Giving Up-Part 2

Below, I decided to bullet the items that have caused me much heartache of late and this is perhaps some of the subjects that have prevented me from posting, these are the topics that make my heart skip beats and cause headaches like I have not experienced before, these are the topics that bring me to my knees and question my abilities to be strong. Maybe I am not strong? These are where those who would like to see blogs about happiness and perfection should stop because the one thing I can promise is that the following topics are not happy, are not stress free, are not perfect. These topics…leave me speechless yet with so much to say.

-Insurance…need I say much more? UGH! Okay…well in all reality this area of stress and frustration has gotten better but the battle of fighting insurance seemed like it was never ending. We took all the steps necessary to ensure that Cannon’s surgery was pre-certified/approved by our insurance. This battle started at a well child exam for Cannon shortly after being diagnosed with craniosynostosis. I went to check out and was told I had a balance of $540. I was baffled. I asked for an explanation and was told that our insurance claimed that Cannon had another insurance policy. This was a major untruth. So after clearing that up, I was told by the insurance company that I needed to contact the doctor’s office to have them reprocess the claims. I did this, and was told by the billing department at the doctor’s office that technically that it was the job of the insurance to reprocess the claims. I once more was stuck in the middle just asking for someone to step up to the plate and just process the claim. Supposedly, this was done which was GREAT, but it took at least two months before it finally showed a paid balance. In the meantime, I was busy routinely contacting the insurance company to verify and reverify the information that Cannon’s surgery, helmet and other hospital expenses would be taken care of (because at one point we were told no to it all!?!?). I seriously, spoke with seven different people on different occasions as regular doctor, specialist and hospital bills would come in from pre-surgery visits. As none of these were being taken care of but I was always told that yes, indeed Cannon’s surgery would be covered as well as the helmet expense. I wrote down everyone’s name that I spoke with as well as dates and a general idea of what was said. Surgery came, went and we never received a bill from the hospital and I started to take a breath thinking that everything had worked itself out. But suddenly the bills started coming in with notes at the bottom claiming that this was not a medical necessity (insurance was denying our claims). Same for the helmet and the totals started adding up. I contacted the insurance company and was told that there was no documentation of my conversations occurring previously, but that I could make a grievance and see where that would get us. I wanted to scream. I was then told that everything was going to have to go back to the review board to see if coverage would even be allowed. I was at a loss. Seriously, seriously? So a couple of weeks ago we again received a bill stating that we still owed payment and it showed that it had been reprocessed through our insurance and that it had been once again denied. Again, I was on the phone trying to solve the issue when suddenly things started get confusing yet relief was felt as the service representative informed me that everything had been taken care of except for one bill that was still being judged a necessity or not. Cannon’s pre-op testing. Of all things? But as our conversation was moving along a total amount from the hospital was mentioned and it took me back. I was at such a loss at what total was. I suddenly, became overwhelmed with grief for those parents who have babes who practically live in the hospital for weeks or months and some with awful outcomes and here was our procedure and stay cost more than I could have ever fathomed or expected, but once again, our Heavenly Father was there to show me that he is ever and always present. Even if we do have to cover labs and helmets, the cost of those is peanuts compared to the monstrosity of it all. Then, I remembered a nurse mentioning prior to surgery that if we did not have insurance coverage they had had parents in the past just pay for it all out of pocket. I then felt for them. How? In all though, how confusing and what if I had not been strong enough to fight this insurance battle? I was, but how many don’t?

-Ridging…oh the dreaded ridging. So when we initially received Cannon’s helmet we were told that ridging of the other sutures can and more than likely will occur. This is where the sutures can bulge outward or cause ridges to form as all of the bones are moving and adjusting. Cannon had not really had issues with ridging until five weeks ago. It started small and I mentioned it to our helmet lady but was told to just keep an eye on it and it would resolve itself. Well as much as we had the faith to believe that it would do so, the ridging on Cannon’s coronal suture got worse and worse and bigger and more definitive. I called and much to my heartache had to wait through the weekend before I was able to get a solution. The solution: do not cinch the sides of the helmet tight but to just allow it to fit naturally until our next visit which was in a week. The ridging did calm down and even out by doing this, but then during our visit with the surgeon we were told that we ALWAYS needed to pull the sides tight. If we were struggling with ridging then this informed all of us that the pressure was in the wrong place or that there was too much pressure. Our surgeon made his recommendations and then our helmet lady made hers. Although confusing, I just truly need the ridging to go away. The thought that we endured all we did, and put Cannon through all that we did for the possibility of not having THE most beautiful, well rounded, perfect shaped head is heart breaking. Then the surgeon informed us that it is possible to always have some ridging but more than likely it will correct itself. That is our goal and hope for now!

-Incision Issues…again. The incisions. I know. What? Well the incisions are fully closed but again in the previous visit to KC I had made note that the front incision on the left side was really angry looking (red and not right). We were told to just keep an eye on it and make sure that it did not become infected. WHAT? I thought once a wound closed we were good to go. I…could not, would not be able to handle another infection possibility especially with it already being healed, closed, what more could I have done? So the weeks went by and slowly things again got worse instead of better. I decided I needed to figure out what was wrong. I had noted that it seemed like Cannon’s helmet was not coming down far enough. It was like it was sitting up too high but would not go down all the way. So I thought well…maybe his head is getting taller? Who knows, I am not the expert just the mom and I notice these things. Again, my perfectionism kicking in (aka o.c.d), I notice the most minute details. So I noticed. Then I realized that the hinge on the helmet was very pointed and very sharp and not so kind to the incision of which it daily, constantly rubbed and rubbed and irritated. Again, I was on the phone asking for help and guidance. We covered the hinges with band aids until we received extra pads in the mail. They helped but at our latest adjustments we ensured that the hinges were smoothed down and not as awful as they were. Now I can hope that the scar tissue that seemed to thicken and redden from the constant pressure will resolve. AH!

