Over the last seventeen months Olivia has seen tons of doctors and specialists. She has seen her pediatrician (of course), cardiologists, GI specialists, a urologist, ER physicians, surgeons, anesthesiologists, plus countless nurses and therapists. I am extremely grateful to each and every one of those people for helping Olivia, especially to those who saved her life. However, doctors have tons of patients. They are helping and saving people every day and as much as they try, they can never fully understand everything you are going through with your child (unless of course they are going through it with theirs). During the (almost) six months that Olivia had a feeding tube, the doctors just kept telling me "this is common in heart babies", "don't worry, we can always schedule her for the G tube surgery" or "everything will be fine, she just needs more time". They were wrong. If I didn't make a change, Olivia was going to be bound to that tube for years. I've talked to other moms in similar situations, some of them had kids that were 5 or 6 and still using a G tube. I knew I had to do whatever I could to help Olivia. I understand that not every child has the ability to eat on their own and for them, the G tube is a life saver. I also understand that a G tube is not the end of the world and certainly not the worst thing a child needs. I know it's crucial for a child to get adequate nutrition, especially when they are so young. With all that being said, I knew in my heart that Olivia could do it on her own, they just weren't giving her the chance. The G tube was an easy fix and that would solve the problem for them but I wasn't going to give up that easy. I did not want my baby going into surgery again (even if it was just minor). I did not want her throwing up because she was getting fed too much. I did not want her to be in any sort of pain. I did not want her to have limitations. I did not want her to give up on food and most importantly, I did not want her to think I ever gave up on her. I truly love all of Olivia's doctors but they didn't know. They didn't know the struggle we were going through, even if I complained to them for a few minutes, they couldn't possibly understand. They weren't at home with us, they didn't see her reaction to having a tube placed and even if they did, it would never break their heart like it broke mine. They didn't see her vomit every feed or cry because of her acid reflux pain. I felt completely helpless and I broke down one day and cried on my kitchen floor for over an hour and when I was done, I said that's it.. enough is enough. I stayed up for hours upon hours every single night doing research about tube feeding, acid reflux, heart defects, feeding therapy. The internet is an amazing tool and I suggest to any parent struggling with their child's health to use it. There are so many support groups, websites, blogs, even Facebook has tons of groups for just about anything, it's endless. No matter what is wrong, someone else is experiencing it and the internet will connect you with them if you do the research. Just knowing that you are not alone is a huge help, talking to someone else about your fears or your child's diagnosis can calm you down. Getting advice from someone who has been in your position before, just for that small glimmer of hope that everything could work out for you too, it's worth it. If it hadn't been for the "tube fed kids deserve to eat" website, Olivia would have a G tube right now. All I had to go by before I found that site was the doctors and they were ready to send her into surgery. The moms on that website helped me more than I ever could have imagined. Strangers. Strangers who instantly connected to me because their child was going through the same thing, it's amazing to me. Even though a lot of it is scary and may leave you with questions, at least you can get answers from the doctors about it, at least you have good questions to ask. Any little thing I found online, I would write down and ask at her next appointment. I couldn't have cared less if I was being "annoying" or asking too many questions, this is my child and I needed to know how to help her. The best thing you can do for your child is be their advocate, they can't talk so you have to do it for them. You have to know what questions to ask, explain every single symptom they are having and always find out what the risks and benefits are for anything they suggest to you. Mommy intuition is a real thing. You see your baby every day, the doctor only sees them for a few minutes/hours, you know when something isn't right. All of Olivia's doctors were shocked that she started eating on her own and gaining weight, as if it just happened randomly. They all sort of gave me the "I told you so speech". No. It did not happen magically, she did not just decide to start eating one day. It was me, I made it happen. I found the help, the tips and tricks from other moms, the weaning plan. They have no clue how hard it was to do it, they just see her gaining weight and that's it. Even if it didn't work and she needed the G tube, I would be okay with it because I would know that I did everything in my power to prevent it but I would ultimately accept it.
Please don't take this post wrong, I know that doctors really can't (or shouldn't) get emotionally attached and maybe it makes them seem cold but it takes a very strong and smart person to be a doctor and there isn't anything I could ever say or do to show how much I truly appreciate them. Just to clarify one more time, I absolutely love and am eternally grateful to all of Olivia's doctors!
"Well, I won't give up on us
Even if the skies get rough
I'm giving you all my love
I'm still looking up
'Cause even the stars they burn
Some even fall to the earth
We've got a lot to learn
God knows we're worth it"
