It's been a while since I have posted a blog, I would apologize but I just didn't know where I wanted this blog to head after finding out about our miracle misdiagnoses... so after much thought I have decided to just talk about what's going on presently, my individual goals and interests instead of focusing solely on medical issues like cleft lip and or palate.

I am about 4 days away from finally meeting our little guy! I'm sitting here trying to figure out everything I need to accomplish before we head to the hospital for my scheduled c-section and guess what I am thinking about?! How I should wear my hair for surgery day! Haha! I've actually done a few searches and the most I am coming up with is a pony tail braid or pigtail braids. Except... I hate those types of braids in my hair and I'm not so sure I want braids in the first pictures of me with my son. Gah! So I'm thinking messy bun with maybe a braided bang? I'm going to check with my doc on the rules in a couple of days since some medical sites that I researched asked that you wear your hair down. I know they usually say no makeup/nail polish etc. but I'll need something to avoid this look that I had going on 6 1/2 years ago: 

Okay to explain why I chose these. I simply love the idea of shaggy bangs but I don't have them... Just wondering if maybe I should get some to help camouflage my incredibly swollen face and give me a new do that will compliment the messy bun I will be wearing for the next 18 years of my life. I simply can not wear my hair down in a side bun the day of surgery because of laying flat but I could add this to my after surgery look. I like the messy braid and simple braid but not sure about the inside out braid... It doesn't blend well but who knows how I'll feel. Again, the point is to avoid "cockatoo" and feel like I am put together when the pics are snapped and until my first time I can shower.

I plan on adding a little bit of natural makeup to help with picture taking. My face is horrid right now. I have never had so many breakouts in my life and I'm expecting a boy! I thought baby girls stole your beauty?!

Anywho... That's what's on my mind for now. I'm going to go through my hospital bag and talk about what I've packed and why and then follow that one with my pre-op appointment to give an idea of what to expect day of surgery. Oh and then of course we'll definitely announce the little mister here as well! See you guys soon!

First and foremost let me say, all things that are good and wonderful come from God. I am in awe of Him and the miracles He performs and today we get to be the recipients of His amazing works. In the book of Mark we are taught how the Pharisees and others watched Jesus perform miracles and they still wouldn't believe that he was the Messiah. They denied him his honor even when they had concrete proof right in front of their faces. They persecuted him and criticized his every move. However, that didn't stop Him from continuing his ministry. He kept performing miracles for those who believed and trusted in Him to reward their faith. He knew what that would do though, it would cost Him his life but he fulfilled God's plan anyway so that you and I could live and have everlasting life.

Now behold one of Jesus' miracles in modern day... Today I went to an appointment with my perinatal doctor. The purpose of this appointment was to get pictures for our Riley appointment with our cleft team on the 28th. I can happily say that we are able to cancel that appointment because our son's diagnoses as having a cleft has been retracted. Yes, our son has a misdiagnosed cleft palate and lip and he no longer is believed to have anything on his face or his palate affected by a cleft. The whole fact that we will not have to put our 10 week baby through any surgeries or that I will be able to nurse him like I have longed to since I found out I was pregnant is shocking enough. But then you put the story into perspective and you get to see God's amazing power to change "the ruling on the field" as our pastor at Grace Community calls it. Two ultrasound techs and three highly trained doctors who thought they had it right are now shaking their heads wondering what happened. I know there are several of you thinking there has to be a medical reason why this has happened and I could give you one but I can't explain why that many trained professionals could possibly get it wrong. This is simply and truly God showing off, remember all good things come from Him and Him alone. Simply in awe.

When I originally began this blog, it was suppose to be about the journey of our little man's cleft and my struggles as a mom overcoming the obstacles. I wanted this blog to help another mom in the same situation just as other blogs and websites have helped me. I definitely do not have any qualms over sharing my faith but I didn't really see this being a "faith blog". However, someone is obviously using our situation for His purpose and I'm going to step back and let that happen. Last week our post reached over 602 people! Yes, 602 individuals. Make no mistake, it wasn't 602 page views, there were 602 UNIQUE people that read that one post. I originally thought, "Great! That's 602 people that I don't have to explain our son's cleft palate and lip diagnoses to." Then this morning, I realized that the profound way Jesus is working in our lives was revealed to 602 people! What a way to be used by Him!

