Tuesday, July 28, 2015

My Journey

So I tell you all about my beautiful children and show you their beautiful little faces, but you rarely see a pic of me...or if you do, it is a perfectly positioned shot that doesn't give the truth about how I truly look...or feel.

I finally had a good heart-to-heart...with myself. I wasn't feeling like me. I wasn't looking like me. I just wasn't me. And that wasn't good. It was so easy to let being a WAHM with two little ones and a husband to take care of become everything. To let the roles of wife, mother and employee rule everything. 

I had stopped taking time for myself. I had stopped taking time for God. I didn't have the energy to workout. What I did have was a list of excuses and a mound of responsibilities weighing me down. This, my friends, is a recipe for disaster.

And that disaster was me. I saw what I was becoming and I didn't like it. Something had to change. 

You see, my journey isn't just about getting down to a certain weight...although, I'd be lying if I said if I wouldn't mind having the confidence I had in this pic of Michael and I on our honeymoon...it is about me as a whole.

I want to be close with God. I want to feel good. I want to have the energy to keep up with my kids (If you have ever met Ryder IRL, you know that requires a LOT of energy!). I want to be the best me. I want to stop making excuses and commit to becoming the person that God made me to be. 

So, while I love telling you the stories about my beautiful children, I hope and pray they don't have any more illnesses to follow along with! I know I am not the only one out there that is searching to find and become who they truly are, so why not share my journey as well. 

And here is a couple complimentary cute kid pics just for reading to the end. ;)

Monday, July 27, 2015

Our Miracle Baby - Part 4

To catch up, click here to read Part 1, Part 2 and Part 3.

The first call I made was to Michael. I tried to not be hysterical. I really did. It wasn’t possible though. He tried to be comforting, but that isn’t really his strong suit. Then Ryder got up from his nap, so I let him go and called my mom.

My mom was comforting. She is good at that. We talked and she tried to calm me down, but I still felt like someone had tried to cut me open from the inside. It just hurt. My baby. There was something wrong with my baby girl, and she “most likely won’t die”…die die die….that is all that kept going through my head. I could NOT lose her. She was already a part of our family. We couldn’t lose her.

Next, I needed to call my sister. As soon as I told her about what the doctor had said, her big sister bear claws came out. To say she was furious about the lack of bedside manners of the doctor would be the understatement of the century. I’m just happy for the doctor that she wasn’t at the appointment with me. He would have had to have gone a LONG way to find his head. Then she went into solution mode. We talked about what would be coming up and how to avoid seeing that doctor again and put a plan in my head. I finally felt like I wouldn’t completely fall apart before I finished the drive home.

We didn’t really have any answers at this point. We had to see a Pediatric Cardiologist and get an echo done of her heart before we would know the extent of her heart defect and how much was wrong.

The problem was that the “sweet spot” for her heart being big enough to see and her bones being at the point where the Pediatric Cardiologist could still see through them easily was four weeks away.

Four weeks with no answers.

(To be continued…)

Friday, July 24, 2015

Our Miracle Baby - Part 3

To catch up, click here to read Part 1 and Part 2.

I asked Amanda, “Is there something wrong with her heart?” That is when she told me, 
“Her heart is in the wrong place. It is on the right side of her chest.”

Wait! What?! Why?!

What does that mean for Iyla’s health? Is she going to be okay? What did that mean for the pregnancy? Would she make it to full term? The questions kept flooding my mind.

I asked Amanda what that meant, but she told me all she could tell me was that her heart was in the wrong place, and the doctor would explain everything. She gave me a disc with the pictures and left.

I waited for 20 minutes…alone.

Should I call Michael? What would I tell him? I didn’t know anything. 

I felt so alone and so scared. Something was wrong with my baby girl, and I didn’t know if there was a thing I could do about it. 

After about 15 minutes, I gave in and did what no one should do when they are dealing with a medical condition they know nothing about…I googled it. The articles I read were terrifying.

I was so relieved when the door opened. Finally, I could talk to the doctor!

Nope, the doctor wasn’t available yet, so they were sending me in with the genetic counselor so she could explain things to me while I waited.

