HoneyCuffs and Miracle blankets

One challenge that we came across quickly and often, was keeping Rykers arms away from his face. There was 4 or 5 times that we were instructed by the doctor to restrain Rykers arms for his own safety. Even for weeks at a time.
The first time we ran into this particular problem, was after our first surgery. At the hospital we were given glorified toilet paper rolls (see above) and told to keep them on Ryker at all times for the next 4 weeks. I listened polity and nodded obediently, all while thinking in my head that these people were deranged. Anyone who has ever had a child, knows someone who has a child, or has seen a child on TV would understand that keeping a baby's arms restrained would be utterly awful, and a bit unrealistic.
Obviously there are extremely important reasons for the restraints. Babys have the tenancy to flail their arms about early on, and later are super prone to putting EVERYTHING in their mouths. Both actions being SUPER dangerous to a freshly healing mouth wound. The little muffins can cause some unintentional, but SERIOUS damage and pain to themselves in the blink of an eye. And after later surgeries, they may even intentionally pull, poke or play with something. Trust me. The last think you need is another "procedure" because your baby's hands got loose and caused some damage.
That being said, there is also what is realistic for you and your family. For us, the first thing we did after we got home from our first surgery was throw away the Velcro toilet paper tubes.

We were blessed to come across two very helpful products. The first being a simply marvelous product for Mamas and babies in general!
It is only the BEST SWADDLING BLANKET EVER!
It's called the Miracle Blanket. Check it out here.
They are awesome for like 96 reasons. One of them being that I could put Ryker in this baby and KNOW he was not going to wiggle out and get his hands free. Plus, he LOVED it! Win, Win! When he slept in it, he always slept better as a whole, and I was relieved to know he was comfy!
Watch how it works here.

The second sanity saving product is the Honeycuff. Seen here.
Watch how it works here.

BEST THING EVER!!!

With this, he could actually move around a bunch without getting in the danger zone. The darling inventor of the Honeycuff is a cleft baby Mommy. She knew there had to be a better way for arm and hand restraints for little ones, so she made her own better way. And I love her for that. She is a local Utah girl and insisted on driving 40 min to hand deliver my Honeycuff, so I wouldn't have to wait for shipping. She will always have a gold star in my book.

With these two fabulous items we sailed through the whole arm restraint thing, as well as you can sail through something like that I guess. But these truly made life a bit easier for us, and I highly recommend them both!

Honestly, I wasn't a freak about keeping some sort of contraption on Ryker at all times after his surgeries. I would let him be "free" a great deal. But at the same time, I would WATCH him and use my rather good common sense to judge when it was okay. I never utilized any kind of arm restraint for the full "recommended " amount of time. I knew my baby and I knew when both he and I were ready to put them back in the box. In fact, the surgery he had for his soft palate repair was right after he learned to crawl. The Doctor told me the standard, "arm restraints for 4 weeks," routine. I listened polity and nodded obediently, and ultimately did NOT ONE day with the restraints. Instead, I was extremely attentive, and took full control of what went in his mouth. Food only. That is what worked for us.

For another perspective on arm restraints, read below.

Are arm restraints worth it? Read this.

They say...Surgery one

Surgery One.
This is a post I posted on my private family blog about a week after Rykers first surgery. As I write this post, Ryker is 11 months old. This memory seems so long ago. Bitter sweet I guess. Okay, so just read it and then I'll recap.


Ryker had his first surgery about a week and a half ago. On one hand it is super exciting to start the process that will help our little man become more of a stud then he already is, both in physical appearance as well as function. On the other hand, it pretty much sucks IMMENSELY. This first procedure is to put a retainer like prosthesis in his mouth to help guide his palate where to grow, plus make it WAY easier to eat. Good stuff, right? Well, what they don't tell you is that the palate is semi-permanently held in with brackets and pins attached to his mouth and gum line. Ouch...and he has to relearn how to eat, which means he just won't for a while, and when he does it will probably hurt. Super. Also a small chain like thing is attached from one side of his gum line to the other to start bringing the overall gum line, lip, and palate to where it is supposed to be. Every two weeks they tighten it. They say it doesn't hurt. They say. They say a lot of things that make me want to punch them in the face. Anyway, my life is beyond nuts right now, but I know it will get better. And just when I can't deal anymore, I get tossed a bone. A good night of sleep (anything over 4 hours) a dinner from a neighbor, or a Great Grandma coming to save the day. So really, we are doing okay. And okay is okay for now. Ryker really is a trooper, its me that's a mess, and this was supposed to be the "no big deal" surgery.....They say.....;)

Dr. Morales, the surgeon. I have a love-hate relationship with this man.