This last week we had so many people reach out to us. There are many of you covering us in prayer through this journey and for that, I can never be greatful enough. I don't want anyone to think or feel they shouldn't reach out because I let my raw emotions show just how vulnerable I am to comments by individuals. Look, I can't control what people say... The only thing I can control is how I respond to that. I'm in no way holding those people accountable.

Some things have been said in the past and recently that hurt, not because of the person being ignorant but because my heart wasn't in the right place. This morning I had the most amazing opportunity to get my heart where God wants it to be... In his hands faithfully trusting him to take my burdens and make them His own. I know I am going to need this reminder from Him more than once throughout this journey but I am thankful that He loves me so much that He is willing to keep letting me see He's got this. We aren't alone.

I have been carrying this burden of this diagnoses and thinking I had thrown it out to Jesus, proclaiming it His burden. But I was mistaken. I let much of the "planning" and "educating myself" overcome me. I have read and researched everything on breastfeeding a cleft palate baby, formed a plan on feeding him and two backup

plans just in case, changed doctors to care for me during my pregnancy, changed delivery hospitals, found alternative arm restraints for our sons first surgery, found a bassinet that will prop him up so he doesn't choke on his spit all in the matter of 2 days. Let's just say I was exhausted by the end of that.

I really believed I was doing what was best, informing myself and getting ready for his arrival in oh... 16 weeks. Not that I won't have anything better to do with my time... What I really was doing was worrying and causing anxiety. Once again, God had to throw something in my way to let me see what I was doing to myself. We were asked to go to a cross at church and write down a burden if we had one and leave it there, at the cross for Jesus to take care of. Oh dear tears. My paper said, "Our baby's health." My insides shook and tears fell hard. No longer am I carrying this. It's His. Jesus, you deal with this and you show us where we need to be and what we need to do to get our little guy through this.

We have an appointment with Riley Hospital For Children's Cleft Team on October 28th. That's our next step and that's the only step I am taking. I'm not ashamed of what I have done so far but relieved I don't have to worry anymore. Naturally, I research and naturally I plan ahead. Some of my natural instincts are just defense mechanisms to keep worry and anxiety at bay. If I have a plan, I don't have to worry what will happen... if I research then I have the knowledge and to me, knowledge is power. All of these things can be healthy but when you take it on and lose sleep to the research and planning you are now forming an unhealthy habit. I need less stress, anxiety and fear in my life right now... I'm pregnant! That's exactly what I intend to do! :) Are there things that cause you anxiety in your life? Money, relationships, sickness, weight control issues, infertility? Throw the burdens at Jesus! He will gladly take them and relieve you of the fear and anxiety!!

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People hurt people, physically and emotionally. I have a hard time trusting people with my emotions since people hurt me all of the time, I'm quite sensitive to what people say and do. I'm not perfect so I know I have done the same. But this is an issue. We found out three days ago that our son was going to be born with a cleft palate and a cleft lip. I was sad about the palate because I knew breastfeeding was out of the question and I would have to pump, But, I started on feeding plans and research and found out that I didn't need to lose the bonding time with him. Even though he wouldn't really be able to latch and get much milk from me for nutrition, we could still have the nursing for comfort, for both of us.

So, all in all I was okay. BUT (big but) I wasn't ready to share this with the world yet. I didn't want pity and I didn't want minimizing from someone who hasn't gone through it. In the grand scheme of things, yes I know, it could be worse. He could have life threatening complications or his cleft could be bigger and more difficult. However, this is our baby and our journey. We will have to live with this every day. I don't want people to feel sorry for us either. As a mother that has gone through weird looks at our daughter and many questions I was afraid of getting my feelings hurt once again. As I am writing this post, I am wondering when I will actually post it.  Really what that means is I wonder when I will be able to trust you with everything that we are facing. Will you ask some weird question that leaves me feeling sorry for myself or my baby? Will you share a story of someone that you once knew who had their surgeries 20 years ago and say, "Their scar is barely recognizable." Or will you just say, "Oh, it's just cosmetic." By the way it's NOT just cosmetic. Having a cleft palate, children can face many surgeries, including issues with their hearing and speech. I don't want to tell you how to respond to me, I just want you to know my heart is heavy and what you say can effect me. When Summer's eczema was at it's worse things like, "Oh poor baby" or "I'm glad my child doesn't have that" were some of the most hurtful things people could have said to me and they said them often. I am naturally a defensive person so I had to pray daily that I wouldn't smack the bejeezies out of someone for their comments. The sad thing was that most generally it came from family. Not some stranger.

