McCoy's Journey: 2 Months DONE

In the last update, we had only completed 3 fills. As of today, McCoy has not only had 7 fills, but has pushed through 2 whole months of this process, and we all couldn't be more happy to have that amount of time done and behind us. Could this be a half way mark? Who knows...we've had conflicting information from Dr. Burns verses the nurses, but happiest, best case scenario says we're half way done, and if that turns out to be true, wow! I can't even put into words how amazing that would be. But, if that's not to be the case, we could still be looking at another 3-4 months.

Dallas had to travel to Mexico this past week, leaving on Wednesday morning and not returning until tomorrow (Monday). Sadly, for many reasons we were not able to align the stars and have McCoy's fill appointment before Dallas left, which meant I would have to take McCoy alone. Before we started this whole process, I thought at some point I would for sure be taking him by myself, as I didn't think Dallas would feel comfortable leaving work every week for a "lunch break" to meet me for the fills. However, after the first fill and few subsequent ones after, I quickly realized I DID NOT want to do it alone, dare I say I COULD not do it alone, and not just for my own weak self, but because I truly feel that McCoy is more comfortable and better distracted when both of us are there. And ultimately, everything in this situation needs to be all about him. I want him to have the best experience possible each week, and amazingly, blessedly, gratefully, up to this point Dallas has been able to be at every fill. So, needless to say, I felt a lot of fear and anxiety, even sadness, as Wednesday approached. Dallas had to leave in the morning to catch his flight, and later that afternoon was McCoy's appointment. I was double bummed because the timing of the appointment couldn't have been worse - 2:30pm, smack dab in the middle of his normal afternoon nap. Before Dallas left, he was able to give both McCoy and I a blessing, which helped me a lot. I noticed in the blessing he didn't say anything about the fill going perfectly, or McCoy handling it well. It was more along the lines of blessing us with strength and happiness through it all. Even still, I felt peace and clung to the gratitude I felt from the many prayers that I know are so continuously offered on our behalf.

A tender mercy: McCoy usually doesn't wake in the mornings until a little after 7am. This means his naps are normally somewhere around 10am and 2pm. I had been stressing about how I could switch up his schedule so that he would be most happy and relaxed during his appointment. I vacillated - do I nap him twice before his appointment, and try to schedule it so he wakes right before we need to leave? But then he won't be able to fall asleep on the ride home, and he'll be uncomfortable and probably cry the whole time. So do I keep him awake way longer than normal in the morning and only nap him once before going? But then what if he's overly tired so he doesn't nap well, and then he's even more uncomfortable and unsettled for his appointment?! I couldn't decide. Well, strangely enough, Tuesday night McCoy slept very well, and Wednesday morning at 6:30am he decided to wake up and he did not want to go back to sleep! I was so tired and at first wished he would fall back asleep, but as I laid next to him reading to him in bed, I realized his out-of-the-norm wake time was actually a blessing in disguise. I knew it was thanks to Heavenly Father, and that it was the answer I'd been seeking as to how to handle his nap schedules for optimal timing with his fill. I could nap him at 8:30am and he'd be tired enough, and then because his first nap would be so early, I could nap him again right before needing to leave, around 12:30pm. Then, because we wouldn't be done with his fill until around 3 or 3:30, he could even fall asleep on the way home if he wanted to because he could be tired enough then as well. I've noticed little blessings like this from Heavenly Father in the past in regards to McCoys' needs, and I was so grateful yet again for a seemingly simple thing from Him again. It worked out great, and I was able to nap him as I just mentioned.

During McCoy's second nap right before the appointment, I was going through my usual task of preparing everything for when he would wake, and all the things I'd need to prep him for his fill. I found myself pitying my situation, wondering when such out-of-the-ordinary things became a normal, regular thing for me, and wishing that everything I have to go through weekly for his fills wasn't part of my frequent routine.

This is what "normal" looks like for me every week now - tagaderms and lidocaine, saran wrap, tylenol and scar recovery gel, coconut oil and hydrocortisone cream. All set up within an arms reach of where I'll be prepping McCoy. It's quite the ritual.