Now this man, I got nothing but love for. Allan has been absolutely amazing. I would break into a million little pieces without him.

You can't see much but swollen lips and the chain.

This is a week after his surgery. the little ball thing is to help shape his nose. And though you may not see it, the gap is starting to close, ever so slightly. Okay, baby boy, hold on tight, here we go....

Okay, welcome back to the present. So here are a few things I want to say about my experience. The good nitty-gritty stuff that I know you are all dying for. Hopefully it will be useful for you. There are a few things I wish I would have been a bit better prepared for, one of them being that the day of your surgery will constantly be changing.

The day before the big event. You will be told a time that you can no longer feed your darling child in preparation for his surgery. Empty stomachs = no puke. No puke = a breathing baby. We want breathing babies.
You will be told a time to check in at the hospital, and a surgery time. You will plan for what you have been told and act accordingly.
The fun part. And this goes for all the surgeries.
You will get at lease one call "bumping" you" to a later surgery time for any and all kinds of reasons. But no, no, you can not feed your baby in the meantime. You may get a few of these calls. You may have even made it to the hospital only to find that you will have another 3 hour wait. With your STARVING child to keep entertained. If you are a lucky one who gets to have a surgery day run as planned, I am thrilled for you. Cherish that you get to miss out on all this extra grief. And say a little prayer for the rest of us to not pull our faces off with stress and frustration.
One little last tip on that, please, please, please, follow the directions you are given about what and when to feed your baby post surgery. Even though it is likely things will change. I had a friend and fellow Step by Step follower get "bumped" almost 5 hours for her little mans first surgery all because another family didn't follow directions with feeding, and fed their baby long after they weren't supposed to. Don't be "that" person who makes others suffer because you didn't follow directions.

As for the surgery. They will tell you it is really just a "procedure," not a surgery. Nope, in my book anytime you get put under for adding, taking out or adjusting body parts, that qualifies as a surgery. And all you Mamas, the first one is rough. It's almost impossible to hand over your child at the double doors of the surgery room to someone you have never met before (the sleep doc) without at least tearing up. Knowing it will be super hard on all of you, but for your child's own good, doesn't really soften the blow. But this one is only about 30 minutes. You can make it! Bring an episode of "The Office" to keep you busy in the waiting room.
When they are done, your little stud/princess will have a slightly swollen face with some brand new hardware. The "chain" is almost more like a flat plastic figure 8 band. This is what they will tighten about every two weeks to start everything moving to where it should be. Some have better results then others. But it will definitely point you in the right direction.
Also, at this surgery they will install a retainer-like part on the roof of the mouth. (for cleft palate only) This may have a little ball pushing out the nose for shape.
A side note about the prosthetic palate.
A few days before your first surgery you will meet with a pediatric dentist to get a mold of your babys mouth. This is who will make the actual prosthesis. (Again, only for cleft palate) This is the very first surgical step you will take on you cleft journey. Really, it is no big deal. They have a wad of fancy foam they shove in his mouth for about ten seconds. That's it. But you know what? It was surprisingly, embarrassingly hard for me. They had me hold Ryker on my lap. The doctor explained that I would have to pin him down and hold his head still for 10 seconds while he shoved the foam in his mouth and it set. He informed me that it wouldn't hurt, but Ryker sure wouldn't like it. The doctor shoved it in his mouth and I think I made it through 3 seconds of Rykers strangled, muffled cries, all while pinning his flailing body down before I burst into tears. I surprised my husband. I surprised the doctor, and most of all I surprised myself. It really did take me a few minutes to calm down. It rocked me a bit. This was so minor, I was confused about why I lost it the way I did. After we left I thought about it.
For me I had known about Ryker's cleft from midway through my pregnancy. I had a lot of time to absorb the situation and prepare for everything it was going to mean for our family. But that first appointment was when it became extremely, painfully real for me. Wow, I am tearing up right now just thinking about it. I knew that we had actually taken the first step on our journey to getting Ryker's cleft fixed, and this was just one of many not so pleasant experiences to come.
So my advice?
Make your husband, or partner, or ANYBODY else hold your baby for this one. Look away, plug your ears and count to ten. Then it will be over. And you can be the one who rescues your muffin from the mean 'ol' dentist. Just kidding! ;)Do what you feel is best.

