That was close....no that was God

March 23, 2018 - we arrived at the hospital early before the coffee shop was even open. We checked into pre-op and took our seats. As we waited our dear family and friends began to arrive to support rebecca and us through the day. Nissen fundoplication Is the name of the surgery Josh and I signed off for the doctor to preform on Rebecca. This surgery can be done laparoscopically but Dr. Kays was also planning on doing another minor cosmetic surgery on Rebeccas original scar so he decided to do this surgery with an open cut. The surgery was expected to be about 2-3 hours. So at 4 hours in I was struggling with knowing what was taking so long. At almost 6 hours We finally got word that the doctor was ready to chat with us. We basically threw the baby at the grandparents and “walked briskly” into the consult room. We sat at the table and waited for Dr Kays. When he came in he was almost giddy/joyful. Josh and I were very confused. First Dr Kays explained how upset he was that Rebecca has had to live her entire life this way. He said he was sick to his stomach about had bad her esophagus looked. I immediately started feeling like breaking down but I could tell he had more to share. He then told us that when he opened her up he discovered that her spleen was in front of her stomach (your spleen should be under your rib cage for protection). He explained that if she had had a trauma to the stomach she would’ve died. She would’ve internally bled to death bc no one knew her spleen was there. So he has attempted to put her spleen back into place. For most people this information would’ve been so hard to handle, but all I could think is “I’m so glad Rebecca wanted to have cosmetic surgery” If she wouldn’t have wanted or need it, Dr Kays would’ve most likely done this surgery laparoscopically and maybe never discover that her spleen was out of place. He also discovered Rebecca had a hiatal hernia which he also repaired while he was in there. So I’m praising God for using what was “not pretty” to save a life. Rebecca had a very difficult recovery in the hospital. What was supposed to be a 4 day stay ended up being a 7 day stay. But God is faithful and He helped us to persevere through it all. You may say that was close but I say “no that was God”. 

Rebecca was diagnosed with barrettes esophagus. This is a pre-cancerous condition that most people don’t get until they are 50 or 60. Children just don’t get barrettes. But rebecca was not treated when she was little so the damage was extensive. We continue to pray that no matter what happens, that God will use this for His glory. 

Aril 19th - CDHawareness

I spent most of the day yesterday listening to a live CDH FB broadcast. The purpose of the broadcast was to raise money and awareness for CDH. They interviewed parents of survivors, grieving parents, pediatric surgeons from all over the world and a few celebrity spots. The majority of the time I was crying as these people spoke out loud many of the things we have lived through but never put into words. One mom describing the moment during her ultrasound when it went quiet and she knew something was wrong. A mother whose doctor pressured her to terminate and she chose not to. A dad describing how hard it was for him to be working while mom was at the hospital with the child. Another family rejoicing in all of the things their child has done that the doctors told them they would never do. And mostly a lot of frustrated people who don't understand why CDH doesn't have the same kind of backing as MS and spina bifida, even though the same amount of children are affected by it. In some countries like India, birth rate is much higher and 1 out of every 2 babies are born with CDH! I listened to a grieving mom desperate to have more advancement in her country, they have the facility and resources but no pediatric surgeons to save these babies. But the one thing that broke me down was the mom who described an almost exact scenario as mine. She gave birth at one hospital but that hospital didn't have an ECMO machine so they transported the daughter across town to the hospital that did have the ECMO machine. So while she recovered at her hospital, her daughter was fighting for her life at another hospital. I was away from Rebecca for the first 3 days of her life. I was at St. Joseph's and she was taken to TGH. I never cried about it (mostly because they had me drugged out). I mean like I've NEVER cried about that. So as I listened to this mom's story I just broke down. I couldn't stop crying. It felt so real as if it were happening right now. I just rode the wave until it was over. Hannah came running up to me asking what's wrong. All I could get out was "I'm just overwhelmed". Poor thing was probably traumatized, but boy did I feel better afterwards. I'm sharing all of this so that I never forget to continue to raise awareness. So I remember these feelings that many parents are currently going through.