Have to make sure I have the proper clothes picked out - will this shirt fit this week, or will it be too small after the fill? Should I put pants on him or will that be uncomfortable because of his bottom expander? Is the iPad fully charged so McCoy is distracted while I dance on my head behind him trying to get all his ports sufficiently numbed, and work up a sweat trying to get the tylenol down him?

Do I have every possible distraction mechanism in my bag? Bubbles - check. Favorite beanie boo - check. Back scratcher (yes, I'm that parent who has to bring the shameful "non-toys" with their child because sometimes your kid just likes the oddest things) - check. Books, rattle, teethers, spoons, iPad for music videos, colored water bottles, etc. etc. - check.

I'll skip most the details about that fill I went to myself, but one thing I want to remember is the difference I felt in the overall experience compared to the previous week. The difference between the previous week and this week was that this week our names were on the temple prayer roll, whereas the week before the temple our names were on was shut down, due to the flooding. Mom and Dad are so wonderful for keeping our names on the Houston temple prayer roll, and when either Dallas or I go to the Dallas temple, we usually stick McCoy's name on there. Well, not only was the Houston temple shut down, but the Dallas temple closed for 2 weeks. Interesting that the week when temple patrons were not praying for us, our fill was one of the worst we'd had to date. And then, even though I was alone, the week the temples were up and running again and others were praying again on our behalf, I could literally feel the difference. Don't get me wrong, doing it alone was very difficult and certainly not ideal in any way, and I cringe thinking of how horrible one of the nurses was at comforting/distracting McCoy, but at least we had been prayed for, and I could feel the literal power of those prayers.

One last tender mercy that just hit me yesterday is regarding Dallas having worked at Bard, and the connection that has with McCoy's port situation. 2 of McCoy's ports have flipped incorrectly, and although we were able to get 1 flipped back and laying right, the other continuously flips the wrong way, which poses problems for fills. We also have to be religious about flipping it so it lays the right way, otherwise scar tissue/surrounding tissue could grow and/or latch onto the port and cause it be stuck the wrong way. This would mean we wouldn't be able to fill that expander that the port leads to. It could also put us in the emergency room with McCoy needing surgery. So, it hit me yesterday - C.R. Bard is a medical manufacturing company, not only that, but they manufacture and produce medical PORTS of all things! Dallas had to learn and gain and understanding about all the different products Bard made when he worked for them. Take this in combination with the fact that a flipping port is apparently a rare occurrence, and yet out of everyone it could happen to, it happened to McCoy, whose dad has an intricate knowledge of ports and how they work, and because of this, was able to understand exactly how the port should feel under the skin, enabling him to be more qualified/comfortable at flipping his port (when even McCoy's nurses couldn't!) regularly. How crazy is that? And to think that Dallas started working at Bard over 3 years ago....it testifies to me just how involved Heavenly Father is in our lives, and how far in advance he's laying the "groundwork" for future experiences in our lives. He is always watching out for us, and preparing us for things yet to come, even years down the road.

With 2 months done and behind us, I of course want to put some progress pictures of the expansion on here. So if you're reading this and care not to look, please don't scroll down. And just a reminder - please don't share these images, as they are personal to us.

On McCoy's 4th fill, right when we walked into the office, he laid his head down on my shoulder and snuggled into me. He knew what was coming. He stayed that way the whole time until they took us back to our room. My poor little love. Next time, I wanted to switch things up and have Dallas hold him as we walked in, and see if he reacted the same way. Sure enough, he laid his head down immediately on Dallas and stayed that way. He's now even starting to recognize the outside of the building (the water fountain is unforgettable for him), and as we walk into the elevator on our way up to the office, I sense now that he's starting to recognize even that.

This is where we left off...

Because this was the first time his port was flipped incorrectly, and we didn't know what to do, we were unable to fill his side expander. Very depressing.