Okay, back to the surgery part. So the hardest part about the surgery for us was that Ryker's whole mouth was not only hurting, but it had completely changed, meaning that he would have to relearn how to eat. This is where the on purpose, broken nipples came in handy. We could at least squirt milk into his mouth, but it was great to have a complete palate. He started to eat much better pretty quickly. On Ryker, the chain didn't bring the gum line together too well, partly because his cleft was pretty wide, and partly because he kept pushing his tongue through the gap. But it did help a little, and after Ryker got used to the new palate in his mouth, it was great for all of us!
Okay, last tip. Because of the chain, and how easy it would be for an infant to accidentally rip it out, they send you home from the hospital with arm restraints and strict instruction to keep your baby in them at all times until his next surgery in 4-6 weeks. Yikes!
Well, what they give you is glorified tolite paper tubes......with ducks on them. That brings me to my next post. Honey cuffs, a brilliant alternative.

Feeding

One of the first concerns with babies with clefts is feeding. In the hospital, they STRONGLY encouraged me to try nursing. It was super frustrating, but I do think it was important to hold him to me those first few days and let him try. We were both getting a different kind of nourishment. In the end, the only milk he could get was the mike I would squeeze into his mouth myself. A bit graphic, but a fact nonetheless.

At this point I had wrapped my mind around not being able to nurse, and I was okay with it. I still got choked up the first time he tried unsuccessfully, but I had accepted it and was ready for plan B. I was planning on pumping for a while, because then, at lease I could give him that.

I wish I could tell you exactly how it will be if you are joining me on this crazy ride, but I can’t. I can only tell you what worked for us. And when I say “worked,” keep in mind that as I write this Ryker is 8 months old, and wearing 12-18 month clothing. Clearly feeding is NOT an issue for us!;) It just was a matter of finding what worked. For Ryker, it was the Pigeon Nipple.

Oh Pigeon nipple makers, how I want to kiss you! You should have your own holiday, truly. Again, go ahead and Google it, I’ll wait.

Check out this video...

Back so soon? Okay, because babies with a cleft lip can almost never form complete suction, a “normal” bottle and nipple set up won’t do. It’s like sucking through a straw with a hole in it for our little troopers. Also, if you have a baby with a cleft pallet as well, there is the challenge of not having the full palate to aid in reverse pressure, meaning the roof of the mouth being something to push against, and nipple positioning, meaning that the palate is the cradle for the nipple.

The key way the Pigeon nipple works is by simply adding a one-way valve (about the size of a dime) inside the base of the nipple. Once milk is in that nipple chamber, any amount of pressure forces the milk out the nipple tip hole, and in the baby’s mouth, instead of back into the bottle. Genius!

The Pigeon nipple also aids with cleft palates by having one side of the nipple made out of a sturdier material, and the other side made more pliable. The sturdy side is placed against the palate, or void where it holds its shape instead of collapsing. The softer side rests on the tongue and has the feel of a standard nipple. Get it? Told you, pure genius!

This is what worked for us. We still use them. But I do have a few tips.

First, right away Ryker started getting this canker-looking sore on the side of his palate where his cleft started. (the roof of his mouth). The doc said that it was from constant pressure from the nipple rubbing, and the fact that he had to work so hard to eat. (check for this on your little tyke). He told me there was nothing to do until the surgery where he would get his prosthetic palate. I didn’t like that answer. Ryker would cry every time he ate because it hurt so much. And sometimes he just wouldn’t eat. This KILLED me. And I REFUSED to let it continue. My solution was simple. I would make it easier to eat. How, you might ask?

Let me tell you!

On the Pigeon nipple, like many others, there is a “Y” slit. This is where the milk comes out. I got a super sharp knife and slit the existing “Y” to create a slightly larger “Y.” This made milk come out faster and easier. I did this trick, and within a week Rykers sore was gone! He could eat at a much more realistic speed, without so much friction on the top of his mouth. Worked for us!

Another tip is, that for the first few weeks and months after Ryker was born, it seemed easier to just squeeze milk into his mouth until he got the hang of eating. The best bottle for this is the football shaped one made by Mead Johnson. (see below) I would pair this bottle with the Pigeon nipple and we had magic!

