Wednesday, February 6, 2030

New To Step By Step? Start HERE!

Welcome! It is my hope that Step by Step Cleft will educate, inspire, and uplift all who come across it! This blog is meant to be read from the beginning, or oldest post to the most recent post. So for you newbies, START HERE by clicking through the posts one at a time in order. And please, leave a comment! Or just vote! (to the right...:) I love knowing I'm not just sending this out into cyberspace, and a real person ACTUALLY might read this blog!;)
Post One
"I think this baby has a cleft lip..."

Post Two
"Honey, I'm home..."

Post Three
"Being "okay" with it."

Post Four

Post Five
"Finding a Doctor"

Post Six
"Birth Day"

Post Seven

Post Eight
"They say..." Surgery One

Post Nine
"Honeycuffs and Miracle Blankets"

Post Ten

Post Eleven
"Taping and Ear Tubes"

Post Twelve
"I'd like one Face-sect-damee, Please!"

Post Thirteen
"Rykers Ring"

Post Fourteen
"Save the Best For Last"

For all my old friends, check out the latest post BELOW! But make sure you haven't missed one while you were away!

And PLEASE, PLEASE, PLEASE, if you come across a blog, educational site, cleft product, or anything else that you love...Share! Tell me in a comment and I will post a link to all these little web treasures! Or if you have a question, feel free to ask! I will do my best to answer! Also, keep in mind that because EVERY cleft is different, there are MANY different methods for repair, and MANY different oppinions about which is best. This is just one way. One method, and one doctors preferred plan of attack for our unique cleft. You and your journey will vary, but one thing we can all share is a similar emotional journey...and the fact that our little monkeys came into this world with EXTRA big smiles!;)

Sunday, November 18, 2012

Save the Best for Last

After Rykers lip and nose repair, we had 3 more surgeries, totaling 5, before he was a one and a 1/2. One easy one for ear tubes, and two rough ones to repair his soft palate. Since the day he was born, it seemed like we were either recovering from a surgery, or gearing up for one . I kept holding on to the idea that after his second soft palate repair, when he was a year and a half, we would have a 2 year break. Ryker wouldn't need another surgery until he was 4! I seriously felt like we were in pure survival mode, but I knew it would be coming to an end. At least for a while, and I clung to that. When Ryker turned one, we not only celebrated his birthday, we celebrated a tremendous year survived. Ryker had been a champion through it all.

Rykers One Year Old Pictures- Unedited of course:)

Don't you just want to squish him!?

When Ryker was 18 Months old he had surgery for the completion of his soft palate repair.We would be staying overnight, and due to my now expertise at hospital stays, I mentally and physically prepared. As ready as I was, I never could have guessed the rollercoster we were about to get on.

We had never had a better experience with a surgery as we did that time. Not only did we not get bumped for surgery time, prolonging a very empty toddler tummy, but they actually called and had us come EARLY! Nice! Check in was a breeze, and surgery was a short hour. In recovery, Ryker just slept. He has NEVER just SLEPT. Normally he is flailing about, pulling out IV's, screaming, causing major stress and worry on himself and us. Totally understandable, but still. So when he just SLEPT in my arms, I was in HEAVEN!
They took us to our room. A PRIVATE room! Sweet! And Ryker continued to sleep. Having been all prepared for the worst, we were almost board with the extremely calm situation. How nice! Later in the night when Ryker did start to get fussy, they offered to bring in a FULL size hospital bed so he could sleep in my arms while I slept. WHAT?! You can do that?! Why the hell had no one offered this luxury to me before?

Note: Will DEMAND a full size bed from now on, and if you are going through a similar adventure, Demand that you DEMAND one from the very beginning! It made everything WAY easier and doable.

We were riding high on a rather not so sucky hospital experience until we got a call from our neighbor first thing the following morning. She had gone to let our dogs out while we were at the hospital, when she found Max, our 10 year old Boxer, lying on the floor in bad shape. She had no idea what was wrong, but it was clear he was dying. We were an hour away from home and still did not have the "all clear" to be discharged from the hospital with Ryker.
It was awful. Max was the dog we had had our whole marriage. He was our first "child," and the sweetest most loving dog ever. Knowing he was dying all alone without us, was killing me. As soon as we could we rushed home only to pass Ryker off to my Mom, pick Max up from where he lay in extremely bad shape, and rush to the animal Hospital.
He died with us by his side within minutes of getting to the vet.
Apparently he had a tumor somewhere inside that had ruptured. Sadly, very common for boxers, there was nothing we could have done. I know he waited for us.Waited for us to say goodby. This was such a major blow on a day where we were already running on empty emotionally. Honestly, it was a rough day, but we  survived it.
As for Rykers recovery, it was the easiest and fastest he had ever had, and we were able to quickly return back to normal. God threw us a bone on this one. Pun intended.

