.....with all of this said, I want to touch base on some hard things that have been going on in my home. Specifically, my baby, Connor. ...He turned 5 months old on the 30th. This was also the 3rd anniversary of my daughter having passed away. ....The 30th was simply a hard day. ....really, the entire week was difficult. .....sometimes I feel like one week is an equivalent to a year between the emotions and facts we face, the difficulties and blessings. ...Our week started with early intervention coming to the house. There was a nurse and another lady who evaluated Connor (and probably us...who knows, it's a state run thing, with a pretty small income based fee). Anyway, I'm excited to see early intervention because they will provide services to help us bring Connor up to speed in life. He has any and all therapies available to him that he possibly needs. .....by the time they left, we were told Connor was equivalent to a 2 to 4 month old baby and that in addition to basic therapies, speech and physical...he'd also had been referred to the Utah School of the deaf and blind. ....Me, being me, pretty much wrote off them saying he was near a 2 to 4 month old. I considered that complete hog-wash. He's been in and out of hospitals more than some people ever see a hospital and still smiles, flirts, and has an attentive little mind behind those baby blue eyes. He also has weaker muscles but that's only because he's been physically delayed due to some fine tuning he's needed since he was born. He's going to be just fine there. His speech is obviously going to take a bit longer. He's been born with a cleft palate, had a prosthesis screwed to the roof of his mouth, has "tongue tie" and essentially doesn't seem to grasp the concept of sucking....it's all good. He was made different and yet, you can look at him and see he's just special. Not in a my kid has special needs way but in a this one is going to do something amazing. ........the referral to the school for the deaf and blind through me for a loop. I was beyond upset. We had thought there may be a problem but it was one of those ideas that hit you only here and there. One minute he seemed like he could hear us, the next minute we were certain he was all but deaf. .....well, in a way that referral had us thinking he was clearly near deaf. ....I was immediately on the phone with our ENT's office to either talk to Connor's doctor, get some facts, or have an appointment pronto. Better yet, all three of those items were wanted, if not demanded. ....after some time of discussion, we got an appointment for the end of the week and had a call back from a nurse who'd spoke with our ENT. We were told not to worry that it looked like one ear may have some moderate to severe hearing loss and that the doctor believed someone may have acted too soon with the referral. .....so, like the ridiculous worry-wart I can be, I delved into researching all things hearing loss. I worked myself up with worry for Connor having a world without hearing and then embraced the non hearing world. ...I did this with reckless abandon. I diagnosed him practically myself. All week, we made noises in one ear and then the next. One minute we were sure he could hear us, the next minute he'd just keep smiling and never turn his head towards a sound. ....his appointment for another hearing test and later appointment for the ENT finally came. Connor didn't need to be asleep for the basic tests but he did need to be somewhat calm.........and of course, he screamed his head off. He was inconsolable and clearly didn't want anyone or anything in or near his ear. One test came out ok for one ear and the next ear started looking pretty bad but couldn't be completed because the ear bud wouldn't stay put. ....our ENT appointment got us nowhere but we did luck out and someone had cancelled their ABR test for that afternoon so we were slipped into that spot. .......honestly, no idea what the ABR stands for, haven't had time or interest since then to look it up. .......but, we headed for the ABR test. Connor needed to sleep for this but after a ride for over an hour just to get to the office in Riverton, UT...he wasn't ready to nap again. The audiologist gave us a two hour window to try to get Connor to nap, I gave him his first bottle in days, the room was darkened....he smiled and cooed the entire time. He took a poo...laughed...and seemed ok that little thingies were stuck around his head and ear in hopes he'd just sleep so the test could quickly be conducted. .....not going to happen. So, the audiologist decided since he was happy that she'd try to get a basic test done. He failed with one ear the first time but she thought she'd try a smaller ear bud and run the test again. That time, he passed. ..........I felt frustrated to say the least. ......So, there seems to have been contradictions with each and every test he's had....what are the recommendations now?! ........this audiologist very calmly said relax. And I did. After a week of stressing, I really looked at Connor. He was so happy. He had a tube out of his clothes, sort of bags under his young eyes, still had things attached to his head and he was smiling as if he created the day. ...We had a talk about whatever the reason, he passed the simple test that moment. He had entirely more serious issues than hearing right now. At 5 months, there is only so much intervention that can happen if he would be found out to be deaf. He also has tubes in his ears so clearly he has fluid issues that were an automatic for a child born with Pierre Robin. Craniofacial anomalies are going to affect the ears. ......Connor was fine. We had bigger fish to fry and would wait a few months and test him under sedation. ........somehow, the lights came on for me. Connor was fine. We'll learn what we can from the school for the deaf and blind and let all of us learn a little sign language and have fun. If his hearing turns out great...then we'll have learned something. and if his future brings hearing aids and/or cochlear implants, that'll be just fine too. ........seriously, I can not stress how relieved I felt leaving that office. You had to laugh because of course Connor did not go to sleep the minute we left that office but smiled and looked around the entire ride home. He was oblivious to any worries. Me worrying for an entire week did not change him and I still didn't know anything. If I would have learned anything, he still would have been smiling and looking around and not caring about anything. I tell ya, it was a profound moment. ......part of me really saw Connor and how amazing he is. I felt like an idiot for having worried so much.