Last one. Don’t buy your Pigeon nipples and bottles online. RIP OFF! Children’s hospitals have them in the pharmacy for WAY cheaper. And I strongly recommend getting as many as you possibly can the first few days after you have your baby, while your still in the hospital. They will give you a few free, but just keep asking for more, from everybody you see. And then hide those puppies and ask for more! Save yourself some cash. Trust me, you’ll need it. Utah peeps, Check out PCH! They have Pigeon nipples for under $5! Score!

Overall, feeding was so stinking frustrating. I hate to say it, but it was. I would be crying as much as Ryker was. Really. And just when we thought we got a grasp on things. Something would change. But we did find our niche. And we got through it, and now I have a boy that's to big for his britches....literally, he's a TANK! So I hope these tips help, and good luck!

Birth Day

September 15, 2010, just before noon, Ryker Knox was born. He was 7lb, 9oz and 21 inches long. The delivery was perfect. Smooth, with no surprises. I felt as ready as I ever would be to meet our little boy and finally see what we would be up against. I was so completely excited and thrilled, and though I hate to admit it, scared. Not of the delivery, not of the pain, but scared of how severe the cleft was actually going to be, and how I would feel once I actually saw it.

I had set myself up for the worst case scenario. Meaning a wide cleft through the lip, palate, and gum line. I looked at millions of cleft photos in weird attempt to desensitize myself, which, I actually recommend. I was preparing for the worst, and hoping for the best. That way, I thought I would be pleasantly surprised when it wasn't as severe as I had planned for.


Well, It was EXACTLY what I had planned for. Ryker had a relatively wide cleft....all the way through. Lip, gum line, and full palate.

I am so grateful I did what I needed to do to prepare myself, and really, it made a HUGE difference for the better in how I felt. But I still couldn't escape the fact that my heart was broken when it was confirmed that it was indeed, exactly what I had expected.

I desperately wanted Ryker's Birth Day to be a celebration, not a day for mourning. But in truth, it was a day for both. I knew what the full cleft would mean to my precious little baby and my family. It meant more procedures and surgeries over a longer span of time, more heartache for Ryker's discomfort and pain, and more struggle for my family as a whole. But it was what it was, and we were a team from day one. And a strong team at that! It wasn't what I had hoped for, but we were ready.
These feelings lingered the entire time I was in the hospital but quickly were overshadowed by my absolute, unconditional love for this perfect addition to my life. He really was darling, EXTRA wide smile and all. We were so excited for our little man to finally be here! We were so grateful for him and couldn't wait to be his advocate.

I was not thrilled by the situation, but emotionally, I was at a point of absolute assurance that I could handle it. WE, could handle it. And we could handle ALL of it. Whatever IT was.

I knew Ryker would be a rockstar. And he has been.

Okay, so here are the nitty gritties. I think emotionally preparing yourself, as best you can, for the unexpected emotions, and situations you might face, is an absolute must. For me, I did this by learning about the worst case scenario, and then preparing myself for that, by expecting just that. For me, that worked well. We had a plan of attack all set up, and somehow that was extremely calming to feel like I had some control in an uncontrollable situation.

This is our muffin Ryker Knox, and this is what a full unilateral cleft looks like.


I asked the surgeon where Ryker's fell in severity. He said it was about a 6-7 with 10 being the worst. Bilateral are typically the absolute most severe. A bilateral cleft is where a cleft is on both sides. Almost always they can tell in the ultrasound if it is bilateral or unilateral as well as what side it is on.


Fun Fact- Guess who had a cleft? Tom Brokaw! Yep! Crazy right? And that man is like 100 years old! Think of all the amazing new technology and procedures we have since he got his repaired! King Tut also had a cleft palate. Weird.

Anyway, more pictures...

So pink and perfect. I was in love.



Me. One proud, excited, scared, nervously thrilled, ready for an adventure, mama. Hold on tight, here we go!






Okay. So I couldn't help it! I had to give you a sneak peek of our little stud at 7 months old. Don't you just want to squish him!

Finding a Doctor

For us here in Utah, where we must have poisoned water or something, clefts are a rather common occurrence. In fact, it is the most commonly diagnosed defect in babies, and that applies nationwide. Over all, clefts are just really common. But you would never know it thanks to everything we have available to correct them so early in life.