-Vision Issues…so I think I mentioned this post was not for the light hearted or the positive seeker at this point. Vision…well…so about our last visit with our surgeon at six weeks post-op I had questioned whether they had ever had kiddos who had received the endoscopic treatment for sagittal craniosynostos struggle with vision issues. Prior to surgery, poor Cannon would rub and rub his eyes. We were told that it was potentially allergies and then after surgery we wondered if it could have stemmed from the pressure that his brain was feeling because the rubbing had stopped. We were excited and thought we might never know the answer but we were grateful for the issue to resolve itself. Well, unfortunately though, (again I notice the most minute things) I had noticed that occasionally Cannon’s right eye would drift. If he was looking at something or someone, relaxed or focused his little eye would shift and almost make him look crossed eyed or as if he had a lazy eye. I mentioned it to our surgeon, and was told that no they had not had concerns for Cannon’s eyes with it just being a sagittal fusion but I could not shake that maybe something was wrong. I told Chase but he said that I basically was crazy (not his exact words) and that our sweet Cannon’s eyes were fine. Well then fast forward to a couple of weeks ago and out of the blue Chase mentions that he is worried because he thinks Cannon might be crossed eyed. My heart literally jumped out of my chest because for Chase to first of all worry about anything and secondly mention it especially out loud means something is seriously wrong. I stated that I had mentioned this well before now but had been told basically that I was looking for problems. Fortunately, Cannon’s six month check up was in a few days and another follow up with the surgeon. I mentioned it to both and was hopeful they would not notice. They did some of their own checks and recommended specialists, but neither noted any notable issues. Then, I mentioned it to our helmet lady and without even second guessing she asked if it was the right eye? My heart sank. I know that this is an issue that can be corrected and I know the earlier the better but when you have endured all we have and then were hopeful that nothing prior to during or post-op caused any issue this is not what I want to hear. I have told several people I really really would love to go to a doctor’s appointment and hear “Everything is GREAT!”, but then again, I know that in all reality we too often don’t see the doctor when everything is great we often just go to get help or seek advice, but seriously!?!?!

-Formula…at this point I know that I have talked this subject to death but I am crushed. I know I shouldn’t be and with each passing moment as I suddenly find myself dreading my pump altogether I realize maybe this is best for now. The day I realized that I had to stop pumping over my only true break at school, lunch, I seriously called my mom to cry. I felt like I was failing. I was failing at something that is supposed to come so natural. I was failing at the way God designed a mommy and baby to connect. I know it is not the end of the world, but I think I mentioned I do NOT give up E.V.E.R! I feel like I have given up on pumping and giving Cannon breast milk, but I tried. But the fact that “breast is best” is everywhere as a mom. It was never ever my intention to need formula though. Especially when Cannon had to undergo surgery and get through a winter where he MUST stay healthy in order for everything to be perfect. I still emotionally struggle with this. My physical sense tells me it is okay, a mom is not designed to pump a mom is designed to nurse and it is not the same. No matter who says it is, it is not and my body knows this. I have tried and tried and tried. I still look at other mothers or listen to their stories where they are able to exclusively nurse and nourish their babies and what a great start and foundation they are giving their little ones and I wish that was the same for Cannon and I, but it is not. Reality tells me that it is okay, my mom, and those around me, but in the back of my mind it still crushes me that the one way that I always pictured in my mind of motherhood to provide the best and making it work is not working. The transition to formula for Cannon has been painless, probably not even noticed. But I know the strain it puts on me as a mom to think that I maybe not giving my baby the “best” is painful.

So there it is, all my negativities. I truly truly am a positive person and I truly truly struggled writing all this and putting it out there, but I wanted others to know that it is okay to not have everything be perfect. It is okay to not have the most perfect, hubby, and the most perfect children and the most perfect job, because Heaven truly knows that life is not made to be perfect. People are not made to be perfect. Our pastor recently preached on conflict and something he said so resonated. He said “We seek our spouses to be perfect, we seek our spouse to be our Jesus, not because they are, but because we live with them, they provide for us, they support us, they are there for us and our spirit longs for a Jesus. We have to realize our spouse is NOT Jesus.” Now I know it sounds as though he was just talking about marriage but to me he was talking about it all. He was talking about my relationship with others, Cannon’s doctors, our home remodelers, my coworkers, my children, my friends, my kiddos, my beloved husband and myself. I cannot expect things to be perfect as no one, no one, not even I am perfect. I know it is a crazy revolution but one that has taken me this long to come to. I can’t expect in one night to have my mindset change, I know this, but I really am setting out to realize when life gets me stressed, when people are not doing things perfectly, when my world seems chaotic that is okay because no one, nothing but Jesus is perfect.

So to sign off this what seems like a never ending post I read this quote in my devotion the other day and it was ***perfect***.

Trials are soil in which faith grows.