The genetic counselor was a nice lady, but telling me every worst case scenario was not a good idea. I found out that Iyla’s condition was called Dextrocardia. I was told that she would have a heart defect…she would require heart surgery and that it would hopefully be after she was born…her right lung would not be able to develop…treatment for her heart defect could be a daily thing and so much more. She said all of this as if it was a done deal. My mind was spinning. How did this happen?!

I just sat there crying trying to remember every word. Oh how I wished Michael was there! He is the one who would ask the questions that needed to be asked. He is the one with the logical mind. He could find out the things that we needed to know. All I could do was nod and cry.

The doctor came in, and I did my best to dry it up. I needed to ask him something! I needed to form coherent thoughts!

I did my best to listen to everything he told me but felt like I was in a fog. 

Then he said, “I believe that your case is manageable.” That sounded promising, but what did that mean? So I asked him what that meant.

His reply? “That most likely that the kid won’t die.”

I couldn’t breathe…and I honestly don’t remember much of the conversation after that.
Die? That hadn't even crossed my mind. Die? My baby girl had something wrong with her that could even bring that word into the conversation? 

How was I supposed to drive myself two hours to get home when I couldn’t even see through the tears?

(To be continued…)

Click here to read Part 4

Wednesday, July 22, 2015

Our Miracle Baby - Part 2

Need to catch up? Click here to read Part 1.

Wednesday came and Ryder was in the worst of a fever episode. Michael had already taken the afternoon off, so I told him to stay with Ryder while I went by myself. Since there was nothing wrong, there was no sense in cooping Ryder up in a car seat 2 hours both ways while he had a high fever. 

I arrived early and noticed that this wasn’t a normal doctor’s office, but seemed to be a specialist’s office. 


I filled out the necessary paperwork, and the lady who checked me in asked me what my doctor had told me.  I told her what I had been told, and she just nodded and told me to be seated. 

I was called back by an ultrasound tech to a very fancy ultrasound room with a reclining chair and huge flat screen on the wall for me to watch the ultrasound…nice! Amanda, my tech, (I LOVE Amanda!) asked me as soon as she walked in the room “What did your doctor tell you?”

Why was everyone asking me that?!

I was trying to not worry. I knew that was not good for me or Iyla. Besides, my doctor’s office said nothing was wrong! So, I repeated to her the line I was given, and she got started. She gave me the usual cute baby ultrasound shots first and then got down to business. 

I had been through enough ultrasounds to recognize the heart and to also realize that she was taking an insane amount of pictures and videos of Iyla’s heart. Again, I was fighting the worry that was growing inside. I figured it would be better to ask than to let my mind run rampant. Wrong.

(To be continued…)

Click here to read Part 3 and Part 4

Sunday, July 19, 2015

Our Miracle Baby - Part 1

So I have delayed in telling Iyla's story because I wanted to finish up Ryder's Fever series. Our little baby girl has a story all to her own though, and here it is...

In February of 2014, we found out we were pregnant with our second child. We were so thrilled and couldn’t wait to share the news.

I needed to find a new OB and asked around for recommendations. We were so excited for our first appointment and got along really well with our new OB.

They had forgotten to draw my blood for the first set of tests and asked me to come back. I ran up by myself while Michael stayed with Ryder. The nurse I encountered was not so pleasant though. She was very insistent that I have extra tests run. I asked her if these tests were accurate and if they came back with bad news if there was anything we could do to help the baby. Both answers were no. So, I declined. She became angry with me. I told her I would think about it just to get her off my back and called later that afternoon and left a message that I had still declined. We didn’t see her again, and I couldn’t have been more relieved.

At the next appointment, the doctor brought up genetic testing. We declined. She pushed for us to get these tests done. And Michael put it perfectly, “We are Christians and want this baby no matter what. No matter what the test results would say, we would keep the baby.” The doctor did admit that the test results were not always accurate and that the 20-week ultrasound would be the confirming test if there was a positive result. Again, I was frustrated because this doctor’s office acted as if I was a bad parent because I didn’t want testing done that would change nothing.