Okay, I have to stop here. I hate using words like “defect” or “correct” because it makes parents of children affected by a cleft, myself included, get a bit defensive. It’s hard to try and explain how my own emotions are so completely contradicting.

The fact of the matter is that my child did not develop completely correctly. That’s the cold, hard, truth. But somehow I look at him, before surgery, and though I desperately want to “fix” it both for appearance as well as functionality. I find myself feeling like my child is perfect just the way he came to us, with his heart-melting, EXTRA big smile, I absolutely love and adore him just the way he came. It’s a strange emotional battle with myself. On one hand we have these babies that, in a sense ARE perfect. They are ours, and they are absolutely perfect to us. They are just the way they should be…kind of. Maybe it’s just me, but it's such tricky emotion how I feel about this. I can barely explain how I feel to myself.

I guess the only way to sum it up is this. You will cry with such conflicted emotion the day your child has the surgery for the lip and nose repair. You will be astonished and relieved that he looks “normal,” and yet you will miss the perfect face you fell in love with.

I did, and I bet you do too.

So, please excuse my use of words such as “normal,” “correct”, or “defect”. They are indeed, absolutely accurate, and I know it. Yet somehow they don’t completely fit. If you are a mother or a father of a child with a cleft, I imagine you relate. I hope you do, because it’s comforting to feel like were all drinking the same purple punch.

Sooooooooo, back to finding a Doctor.

Though I imagine that it is pretty much a similar process in most locations in the US, the way it works for us cleft parents in Utah is this;

You are informed of the situation.

You are put in contact with a grief counselor.

Your grief counselor and/or the ultra sound tech will inform your personal OB, and the local children’s hospital of your families “situation.”

Your OB might call you to see if you’re “okay.”

Someone on the “cleft team” at the local children’s hospital will contact you and set up an appointment to meet.

At this appointment they will go over all the information you already learned online from your hours of research. You will smile politely and act like this is all new to you, and if you're lucky, some of it might be.

They will give you a list of local doctors who specialize in cleft repair from which to choose.

Ahhhhhhh….the list.

They will try to answer your questions.

You will be frustrated that no one really can.

No one can tell you how feeding will work. No one can tell you how many surgeries it will take. No one can tell you how severe the cleft will be. They will tell you all the things that may or may not happen.

You will be frustrated that you will just have to wait and see, and do a lot of trial and error.

The not having all the answers will drive you crazy if you let it. So you won’t. (refer to last post:)

You will then begin one of your first proactive activities. Yippee!

You will go home and you will research the list of doctors.

I read reviews of doctors from patients. I looked at websites and photos of their work. I checked to see how many cleft repairs they have done, and continue to do. Were they involved in any programs like Operation Smile, or Smile Train? That mattered to me. (Google these if you don’t know what they are.) Did they take my insurance? I researched each doctor's particular methods and timing for surgeries and recovery. Trust me, they all have a different ways of doing things. I even had a chance to talk to some of the nurses who work at the children’s hospital, and get their personal favs, and reasons for their preferences.

I narrowed it down to two doctors. I made appointments.

You have to meet the person who you and your family will be working with closely for the next decade or longer. You really do. You need to make sure that this doctor is the right choice for you, and your family. Meet at least a few doctors. You will know the surgeon that’s best for your little monkey.

I not only met a few potential Doctors, I fully interviewed them. Really. I even had a list of questions with me that I wanted to ask. I started it weeks before the first meeting and kept adding to it each time I would think of something I thought of something important. Then at my appointment I whipped out my list and went to town.

Meeting with Doctors will cost you most of the time. Find out when you set the appointment. Normally its the cost of a co-pay. So narrow your choices down to 2-3 then go in with your own list of questions. It’s soooo worth the money.

Ultimately, we went with Dr. Louis Morales. This is him, holding Ryker at our first Surgery at Primary Children’s hospital.

When we went in to meet with him for the first time, we waited in the lobby at the children’s hospital. Like I have said before, that waiting room is an incredibly humbling place. The waiting room serves about twenty doctors, so you have children affected in every way waiting to be seen or treated. We looked around and I suddenly felt guilty for the pity party I had been holding off and on in my head about our family’s situation. I realized how good we actually had it. I offered a prayer of pure gratitude right then and there. I was so grateful that my trials were my own.