.....now, let me rewind our week just a bit for some g tube worries. Tuesday night around 10, I woke up to hearing Connor sort of choking. He was puking like no tomorrow. His face was red and afraid. He'd puke, stop, calm a minute and then start back up. His little body was not handling the amount of formula he was getting on his nightly continuous feed (40ml an hour, or 1.3 ounces). He was soaked from head to toe. His crib was a mess. I was a mess. His carpet was soaked and we were both scared. .....I couldn't call his pediatrician or his dad (work). For once he calmed down, I knew it wasn't an immediate emergency. I just needed to know what needed to be done until his pediatrician appointment two days later. I ended up calling Primary Children's hospital and asked to speak to the on-call surgeon. I was instructed to give him half feeds and then make a visit to his doctor the next morning. ....Within the hour, he was cleaned up, back to sleep and on a feed of 20ml an hour. He woke up again having this puking and at that point I simply turned off his machine. ...I gave him some pedialyte the next morning and headed out to the instacare clinic next to his pediatrician's office. Long story short, this very kind doctor was not a pediatrician and had no clue how to handle Connor's care. I let him know that in short, I just needed Connor to be ok until we made it to his pediatrician's appointment the next day. .......I was initially recommended to stay at the instacare office and give Connor a bolous feed (100ml over an hour) of pedialyte (so they wanted the same normal feeding schedule but instead of formula, the pedialyte) and we'd just wait and see what happened. ......sooooo, as I'm sitting in the office and running the pedialyte through the pump, I decide this is dumb. Seriously, my 5 months as Connor's mom decides I'm smarter than the experienced (yet not a pediatrician!) doctor. ....the doctor and I have us a little conversation and I let him know that if Connor starts refluxing this much pedialyte he may aspirate this thin liquid. So, I decide to just reduce his formula by half and slowly try to work Connor up to his normal feeding schedule. The doctor agrees and I go home. ......that night, I once again slowed down Connor's continuous feed but give him formula again. .....When we finally have our pediatrician appointment, Connor's weight is at 13lbs and 13ounces. Not a significant gain but he's been having a rough few days so I'm not surprised. ....before Connor's pediatrician arrives I set out all of his needs for when I change his dressings around his g tube. His pediatrician (now known as Ped. S on this here post) comes in smiles and says she heard he had a rough few days and to please make sure next time to insist on seeing a pediatrician at the office whether she is there or not. She lets me know he's flagged as needing extra attention and that he will most definitely be fit in. .......well, she smiles at my display of soap, qtips, pre-cut tape. I let her know I want her to watch me change his dressing and see if I'm cleaning his stoma the way I should. We discuss his issues and she reminds me to call her. Not text but to call until I get her..at home. She's great. Anyway, we go over his hearing and she let's me know there is a cool side to hearing loss in that aids and implants are spectacular and that signing at a young age is proven to be a good step in enhancing early education in babies and toddlers. We discuss his nutritional needs and she says I'm doing a great job and to continue doing the slow ease back into his normal diet. We discuss his bowel moves which have become straight up diarrhea and I'm told to supplement some pedialyte here and there. ....she lets me know before I leave that she'll be calling daily and if not, that I need to call her. ...........well, I leave her office content that Connor is getting the care he needs from all of his doctors and feeling confident that I'm doing all I can for him. This was Thursday. ....the ENT, hearing tests and moment of realizing I need to chill with the worrying came the next day. ..........