The glorious thing that I am being taught by God's grace is that I can trust Him to get me through anything. If I can trust in Him than I suppose I should give grace as well and trust in you. I think my biggest fear was I wouldn't hear, "Oh he's so cute!" when we finally posted a picture of him after birth, we would hear something along the lines of, "Oh, what is wrong with his lip?" I have to realize not everyone is going to read this post and I will probably still get those questions and I will probably still cringe and ask for Jesus to help me to respond in a loving way that doesn't show bitterness or anger. This has been a long 18 days trying to figure out how I would deal with telling people. Originally, I was going to wait until our Riley appointment but I am feeling a nudge from God to share sooner and when God speaks, I listen. There's a reason for this, he is an intentional God and makes no mistakes. So here I am, trusting Him to trust you. Please don't make me regret that... haha just kidding! :) Please feel free to comment below. We would love to hear words of encouragement and know people are praying for us! Although, we don't know the extent of Little Man's cleft and probably won't until birth, we still have lots of planning to do before he gets here! So we invite you to come on this journey WITH us!

I've documented some of the emotions of the process from the last 2 1/2 weeks and you can find them here It's A Boy... But, here Our Journey Begins and here Beautiful Faith + Peace. Those should catch you up to where we are at today.

I'm beginning this one with one of my favorite worship songs right now, "Beautiful Things".

All this pain
I wonder if I'll ever find my way?
I wonder if my life could really change at all?
All this earth
Could all that is lost ever be found?
Could a garden come up from this ground at all?

You make beautiful things
You make beautiful things out of the dust
You make beautiful things
You make beautiful things out of us

All around
Hope is springing up from this old ground
Out of chaos life is being found in You

You make beautiful things
You make beautiful things out of the dust
You make beautiful things
You make beautiful things out of us

If you haven't had the chance to listen to this song, I encourage you to do it. Right now it means more than what it use to but when I had some pretty dark moments and I let myself think that I would never be good enough for anyone and this song was a fresh of breath air. But now, it means that no matter what, my son will be beautiful because he is made in Jesus' image.

I was pretty lucky  to come to terms with the diagnosis early on. I prayed for the doctors to not find a cleft at all and if they did that it wouldn't be severe. The most amazing prayer ever made by me or any of our prayer warriors was that we would find peace. By the time I had rested my head on my pillow the night of the diagnosis I felt PEACE. I had faith in my God so deep that I knew he had this just as he has everything else. I knew he was going to use us to do something greater and our little man was a big part of that plan.

At the same time, I vowed to do something good, whether it was this blog or find some way to help mothers grieving some of the same things I was grieving at the moment. The biggest grievance was nursing. I didn't want to give that up. I had nursed my daughter until she was 4 months old and I was sad when I had to give that up because my work schedule was depleting my supply. I was so excited that God had provided me the opportunity to stay home with our new little one so I was making it a goal to get to 1 year exclusively breast feeding. Well, with a Cleft affected palate that dream went down the drain. But Faith is bringing me through. I am going to enjoy this pregnancy like normal, we will have a few extra appointments to attend to educate and prepare ourselves for the cleft itself but other than that I'm just going to complain about my back hurting, eat things that will ensure a few extra pounds of weight and love every movement inside of me.

I'm not sure how to even begin this post because it's probably the most important post someone searching for information will read... bare with me, I'm going to walk you through this step very thoroughly and it will be very detailed. Expect a book. This was "The Big One" for me.