There was a little boy running around in front of his Mom and his Grandma about ten feet in front of us. He was darling. About two years old, he was a little stud. I watched him play for about 15 minutes and I couldn’t help wondering why he was at the hospital. He was an active, healthy kid. I didn’t see any siblings, so he must be here for himself. When I asked my husband why he thought this little dude would be here, only then did we both see the tiny, barely noticeable scar on his lip. We had been watching him for twenty minutes and never even noticed! He once had a cleft. Then his mother called out to him “Ryker, stay over here.”

Yep, the little boys name was Ryker.

The same name we had just decided on for our own son a few days before. Creepy, right?! I almost lost it. Here was this little boy who was so happy, healthy, and so absolutely perfect. It gave me such hope for us, and our child’s future. I know in my heart that this was a small tender mercy from God. A tiny glimpse of what it could be for us. I beamed for a week from that little encounter. And when we finally went in to meet Doctor Morales, I was on my own personal high.

The following are some of the questions I asked the doctors we interviewed. I had done a lot of research at this point so I had very specific questions.

Do you take our insurance?

How do you bill?

What is your timeline for lip and palate repair surgeries and how flexible are those timeframes?

What are your specific methods of lip and nose repair?

What are your specific methods of palate repair?

Do you use any unique methods for surgery you find beneficial?

What are your recommended procedures for recovery?

Do you use No No’s, a Logan's Bow, binkies, etc. If so how long do you use/wear these?

How long will we be in the hospital with each surgery?

Do you do any special scar treatment?

Do you recommend ear tubes, and why? Will you allow another doctor too put them in at the same time as another surgery?

How often/how many do you perform these surgeries (per year)?

Do you offer any kind of service to Opp Smile or Smile Train, or the like?

Is there anything special to set you apart from other doctors?

Do you have pictures of before and afters?

I’m sure there are plenty other really good questions to ask, decide for yourself what you want to know. As important as getting your questions answered is, just feeling out your doctor is a major part of your decision. How do you like his bedside manner? Does he take the time to explain things to you? Do you see him being a good team member in your child’s cleft adventure? Bluntly, do you like him? Overall, how does your parent radar react?

Once we decided on our Doctor, it was such a relief. It felt so good to have taken one of the first, most important steps. Now we had a direction and confidence in the process because we had confidence in our doctor. One step down, 1,653,987 to go! Just kidding, but sometimes it does feels like that, and that’s okay, I guess.

Research

Okay, time to get educated. Like I said before, one of the first things I did was to research as much as I could about cleft lips and palates, until I felt like I had a firm grasp on the topic. And good golly miss Molly, how the internet can be a double-edged sword. I found all the “in your face, no sugar coating it” type of stuff. Which was good and bad. I found pictures that would break your heart, and photos of repairs that would blow your mind. It was scary to learn about the most extreme cases not knowing if Ryker would be one of them. All the surgeries, procedures, and problems he MIGHT have. So I decided to follow some sound advice.

Prepare for the worst, and hope for the best.

Under promise, over deliver.

And, my personal favorite, Expect everything unexpected.

Meaning, just be prepared to go with it, whatever “it” may be. That was our only choice and I cannot tell you how much peace embracing this idea has brought us.

EVERY SINGLE ONE is different. Each child, each cleft, each Doctor treating each child, and every situation. All different. And just when you think you have a plan, and you have it all under control, it will change. But really, is that so different from parenthood in general, in life in general?

Do your research, absolutely do. But don’t go nuts! And remember to take everything with a grain of salt. No matter how much research you do, you still will serve yourself and your child best by just being flexible. As much as I wanted a perfect step by step plan in the treatment of my child, I have discovered that my sanity survives by only focusing on what’s directly in front of me.

Sometimes, I can focus on months at a time; sometimes all I can see is tomorrow.

If you don’t do this, you will feel like you are playing a game where the rules are ALWAYS changing, because, trust me, they are.

Really, instead of “Step by Step Cleft”, I should call this blog “One Step at a Time, Cleft!” Because that’s really is the best way to do it!

So go out there and get educated, kids! The word "cleft" in Google should do the trick!

Being "Okay" With It

I love being Prego. Really, I do. I don’t get sick. I don’t throw up. I don’t get too uncomfortable.

Me and pregnancy, we’re buds.

Okay, all of you who pregnancy is your mortal enemy, take a moment to hate my guts so we can move on. If it makes you feel any better, I may have been dealt the “great with pregnancy” card, but I was apparently absent when the “nice butt”, and “tolerance for others” cards got handed out.