I know that story was kind of a buzz kill, but as awful as the timing was, it still was the beginning of a long awaited, much deserved break. We emerged from our fog of surgeries and Doctors, and ALL the fun tid-bits that come with them, and entered a new normal. And I cherish that "normal." I felt like I could breath again. We played and worked and played some more, and Ryker no longer sneezed concerningly large amounts of food and snot out of his nose. That alone was simply fantastic! His repair had officially moved into the "mostly done" section. Yay! We have at least 2 more surgeries to go. One when he is 4 for his hard palate repair, and one when he is 6 for his gum line repair. After having 5 in just over a year, we can totally do two in a 5 year stretch! Fagetta 'bout it!

Ryker at two years old with the family who loves him. And yes, I am TOTALLY showing off, but I AM his Mother and he IS absolutely darling!

(Photos untouched and totally real...told you our surgeon rocks!)

Sunday, April 22, 2012

Rykers Ring

We started a tradition in our family when I had my first baby Chloe. I have babies, I get jewelery. I think this should be a law or something for all women. I wanted to have something to pass on to my children one day, that until that time, I could enjoy. With Chloe I received amazing diamond earrings in the hospital, diamonds being her birthstone. I almost never take them out. I love having a little memento of her and the day she came into our lives. With Ryker I wanted something to represent his uniqueness and our journey with him. I looked and looked and came across this ring. It was perfect. I know its SUPER cheesy, but I love how the ring isn't "complete" yet it is absolutely stunning. Just like Ryker, with his cleft and all, he's beautiful. This ring is super precious to me and I smile every time I look at it. The stone is a blue Sapphire, his birthstone. This light doesn't do it justice, but the stone is dark and reflects bright blue light. It's lovely and so incredibly special to me, just like my little man Ryker.

Thanks to my hubby for indulging me in my silly sentimental rampages.

Monday, January 9, 2012

I'd like one Face-sect-damee, Please!

This was the post I did for my family blog about a week post surgery. Again, I didn't give them all the nitty gritty details you kids are going to get, but its a good starting place. Following the post is the good stuff!

Two Weeks before Rykers surgery we started taping his face to prep the skin. It kind of gave us a seek peek at what the final results might be. He really didn't like it, and it was a major pain, but we did what we were told, and hopefully it paid off.
The morning of the surgery we had planned to be the first ones in surgery. Meaning that we would need to stop feeding Ryker at 3AM, get up at 4AM, leave by 5AM, check in by 6AM, and be in surgery by 7AM. Well, the best laid plans... This is what actually happened. I was a nut job the whole day before, so when I got a call informing me that Ryker had been bumped to the second surgery meaning the ear/nose and thought Doctor that was supposed to put Rykers ear tubes in at the same time as his other surgery would no longer be able to, due to the time shift, I was an even bigger mess. Then first thing in the morning we got another call. We were bumped again. They predicted his surgery time would now be 3 PM. 8 hours later then planed, which is a really big deal when your 3months old and STARVING! We finally got the call and we headed for the hospital.
We got all checked in and Ryker was prepped. He had this darling onesie on from my Grandma. It had police cars and ambulances and hospitals. Perfect attire for the event! We changed him into the tiniest hospital gown I have ever seen, and we were ready!

I was a wreak. I hadn't really slept. I got up super early, and I was about to surrender my little man. It was so extremely bitter sweet. Not the best Kodak moment of my life. This was the last I saw Ryker until a torturous 2 hours later.
Finally!!! He was done and back safe in my arms. The Surgery went perfect! The nurse wanted me to put him in his bed to move him to his recovery room. I refused. She didn't like me so much after that. Too bad.

Ryker did as good as you can expect anyone to do after being hit by a Mac truck. Me and Allan on the other hand, did as good as any parent watching there child be hit by a Mac truck, would do

Ta Da! The results.