 I know I haven't done a post-surgery update yet but it's coming.

Guided - Resting in Our Father's Arms

As much as this is supposed to be a medical blog, it is also supposed to be a representation of the miraculous work that God has done in Rebecca's life. Yesterday, while talking to some ladies at church, I was reminded of an event that could only be chalked up to...well God. April is national CDH awareness month. I didn't know this until I was prompted to research it:

THE PROMPT

I don't know what it's like to lose a child. I especially don't know what it is like to lose 2 children. My dear friend Robyn Matthews has unfortunately walked that walk. I remember going to her son Ezra's celebration of life service. We had an opportunity to go up and hug the necks of the family that is grieving. I remember hugging that mama's neck and saying "you've inspired me to be a better advocate for my daughter's medical condition." I'm sure she doesn't remember this bc,well she had other things on her mind that day. But I went home and began to research "CDH awareness". That's how I discovered that awareness month is in June!. Now I'd love to say that I created an organization like "BEAT CDH" and 100s of babies are now alive because of my hard work, but that never happened.

HERE'S WHAT HAPPENED

Since I discovered June was CDH awareness month, I made it appoint to at least start to get Rebecca's story out in Facebook world. Posting about her every April. I received many likes and comments but I wanted to do more. One year the Holy Spirit just prompted me to google search CDH awareness events. Up popped a "survivors march" that was going to be held at Shand's  in Gainesville. So we packed up our family and Rebecca's friend Bethany and we drove to Gville. Turns out this march was being put together by Dr. Kay's staff. During the march we chatted with the staff and began to be intrigued by this doctor that is making huge advancements in the CDH world. I remember driving home and saying to Josh "She needs to be his patient". So that's exactly what happened. He took her on as a "consultant" to her medical care. Because Rebecca already had established doctors he wasn't really open to taking her on fully. So we traveled back and forth to Gainesville for appointments until Shands decided they would change their network of providers and Rebecca's insurance was no longer accepted.

THEN GOD SHOWED UP

We were devastated to find out we would now have to pay out of pocket for every testing and X-ray dr kays would do. He worked with us and allowed us to get some tests done here locally that would be covered and then just have results sent to him but there just didn't seem to be any progress. Then God showed up! We were at Rebecca's post-op appointment from her back surgery. We told Dr Neustadt that Rebecca had been seeing Dr Kays but we had run into some issues. That's when he told us "Oh Dr Kays is moving to All Children's in St Pete". Wait What?!?! That's right! God had answered a prayer we hadn't even been praying. We had been praying that Shands would change their providers again so Rebecca's insurance would be received there. But God did us one more! Now fast forward to today. If Dr. Kays hadn't taken Rebecca on fully last year she wouldn't have had the test done to determine her stomach deformity. If Dr Kays hadn't moved to All Children's in St. Pete he probably wouldn't have taken her on fully. If I hadn't listened to the Holy Spirit prompting to look for awareness events we wouldn't have met Dr Kays. If Kyle and Robyn didn't take their terrible circumstance and use it for good and to glorify God I wouldn't have been inspired to do the same. I could keep going and going. Like If I never went to the bible study at Paige Eavenson house I wouldn't have met Robyn and began a friendship.  If Paige hadn't been faithful in opening her home to have bible studies in this wouldn't have happened. If I had tried my hardest to form the best plan possible for Rebecca, I could never have orchestrated anything close to this. Trust in the Lord with all your heart, and lean not on your own understanding, but in ALL your way acknowledge Him and He will direct your path!

In the Eye of the Storm

This will be two posts in one. Honestly I've neglected this blog because our family was blessed with baby #4 and life is so crazy I haven't made the time to post. But there is a lot so hold tight!

POST 1 - God I know you're faithful but...