In our Last Post we talked about first finding out that there was a possibility our son was going to have a cleft palate and/or lip. Our next step was to have a level 2 ultrasound with Maternal Fetal Medicine, which we completed yesterday. I was very nervous about this appointment. I had reacted so emotional at our last appointment, I didn't know how I would feel going into this one. Our appointment was in the morning and its really hard for my husband to take off work so I asked my mother in law to attend the appointment with me. I truly believe God puts the right people in your life at the right time and there was no better time for this wonderful woman to be by my side.

We arrived at Memorial Maternal Fetal Medicine and immediately we were greeted by a super nice receptionist. Seriously, I want to just go back there to see her smile and experience her insanely polite and professional demeanor. One day, when this is done, I am sending a thank you card just to her! She calmed me down. I knew we were at the right place. The nurse took me back to do the dreaded weight check and blood pressure. I say dreaded to both because I hate seeing the scale go up and I ALWAYS have to do blood pressure twice because I talk or cross my legs. After finishing vitals, we went back to ultrasound right away.

The ultrasound tech was extremely nice. She got me all comfy and started the process. Let's just say within a few minutes I saw what they were looking for. No one had to tell me. I had already scoured the Internet looking at 2D and 3D ultrasound pictures. I turned to my mother in law and said, "I saw it." The doctor I was seeing hadn't come in yet, so Dr. Donald came in to check in on what was happening with the ultrasound. He asked what the ultrasound tech thought and she responded, "Perhaps." He stayed and watched her look at the face with 2d and she tried for 3d as well. He pointed out a space in the middle of the face that looked like a long crack. Yep, that was what was so prominent to me before they ever said anything. It was confirmed, I was officially entering into the world of being a cleft mama. I felt the badge being stitched on my heart in that very moment.

I think my head was clear and I handled it well. I went into mama mode and asked plenty of questions. Some of them that couldn't be answered and others they answered right away. One big question was, what is an amniotic band? When we were at our OB appointment they thought they saw one along with the cleft. Fortunately, I never looked that up because his description was rather gruesome but informative and gave me something to praise God that my baby didn't have to face. I was lucky right then and there. Now, let me say that our OB wasn't quite as worried about it but what they saw was actually tissue left over from a scary Subchorionic Hemmorage (SCH) I had experienced at 11 weeks pregnant. Dr. Stiver came in eventually and they talked very straight forward about the cleft and said they would want us to go to Riley Hospital for Children and he would coordinate the visit. I knew that going to Riley meant meeting with the team that would be responsible for our child's surgeries and recovery, this is where our journey would begin.

They weren't able to get many pictures of his lip, it appeared small but they couldn't get an actual picture so the ultrasound tech spent some time trying to do that with the 3D scan. However, my son is active and uncooperative and didn't want his picture taken. I wonder if this is a foreshadow to how he will be when he's actually here?!She eventually moved onto the anatomy scan, very similar to the one I had when they first detected the possible cleft. His heart, kidneys, brain, stomach, fingers, toes and jaw were all perfect. Which is a big thing from what I have read, since there are some syndromes that can be associated with a cleft affected baby. However, most generally the cleft is isolated. I didn't look into the syndromes very closely because I was already in fear so we just prayed nothing else was going to be wrong. I had faith they wouldn't find anything on this scan because nothing seemed to be wrong with him on the last one at our OB office. Little Man even gave me a thumbs up, literally. I took that as, "everything is alright mom, don't worry." Thanks little man for that gesture. Made me smile and focus on the important stuff.



Dr. Stiver came in one more time to talk about referring us to Riley and to ensure us that everything would be okay. He wanted to schedule me again after Riley to make sure everyone was on the same page and we were sent off to do our scheduling. Heather, one of the nurses, sat down with us to talk about scheduling our appointment at Riley's. She would be the one coordinating with the staff there. She took down our information and gave us the prints of ultrasound that showed the affected palate. She called later on to confirm our appointment in October. Easy peasy, right?