Okay, so let me explain the following photograph. At this point Ryker had been cyring in a painfully horse voice A LOT, I had already broken down 3 times, had to leave the room when they were working on him twice, and I had just found out that the IV in Rykers foot missed the vein. So all the fluid as well as all his pain medication was being pushed into his arm tissue, and not in his vein. For THREE hours. Because of this he was beyond miserable, and we had no clue until we unwrapped him and found his arm disturbingly swollen. I freak out. I mean, FREAKED OUT. Another potential nurse friendship destroyed. My two sisters were there, including my nurse sister who assured me it would be okay, and unfortunately it happens all the time. If it weren't for them, I may now have a charge of assault on my record. So this picture was taken after I lost it, bawled my eyes out, left the room and came back after I got a hold of myself. It had been a VERY long day. So, weirdly, I kind of like this picture. It shows me at a time of extreme anger, worry, exhaustion, frustration, and the utmost real emotion of a mother with protection and love for my precious child. I would do anything for him. It was an unbelievably emotionally painful day. And this is what I looked like that day.
Then my sister reminded me about all the good parts of the day. Ryker had his face completely fixed. How awesome is that!? What an amazing blessing. I am so incredibly grateful that this is our challenge. I wouldn't trade it. Its ours. And yes its hard, but we can do hard things.

Ryker really did amazing. Once we got him on tract with the pain meds and removed the IV, he actually slept a bit. We got to leave first thing in the morning and since we have been home, he has been a champ. I can really believe that he will bounce back from this crazy fast. He's kind of eating, but good enough for now. And after three nights, he is almost back to sleeping through the night. Told you he was a rockstar! I think a few more days and we will be back to our normal. I am really amazed how well he is doing! The metal bow will stay on for about 2-3 weeks to protect his healing face. The little yellow thing on the side of his nose comes off in a few days, and the clear gadget in his nose stays a month or so. It helps with the shape. So, we made it through and we are actually doing well. We're not through the woods yet, and who knows if with kids, you ever really are, but we got one down, and that's pretty dang good. Thanks everyone for your support. That was really all we needed to make it, lots and lots of support. Thank you for you love, prayers, and cheers from the sidelines. It has meant everything to us.
Day Two
Day Three

Okay, so you get the general idea, right?
Well, here is some of that nitty gritty I was talking about.
These 24 hours are awful.
They just are. Plan on it. Amp yourself up, because this is a big step.
But when you make it through it means you will have one less surgery to go through.

Okay, a few more gems.

Don't stay overnight by yourself. Even if you have family/friends stay until late and come early in the morning. Even if there are NO beds for you, let alone another person.
You will need the most support, mentally and physically at 3AM and you will really want someone there. Trust me. I didn't, and oh how I wish I had.

3AM was also the same time I ran down the hallway to find a bathroom where I promptly threw up. Who know why, stress, exhaustion, bad pizza? I
I'll never know, but this brings me to my next gem.
Depending on the time or year and pitucular hospital you stay at, you may have to share a room. Yup, I said share. They DO still do that. And if in fact you do end up sharing, Like I did, you may not get the side with the bathroom. So be prepared. It's incredibly awkward, uncomfortable, and disruptive. But you'll survive. Chances are this will not happen, but just a heads up.
As stated in the above, the dumb ass nurse who missed my sons vein, causing it to swell like a sausage is sadly one of many. Check to make sure the IV is actually IN the vein about every hour and save you and your baby much pain. I didn't even know to check, but wish I had. Be your little ones advocate. I will say, I have NEVER made a nurse friend during any of Rykers surgeries. Not on purpose, but I am not there to make friends, I am there to make sure my child is getting the absolute best, at all times.

The Hardware.
By looking at the "after" pictures you may notice a few additions to Rykers face. The two important ones are the Logans bow and the nose stent.
The Logans bow is the metal half circle taped to his face. Again, some Docs use 'um, some don't. They in no way hold the skin together. All they do is create a barrier to protect the face and mouth. With this on it acts as a bumper. Anything that would get close to the mouth hits the Logans bow first. Or if the baby was to roll his face to the floor or your shoulder, it again protects the mouth from contact. At least, in theroy.
In reality, I think its stupid. And so do a lot of Doctors. Ours said that we were to keep it on until it fell off, about 3 weeks later.
It came off the first day we go home and we nevered bothered to reattach it. For Ryker, It didnt really protect anything. In, fact it just gave him something to grab on to and mess with.

