn that respiratory viruses are exceedingly dangerous for our kids and should not be taken lightly.
It’s way too easy to beat yourself up when you make a mistake. It’s important to remember that you are not a doctor and you have not gone to school to specialize in the things that are going on with your child. Heck, even the doctors make mistakes and they’re professionals!
You will adapt…. Sometimes you’re going to rail against the changes that come about but don’t worry. You will adapt and so will your child.
I think I covered this but it deserves to be said again. Always bring a box of tissue whenever your child has a procedure. Even if you don’t need it yourself someone next to you will and nothing makes you feel quite as good as helping someone else through a very difficult time. Sometimes your compassion makes their day just a little lighter.
You’re going to have some bad days and you’re going to have some good days. Good days are easy to handle. On the bad days just concentrate on breathing and Do whatever it is you need to do. Sometimes it’s all you can manage to just breathe… On those days just concentrate on taking things one breath at a time. Remember this is just one moment. And moments pass.
last but not least… You will have to find humor wherever you can. Laughter is the best release of tension in the world
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