Having my mother in law with me was the best choice I made. I was able to let my emotions out and talk with her. She was able to put things into perspective for me and was a definite sounding board. My chest was tight with sadness and fear but I knew we had support and I knew God would carry us through. My mother in law told me of a couple with a baby that was going to start some surgeries down at Riley for Cranialfacial abnormalities. They were in our local paper the day before so I took a look and realized although our challenges were great, they were facing something much more. If they could be strong, we could too!

It honestly wasn't the cleft that I feared, it was other people's reactions. I only know one person that has a child with a cleft lip/palate. Miss Lily was adopted from China by my cousin Jody and her husband Rob. Although it sounds the same, it's not. Every cleft journey is different. But Jody had ensured me I was the lucky one because we get to start right after birth which gave us a greater chance at a full recovery. Even with all of the reassurance I was receiving it was just hard for me to share that my baby boy was going to be imperfect. I didn't want pity and I wasn't prepared for a ton of questions. We received so much negative reaction from Summer's skin issues that I didn't want to experience that again. Then again, God places the right people in your life at the right time, I called my friend Jaime to tell her the news and to shorten that conversation just a bit, she basically said its my story and I can tell it the way I want. So I didn't.


My husband and I originally agreed that I would text him what was going on right away so he knew, but I couldn't bring myself to give him news like that through a text message. So, he had to find out via a phone call. Let me just say, I have the most level headed, calm husband ever. He let me know he was worried about sending our son through surgery and he was sad that we were losing the "perfect child" fantasy, but other than that, he was okay. He was being my rock. I know it sounds vain and selfish but no parent goes into a pregnancy willing to take on a child that has to face obstacles. We all have dreams and aspirations for our children and when that changes in an instant, emotions flood and you have to grieve a lot of things. Already being parents of a child that has had to suffer from atopic dermatitis, allergies and seasonal asthma we know what it is like to see our child in pain. We never would wish that for another child, but we still needed to decide how to deal with this together because how we dealt with it would be a testimony of our faith in God. I wasn't so sure I was on the same page as my own husband but I knew God would get me there, I just needed faith....

The day we found out...

"We found out we are having a boy today! Instead of letting the ultrasound tech tell us we had her put it in an envelope and then we brought it home and Summer read, "It's a boy" to us. Tony and I were hoping for a boy since we already have a girl, so we are super excited! At first Summer was a little disappointed that we weren't giving her a sister but now she's super happy! Especially after I told her that I dressed my little brother up in dresses and put makeup on him. Sorry Blake!

Happy news right? Yeah, well let's back up to the part where I almost lost my patience with my OB. Before we could get to the exciting part of gender we were told some news that has us turning wheels and trying to figure out where to put our trust. They told us that the baby possibly has a very small cleft lip/palate. At first I was okay. I didn't want to talk about it because no one could tell me they were 100% sure that they know that my baby had one. They want to send me to a specialist and I am okay with that. But why make a big deal and make me feel like I should be upset or freaking out when I honestly wanted them to stop talking about it and just make an appointment and at the time of that appointment, I would talk to that doctor about it and we could make an action plan. To me it's stupid wasting time talking about something no one knows for sure." - Excerpt from my journal on September 4th.

So all of those feelings on that day had me in compete defense mode. My poor husband... on the way home I cried, screamed and cried some more. I blamed the ultrasound tech, the nurse and our doctor. I needed someone to take the blame because in my head I was blaming myself. Did I do something wrong? Was it because I couldn't take my prenatal vitamins until recently? Of course they were the easy target, they were the barriers of the bad news. So fast forwarding back to the gender reveal... when I got home, I was an emotional wreck. My eyes were red and puffy and I was full of anger. How on earth was I going to put a smile on my face and let our daughter read our ultrasound? I wanted it to be this perfect little moment that we would cherish for the rest of our lives and share with our new bundle of joy when he/she was old enough to hear about his birth story. Well, that's simple. Have your 6 year old daughter give you a hug and make a joke! Summer had me smiling so big that I was ready to do our gender reveal. I will never forget her face and body language when she read, "It's a... boy." Her voice got lower and her shoulders shrunk. So in reality, it is a day we will never forget!


Picture via {Pam's Clip Art}