As I mentioned above, McCoy knows what's coming each week, sooner and sooner. He knows the moment we walk into the office for sure.  He even recognizes the nurses, and no longer smiles at them but rather nestles in and looks away.  This fill went good and bad. I was able to distract McCoy very well for the first three picks, he only cried out when the needle went in but then totally calmed back down. He did cry out when we had to flip the port, as it was incorrectly laying. We ended up having to flip it twice because it flipped back so quickly before the nurse was able to inject in it. We continue flipping it basically every day & hope it doesn't ever get stuck. The end of the fill was very difficult. They had to prick him over and over and over. The needle just wasn't going in the exact spot in the port that it needed to. I think Dallas sheltered me from just how much they're actually re-sticking him with the needle. If you think about it, if they have to re-stick him 2-3 times, with 6 ports that equals anywhere from 12 to 24 pricks. Anyway, so the end was very sad and it was hurting my heart, which lately hasn't been an issue as I have felt comforted from prayers through the painful times when McCoy is clearly in a lot of pain. But this fill was harder for me for some reason. Yet again though, as soon as we were done, McCoy settled down and was happy to be out the door.

Today we asked the nurses how much longer they felt we had. They seem to think only about 2 more months of fills, not 4.5 like Dr. Burns said. They said they don't want to "underhand" Dr. Burns, that's not what they're trying to do - but that they are of the opinion that because they're the ones actually seeing the patients every week and doing the actual fills, they have a better idea of the timing. They did say though that they don't want to get my hopes up, so they rephrased and said "2 months more, minimum." Apparently the longest they've filled someone's expanders is less than 4 months. Interesting. Hard to really know. Dallas and I wonder though if when they say that timeframe, perhaps they are talking purely from the standpoint of how much more fluid they can get in the expanders, and not really talking about getting enough skin to cover the entire nevus and remove it in one shot. Everyone reiterates that the more skin the better. Even if you're only 1 tiny millimeter short of skin, it can make the joining incision very very tight, which increases the risk of that incision busting open after removal, which has its own set of problems associated with that happening.

Thoughts I recorded April 27th: "Very hard day today. It's odd, I feel bad complaining and sharing how difficult and crappy it was, because I could definitely feel strength and a "surrounded" feeling from all the prayers people have given on our behalf. But all the same, it WAS a hard day, and the fill was awful :( I am grateful it's behind us and that I hopefully never have to do that again. It's crazy how much emotional strength/support I feel just from having Dallas there. And him coming home and being here with me at night. I miss him...and although I'm lonely which makes me sad, it's like I want to be alone at the same time. ANYway, Dallas gave McCoy and I blessings before his flight this morn. That was nice. We were able to fill all expanders, although the last one (the bottom - biggest - one) we didn't get as much fluid in cuz the needle kept coming out. That also happened on 1 other expander. The port was also laying incorrectly which I had to flip, and I do not like doing that! Ugh. I held McCoy while one nurse tried distracting McCoy...I dont even want to talk about that right now. Too tired. Anyway, Ly (the nurse who does the actual fill) totaled the amount of ml in all his expanders for me so I can try and calculate his weight at McCoy's next pediatrician appt. He has 1,370 ml (same as ccs apparently) total. After a bit of googling, it appears that equals approx 3lbs. McCoy's skin has a lot of excema and dry patches and it seems to spreading in small spots around all his expanders. I am moisturizing and doing more hydrocortisone. Praying his skin moistens up. Today was by far the roughest "bounce back" he's had - super fussy and inconsolable, not acting like himself, etc. But he's in bed and I'm finally relaxing and clearing my mind. Going to read a good book after an ensign article :) I can't thank everyone enough for their thoughts & prayers, they always help."

Ever since McCoy was born, people have always so kindly commented on how cute and adorable he is, and what a sweet baby he is. It's nice of people to take the time to say those things. Dallas and I have noticed in the past couple of weeks that while people still say those things on the very rare occasions we're around others, people are definitely starting to notice McCoy's bubbles. There is no hiding them now, and it's hard to put into words what it feels like when you know someone is trying to discreetly sneak a glance at your child and try to figure out what is making them look different...it definitely puts a new perspective on things we both hadn't given much thought to in the past I'm sure. Of course to us though, he is still perfect and handsome and everything wonderful! :) We sure love our sweet little guy.