The nose stint actually IS extremely important. This is the clear nose tube wisker looking thing. These act as a brace to shape the nose as it heals. It is imperative to keep them in for the best functioning results, as well as appearance. The first set is held in with a stitch. A week later they take the stitch out. From then on you tape down the "wiskers" to hold it in. Again, this is where cut up bandaids will save you life. You will have to take the stent in and out often to clean it, and the Bandaid tape is the very best for that precious skin. These stay in for up to 3 months. Ryker got to the point where he would not keep them in during the day, but even then I would put the stents in at night. These stints can really make a difference in the overall appearance and shape of the nose. As he grew we went up in stint size a few times, and no matter the size it is awful to shove it up their nose over and over. Ryker HATED it, but once it was in he forgot all about it. So, I got really good at getting it in quick. I would put a little Auqaphore on the stint to help it slide in a bit better, distract him, and have the cut up bandaids ready to go. I got pretty good at it. Maybe I can do it for a talent show one day....
Anyway, this was another item we could cross off our surgery "to do" list and I was thrilled when it was over.
Looking at Ryker now, I am AMAZED. His lips are PREFECT! And I don't mean Motherly love perfect, I mean PERFECT. His nose looks amazing as well! Our surgeon is clearly talented. And I know I did everything on my end to give him the best results possible. That alone is pretty satisfying.

Ryker today. His scar is so unnoticeable that only when the light reflects off of it in a certain way can you even see it. Isn't he Darling!?

Taping and Ear tubes

If your lucky like me you just might get to "Tape" you babys face for a month before the lip repair. All Doctors are different so you just may dodge a bullet. If not, I have a few tips that I would have KILLED for! Enjoy!

A month before Rykers lip repair the Surgeon sent us home with some medical tape and the instructions to tape Rykers lip together and keep it taped together ALL...THE...TIME.
Let me tell ya, this whole taping thing was a NIGHTMARE!!!
Seriously, AWFUL!!!
The taping is thought to stretch the skin and prepare it to be attached with the best possible results. Fine, but just a few minor problems.
first, babies in general, especially babies with cleft lips, tend to drool, have runny noses, sweat, and so on. All kinds of things wet. Well, wet skin and adhesive do not mix!
Rykers tape would come off about every hour.
So get stronger tape, you might say.
We did.
In fact, we went through 6 different kinds of medical tape before we found one strong enough to hold.
Great! Problem solved!

Not quite!

THAT tape was so strong that it simply would not come off for cleanings or readjusting, and when it did come off, after much pulling, it would leave a rash. Nothing worked good enough to hold for longer then an hour, and still come off relatively easy when needed. We tried EVERYTHING! Both Ryker AND I spent day after day crying our eyes out. It hurt him, it hurt me hurting him....It was Awful.

Then a light bulb went on.
What is the best non-irritating, fast holding, water resistant "tape" for skin?


We took your standard Bandaid, (oversize ones work great too) cut out the gauze piece, and cut the sticky part down the center long way. We rigged the lesser adhesive tape by reinforcing it with the Bandaid tape. "t" style. It worked like a charm! Stayed super well, and came off decently when it needed to. Yeah!!!
This Bandaid "Tape" came in handy later too. For AFTER the lip repair.

So if lip taping is in your future, stock up on good old fashion Bandaids!

Moving on to Ear tubes.
If your little one has a cleft palate, it is EXTREMELY likely that he/she will need ear tubes. Really, NO BIG DEAL.
A lot of kids get them, cleft or no cleft. It is a "no big deal" add on. I strongly recommend setting it up so that the when they do the lip repair surgery, they also put the tubes in at the same time. Most Doctors will work with each others scedual to get this accomplished.
Ryker had been getting so many ear infections, we were THRILLED to finally get them in.
At some point he will most likely grow out of them, but they are a major blessing in the meantime.
Want more detailed Ear Tube info? Go here.


These are some of my very FAVORITE pictures of Ryker. My heart simply melts when I look at them. This is the last post I did on my family blog before Rykers lip repair. I don't think I will ever be able to look at these cherished pictures without tearing up. And I'm not exactly sure why. It was such a loss and a triumph when he had that surgery. Such conflicting emotions for me, but one sure thing these pictures captured. A smile.