Anyway, I was sad to discover that after I found out about the baby’s cleft, a little bit of my enjoyment about being pregnant seemed to vanish. And in its place, a flavor of bitter-sweetness soon took over.

Though physically I was still having a rock star pregnancy, emotionally I was in mourning. Every time I would get excited about the baby, the sweet. I would quickly remind myself of what we were going to have to go through with him, the bitter.

I was mourning to loss of the option to nurse. I was mourning the loss of a husband only excited about his littlie buddy, not worried about him. I was mourning the loss of the idea I had in my head of what it was supposed to be like. How would this affect my child in this already sucky world? I was mourning the idea of a “perfect” birth day, because now it was slightly spiked with the reality of the situation. I would actually, finally see how bad Rykers cleft was. Was it just the lip? One-two surgeries. Was it the palate too? 4-5 surgeries. I was so concerned about what this would mean for Ryker. And, oh my gosh, how scared I was at how I would react at seeing my little man for the first time. How my husband would react. How we would both feel.

I knew how I wanted to be, I knew how I wanted to feel. And I was dead set on “being okay” with the situation. And after a bit of time and a dose of reality, I really am.

The day I found out I was a wreck. God and I were NOT on speaking terms. I was mad. I was sad. I was scared.

I cried. I wallowed. I had a rather good pity party.

These were real emotions. And you know what? They were justified. But by day two things started to shift. I started to accept my newly changed reality.

I got active. This was the situation, and I wanted a plan of attack. So where do we all go for information overload? Why, the Internet of corse!

I started researching anything and everything I could about clefts. I wanted to know it all. And yes, some of it was scary, but If we were going to deal with this I was going to be grossly over prepared.

So at this point I’m sure it won’t shock you to find out I’m a bit of a control freak.

HOA president, own my own business, alphabetize my kids toys, yup, you know the type. So let me tell ya, this little unplanned event was just what the doctor ordered. Really! I couldn’t control it. In fact this whole cleft ride is all “play it by ear.” And its good for me…I guess.

Anyway, about a week after we found out about Ryker, my husband and I went away to Mexico for a week, just the two of us. We had had this trip planned long in advance, but the timing turned out to be a blessing. We were able to get away and clear our heads. It was on this trip that God and I made up, and I made my peace with our new adventure. It was also on this trip that I recognized the immense blessings I had surrounding me on a daily basis. I felt the breath returning to my lungs.

A month later we sat in the waiting room at Primary’s Childrens Hospital. We were there to interview a surgeon who does cleft repairs. There is nothing more humbling then sitting in a waiting room at a children’s hospital. We sat with families who were there for all kinds or reasons. It was there, in that waiting room, that I realized I had a child with a temporary, correctable situation. How lucky was I? This was not the case with so many of these families. That was the day that I made the complete shift in my perspective.

I realized that yes, having a child with a cleft really sucks. It does. And yes, it’s going to be really hard on me, on my family, and on my child. But I can handle it. We can handle it. You can handle it. And I plan to do it with a little grace and a lot of flair.

Honey, I’m Home…

I walked in the door of our home with eyes red and swollen, from bawling the whole drive home from the Doctors office. I’m kind of surprised I made it home alive, considering I couldn’t really see through the flowing tears. You may have thought I would have called my husband, Allan, and told him as soon as I found out about the baby. But I didn’t.

I couldn’t.

In some weird way I felt like I was protecting him, even if it was only for a small time.

If he didn’t know, it wouldn’t hurt him.

Funny how the knowledge of something can cause actual physical pain.

Plus, I was scared to tell him. Would he be mad? At me? Or would he just be sad and worried and disappointed? Would he think I had done, or not done something to protect our precious cargo? Would he think it was my fault?

Was it?

I couldn’t answer his questions, because I couldn’t even answer my own.

On the way home I thought about how I would tell him. I would cry my eyes out, pull myself back together, and calmly inform him in the small change of plans.

Yeah right! …That is soooo not what happened.

I was a major wreak when I got home. I sat in the car for a long time, trying to calm down, but I just couldn’t.

Finally I walked in the house. Allan heard me come in, and met me at the door. When he saw the mess that once was his wife, he grabbed me and held on.

“Is something wrong with the baby?”

He got his answer when, for a good five minutes, I clung to him and sobbed.