(Side Note: Since our pregnancy, I have a friend who had the testing done and it came back with a positive result for Trisomy 18. They were told all the heartbreaking news that goes along with this condition in a baby. In the end, the ultrasound proved the first test wrong and her beautiful little girl is here and absolutely perfect. This friend went to the same doctor as I did, so I know there was intense pressure for the testing to be done. It makes me so angry to think about the weeks of stress and heartache caused to my friend because of a test that is unreliable, but pushed on pregnant families. But I digress…)

We had a cruise coming up that would take us into Mexico, so we had an ultrasound done before we left just to make sure the baby was okay. Everything looked great, but the baby was stubborn, so we didn’t get to find out gender.

While on vacation, something happened that was cause for concern. (Ends up I just had a HORRIBLE case of food sickness.) So, I had another ultrasound as soon as we got back even though I was scheduled for my Level 2 ultrasound the next week. That is when I found out that we were having a girl…even though I was convinced I was having a boy…and that she was doing just fine. Turns out that I am not one of those women that “know”. I was dead wrong with both kids! But the doctor told me she was positive we were having a girl. So that is when we were able to put a name with our baby…our Iyla Jane (pronounced Eye-la).

We went in for my Level 2 ultrasound the following week. A Level 2 ultrasound is done around 20 weeks and is when you usually find out gender. The real reason for this ultrasound is to check how the baby is doing though. They measure EVERYTHING. My kids were both extremely active in the womb (and are still to this day), so they are a little hard to measure unless they are sleeping. So I didn’t think anything of it when the girl was taking a little longer with Iyla’s ultrasound than I remembered with Ryder’s.

She even called in an extra tech to try and get a picture of Iyla’s heart. They told me that the baby was in a weird position, so they couldn’t get a good picture, but would do the best they could. This was on a Thursday.

I got a call the very next day from my doctor’s office. They had an appointment scheduled for me in Indy on Wednesday to have another ultrasound. I asked if there was anything wrong. She said, “No, they just have better equipment in Indy, so they can get a better picture of her heart.” Naively, I believed them.

(To be continued…)

Click here to read Part 2Part 3 and Part 4

Ryder's Battle with Fevers - Part 16: Life After Fevers

Need to catch up? Part 1 - Part 2 - Part 3 - Part 4 - Part 5 - Part 6 - Part 7Part 8-Part 9-Part 10 - Part 11Part 12 - Part 13 - Part 14 - Part 15

So we are three months out from surgery. I am SO thankful to report that we are still fever FREE!

I have seen this smile more these days without a break for fevers.

We have also had a major improvement in behavior since I last wrote. Don't get me wrong, we still have a three-year-old, but he is back to being my three-year-old that knows how to listen. He has even learned when it is appropriate to apologize!

One of the great things that may seem small to other people that we have been able to do in the last three months is we were able to have his birthday party without fear of a fever ruining it!

Another great thing that we have been able to do is go and enjoy activities on the spur of the moment and weekends with family without fear of a fever popping up in the middle of it! Like trips to Spring Mill to play in the creek...

Visits to Newburgh to visit the inlaws and go fishing at their pond/lake...and touching his first fish :)

Life has just been wonderful.

We still keep a close eye on him. Red cheeks and fussiness were always some of the first signs of his fevers. With it being summer, red cheeks come often with our skin tone, so I catch myself touching his neck to see if PFAPA is rearing its ugly head again. If Ryder is extra squirming, I tend to worry that he is feeling achy. However, I know that worry is not from God. So I have determined to not let Satan take my joy in this season of no fevers! Even if the fevers do return, I know that God is with us. So I will praise Him while we are enjoying fever-free days!

While I wouldn't wish PFAPA on ANYONE, I am thankful for the things God has taught me through being a Momma of a child with PFAPA. It has taught me to be grateful for the little things. It has taught me that even if on a particular day Ryder is difficult, it could be a lot worse. He could be enduring yet another fever, but he is not, so I am grateful.

So it is with this grateful, thankful heart that I close this series on Ryder. Praise God from whom all blessings flow! We are fever-free!!!!

p.s. For some kids, the fevers leave for a time but then come back. If that ends up happening with Ryder, I will let you know. Will you pray with me that I never write Part 17? :)
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