........Now, this is where I'm going to let you know I meant what I said when I posted on facebook that I am truly Connor's medical team leader. Yes, I do as I'm told by the doctors with everything in his care. I've done his additional feeding therapies, I've turned screws to move his jaw forward, I've cared for distractors behind his ears, used oil for his various scars, learned to use a feeding pump, learned how to best feed with various bottles and how to thicken his formula to just the right consistency....I keep notes of everything. If I did half as good in school, I may very well be a doctor myself. And if this sounds like I'm pumping myself up, you are correct. .....I am not certain of many things and I question my destiny just as much as anyone else but I know I was meant to be Connor's mama. I was meant to have Tristan, Ireland, and Sawyer too. I don't know why Ireland was taken from me but I know I was her mother and loved her and was the only mama in this world meant for her. ........my faith has wavered at times but I have a true belief not so much that things happen for a reason or are predestined but I have a conviction and belief that what is happening at any given moment is what is supposed to be. We can choose this or that but once the decision is made, or the moment happens, it's done and time keeps moving forward despite any of your preconceived notions or beliefs. ..........anywho, beyond my writing things down and forwarding the information to our doctors and getting their feedback, I am essentially calling the shots for Connor. I realized that between the instacare visit and the day after learning absolutely nothing from any of the hearing tests. .........now, I'm going to put a sort of disclaimer in here before I keep writing. I may have already ticked off a person or two mentioning weaknesses they identified with but I may tick even more people off when I mention what I've been doing lately and my personal beliefs on what Connor needs. Trust me, Mikey and I have even had some major arguments when it comes to Connor and usually it's because I feel like I'm the one that knows best. I've had to swallow some pride more than once realizing he is his father and also looking out for him. ....and let me tell you, it takes a strong man to be married to a strong woman. My peeps (the best ones) know this and have good hubbies....and those beautiful men are rewarded with smart women that also know how best to love their man.
now with this said....I present to you my weekend, our weekend. ...I wasn't kidding at all when I said something profound happened when I was looking at Connor in that audiologist's office. He was smiling and seemed like he could give a rat's ass why he was there. .........that night I hooked up Connor to his feeding machine and gave him 30ml an hour for the night of his regular formula. I had been working up just a little at a time to make sure his stomach could handle the night time feeds. ...........well, after some facebook posting of my embarrassment over ridiculously worrying all week, I got alot of encouraging feedback. My friends that are in the same boat have either been in this position and let me know I was ok and more times than I can count, my friends that just care and/or are mothers themselves reminded we all worry about our kiddos. ....I started really thinking about how Connor is doing. Yes, he's happy and certainly must know he's loved. Connor is also sickly though. He is 5 months old now and his weight is beyond low. At 13lbs and 13 ounces he sits barely at the 4% line on the standard baby weight charts. Yes, I've mentioned screw the charts but hey, this isn't cool. He has a tube hanging out of his stomach and a sock currently balled up beneath the tube to keep the tube perpendicular to his tummy. He is pale and has bags under his eyes. He can stand but he's not strong like my other boys were. I say not to compare but hell, I am human and it's what we do (our actions from that point on is where we define ourselves). I have a notebook where I write down times of formula, amounts he's had, meds and times, poop, and anything significant going on moment to moment. I have stared at this thing, had it copied by his doctors and therapist. I truly feel I know what I'm doing with the information I've been given, I've learned from others. I do not take anything lightly when it comes to his care.
.........there are two people that have danced around in my head lately. A friend that visited us when we initially found out Connor simply had a cleft palate and then a loved one that I believe suffers from oral aversion and it shows in her weight and her health (and she knows I love her so know right here, I'm imagining she knows who she is and that she needs to read this knowing that fact). .....anywho, we have a friend born with a cleft palate. He's perfectly good looking, smart, friendly....we had no idea and why would we ever need to know that he was born with an imperfection. Well, he spoke with my husband and calmed us in so many ways. He admitted there were some tough years with speech and that his mother used to cut holes in the nipples of bottles just so he'd get his proper nutrition. He also had dental work but really, tons of people need that. .....and as I said before, we love someone who's not so healthy. We believe she suffers from oral aversion. She may very well have additional issues but in our heart of hearts, we believe she started with a belief in herself that she needed to lose weight and she took that belief too far. By the time she realized she had a problem, the problems compounded. She is weak to the point of needing a walker, is thinner than thin and chokes easily on a coffee, not to mention any food she's scattering around on her plate. .......this one is hard to write because we love her so much. With that, like I said these two people are in my head CONSTANTLY. In addition to them, Ireland has been ever present and the sadness of losing her was reawakened this week on what would have been the last day we had with her 3 years ago. ..............well, my sleep has been horrible this week. Connor has had a horrible week. ..........I gave him nearly 4 ounces at that appointment in the audiologist's office hoping like crazy he'd go to sleep so we could do the hearing test. I went on and on about this was the most I'd given him in a bottle but he loves the bottle, works his little chin so hard he wears himself out. I let her know I wouldn't be giving him the bottle if I wasn't confident he'd be fine. I worried more about him just spitting up all over me and maybe having one or two more 'episodes' than normal. The cons and pros were weighed and I felt he needed that bottle....so he'd sleep for the test. ........funny thing though. He didn't spit up. He didn't sleep. He just seemed freaking happy.