It felt really good to get it all out. So when my tear ducts were empty, I told him.

It was SO hard to tell him.

He had mountains of questions, just like me. He was shocked and upset and concerned. But he didn’t break. And I really need him not to break that day.

He was strong for both of us.

Allan is a very even keeled kind of guy. We balance each other out. He is the perfect yin to my yang. Not super emotional, rarely yells or freaks out, and almost never will have a meltdown. He wears his heart on his sleeve, and calls it like he sees it. He’s calm, funny and very chill. He takes his cards, and does the best he can with them. He is the perfect person to handle any kind of situation, because he is adaptable. I couldn’t imagine going through this challenge without him. We really do make a great team, but even so, this little adventure still sucked for him as much as it did for me. And as much as I saw on the outside, I wasn’t in his head. Many of you have husbands/wives or significant others going through this right along with you. How are they doing? Ever wonder what they are really thinking and feeling? Well, stop wondering.

Ask.

You are a team in battle for the good of your child! Cheesy, I know, but true. Talk openly about it and be each other cheerleaders and shoulders to cry on. Trust me, you'll need both.

“I think this baby has a cleft lip…,”

“I think this baby has a cleft lip…,” said the doctor in a very calm, nonchalant tone. I was at my 20 week ultrasound, all by myself, and I suddenly felt like I couldn’t breath. Sound familiar?

Let me back up a bit.

My husband and daughter had come with me a week prior to my FIRST 20 week ultrasound. Everything looked good, but they couldn’t see the baby’s face. They could see the profile, the top, and the view from underneath. But they couldn’t get a straight on shot. Baby boy just wouldn’t cooperate. Because they had seen everything else they needed to see, and what they did see looked perfect, they almost didn’t have me come back. But when they decided to do a follow-up ultrasound, I didn’t complain. I was thrilled at a chance to see my baby again. It never crossed my mind that there might be a problem.

A week later, I went back in for my follow-up, minus one husband and one 2-year-old daughter . There was, after all, no reason for them to come with me.

The nurse did her thing. We got the view we needed and she casually said the doctor would be right in. The doctor did his thing, and then very casually dropped a bomb on me. (Refer to the above) The first thing I said, in a very weak voice was “Are you kidding?” He responded with a casual, "No", and tried to point it out to me in the blur of back and white on the screen.

I did pretty well… for the first few minutes anyway. I was very calm. I immediately bombarded the doctor with questions. As far as I was concerned cleft lips were 3^rd world country problems. Did he not realize we were in AMERICA? I mean really, my only knowledge about clefts came from the operation smile infomercials. It definitely didn't happen here, and it absolutely did not happen to MY baby.

He proceeded to tell me that, in fact, he sees a cleft about 2-3 times a month and that it’s the most common birth defect. Okay, that explains the casual attitude, but didn’t he realize that this was MY baby he was talking about? MY child? And then I asked the question that every Mother who has shared a similar experience desperately wants the answer to be “no”.

“Are you sure?”

And like all the responses to all those Mothers in mirrored experiences, “Yes, I’m sure,” hit me like a ton of bricks.

That’s when I lost it.

The doctor left, explaining that the grief counselor would be right in. There I was, in a dark room, all alone, sobbing so hard I simply couldn't catch my breath.

For those of you reading this, I may have just hit a nerve. This account may be all too real for a few you. And it’s in part because of those few of you, that I started this blog.

Also, I wanted to have someway to document our personal journey with Ryker, our son. I wanted something for him to look back at and read, so he could never question how much we love him. We have, and will do anything for him.

It is my deepest desire that this blog will be a useful tool in your personal journey. I warn you, I am not a doctor, and I’m not a specialist. I’m just a Mom who thinks that just maybe, I can offer some insight, information, tips and camaraderie to those of you just starting your unique path.

There is something that binds us when we feel the same pain. We like to know that there are others out there have the same battle scars that we have. It gives us strength to know that we are not alone in our struggles. And to you, you are not alone. You are among some of the strongest women out there. It was some of these women, sharing this same journey who gave me strength when I needed it.

You will get through this. HOW you get through this is up to you.

I promise you one thing, you are so much stronger then you think you are, only someone like you could handle this.

I don’t know if what I have to say will actually help anyone. I’m completely a spaz, I talk way to much, and most of that is out of my ass, but even if this blog ends up being just for Ryker. I know my time journaling will be well spent.