....move on forward past me realizing I need to stop worrying, I realize he's happy and that's good enough right now. ........I put him to bed and decide he can handle 40ml an hour of formula and be back to his normal continuous feed for the night. ..........nope, he wakes up around 2am puking and soaking everything. I decide he needs the pedialyte and to take him back to the 20ml an hour. We all go back to bed secure in knowing the apnea monitor will wake us up if there is a problem. .....now it's 4am and the damn apnea monitor is buzzing like a fire alarm. Mikey and I just about knock each other over running to Connor. ......apparently, he's fine. Somehow, his monitor wasn't plugged in and lost battery power. .....Can we say dang near had heart attacks????? ......about 5 am or so, Connor wakes up with another little puking session so we just stop all the machines and put him in our bed. ........my mind is all over the place. .............I make a decision. ..........Connor has gotten so fussy lately and I decide he is hungry. We're all going crazy trying to keep him on his feeding schedule, worried if he's getting what he needs, worried about everything. We worry most about him getting a major case of oral aversion and being tube fed if not forever, much longer than anyone would want. ..........I keep thinking that oral aversion is almost a natural thing for a kid with reflux, aspiration and tube feeds. Between constantly worrying if they're getting they're nutritional needs met, they're also not getting anything in their mouth or down the pipe (esophagus). In my non medical and just mama mind, I think none of this is natural. His esophagus is only getting even slightly wet from the moments he's refluxing and that's freaking acid, right? And we're pretty certain we're controlling his aspiration by thickening his formula when I give him bottles. Surely if he were aspirating right now, he'd sound like he has the worst pneumonia ever, right? And yes, he's still really mucousy but wouldn't thickened formula sort of make the mucus worse? ......I imagine people with oral aversion that don't want food in their mouth, that don't want or can't handle the food or drinks. I sincerely think the more you keep the food and drink away from your mouth and the natural act of swallowing, and the food or drink not going down your esophagus that it's only natural that the act would begin to hurt...your body would naturally avoid any of it because it's the body's way of avoiding hurt. ........I truly don't know. It's simply what a mom in my situation thinks. ........well, I make a command decision that Connor needs to freaking have some bottles. Devil be damned. ........he starts his day with his meds and I truly say screw the schedule. If he were perfectly fine, aka normal, we'd give him a bottle when he cries. Soooooo, I get his formula all thickened up and give him his bottle with the cool pigeon nipple that he squeezes and gets formula at his own pace. As always, he's excited but tires quickly having only had an ounce. .....once again, my mind goes where it goes and I decide he needs his old bottle. The one I got from the NICU where I'm controlling what he gets. I make some more thickened formula, look at the clock, test it out to see how fast or slow I can control it, and give him a bottle. He does three ounces. He doesn't choke. He keeps it down. It took about 40 minutes. ....three hours later, I do it again. He does 4 ounces in about 40 minutes...good pace. I write it down in the notebook and start feeling good about this. .......he spits up just a little through his nose and mouth. Babies spit up. .............I do it again and again and ball my freaking eyes out. I call my mom. Text my brother. Mikey knows what's going on and is happy too. ......I don't tell the world but I call Ped. S to see what she thinks. She says I know him best and she's excited too. We decide I'll bring him in this week to her office so she can listen to his lungs to make sure they're indeed clear. ........see, I'm not completely shooting from the hip. .............anywho, I've done this all weekend and he's doing great. He wants to eat constantly and we've kept him on his feeds at night but only at a half dosage. Part of me is ready to yank the g tube out but I know this is a beginning and we need to be cautious. But let me tell you, I know this is right. He looks good! There is a difference in just two days! His cheeks are flushed, he already seems stronger. .......................this may not work for everyone, I may even be prematurely excited though I don't think so................I just know I am Connor's mama for a reason. ......he will be well in this world and that is a fact.