One year post-op Rebecca was doing great! her curves remained relatively the same since surgery which was a huge praise. But then puberty hit and a huge growth spurt. Rebecca started complaining of back pain. We took her to the ortho and the x-rays showed that Rebecca's bottom curve (the one that wasn't fused) had significantly worsened. The good news was that her hips are still aligned and her shoulders are still aligned. The doctor reminded us of how many limitations Becca would have if she was totally fused. If she could strengthen her back she would have less pain but be able to live with the bottom curve the way it is. He prescribed her to go to PT which has helped some but Rebecca has struggled to be active. Activity/exercise is what she needs to strengthen her back. We chalked this up to being a "lazy teen" at first but then I started to pay more attention to what was really going on. Rebecca had begun a really strange pattern of eating. Again, I thought it was because she was a growing teen. But really she was refusing a lot of food, eating less. So I made an appointment with her GI doctor. I explained this new struggle and immediately she wanted to see what was going on so she did an endoscopy to look into her esophagus. While Becca was still waking up the doctor sat down with Josh and I. I will never forget what she said:

 "I don't know how our girl is surviving like that. It's really bad, she has ulcers all down her esophagus. If you or I were like that we would be in the ER bc we would think we were dying. She is so strong. We gotta fix this."

Our hearts broke for this precious child of God. We felt horrible that she's been living like this. The doctor put her on 40 mg of nexium to take daily. 6 months later she scoped her again. We thought for sure there would be a drastic change with all this medication. Rebecca was very faithful in taking it. Nope! NO CHANGE! How could this be? So the Dr upped her to 80 mg of nexium a day. 6 months later she scoped her again. NO CHANGE! what in the world is going on? How is this possible. The Dr had no answers for us.

Josh and I prayed and asked God to direct our steps. We knew he had not allowed Rebecca to survive to just let her suffer. We knew He had great plans for her. He had already began a good work in her and He will be faithful to complete it. She was growing closer to Him and had developed a servants heart towards others. We knew God had a plan, we just needed His guidance because we could not see it. We had an appointment scheduled with Dr Kays (he is a doctor we had recently found who has only cared for CDH patients during the past 25 years). Before this appointment I asked God that Dr Kays would be the clarity we needed in Rebecca's treatment. She had seen him a few times before but only for consultation based appointments, due to the fact that Rebecca already had established doctors that had cared for her since birth. At this appointment Dr Kays said "can you release Rebecca to me?" Those words would be our clarity. It was our answer from our Heavenly Father. God you are faithful!

POST 2 - In the Eye of the Storm

So it's been almost a year since Dr Kays has taken over. He has mentioned a Nissen surgery multiple times. Not that he wants to do it, but he thinks she may be in need of it. Again I went "la la la la" in my mind each time he spoke about it because it's not a fun surgery and some pretty serious lifelong side effects. In addition to this discussion, Rebecca was in need of a simple surgical procedure where her original g-tube incision site had grown up near her ribs and was causing discomfort. The DR wanted to make sure she wasn't going to need the nissen surgery before performing this one, because he would rather do 1 surgery than 2. Once again we were on our knees, "Lord we are just asking for clear direction. Please let the results show 100% one way or the other. Please take the decision for this surgery out of our hands. We are weak and need you to take this from us." And once again He was faithful.

The Dr drew us this picture. The top is a normal stomach, the bottom is Rebecca's stomach. If you were to turn this paper upside down you would see a funnel. Every single thing that Rebecca has put in her body her entire life has funneled back up into her esophagus. No amount of medicine can fix this. This is a deformity of her stomach that REQUIRES surgery. If she does not get the surgery she WILL get esophageal cancer sooner than later. Praise God for using this Dr to make things clear for us. Now like I said, we only found Dr Kays a few years ago. He then told us that if she had been his patient from birth he would've done this surgery at around 1 years old. That is how serious this is. And now we are looking at surgery on March 23rd. I feel like I'm in the eye of the storm. It has been some crazy weather lately, and this clarity has been a chance to breath. But now we are facing the other side of the storm.

There's Something in the Air

It's been a few months since I've posted a blog. I prefer to reflect on my situations instead of post in real time, I think your perspective is clearer or at least mine is. I'm not quite ready to relive our  emotions of surgery yet, but I do have some experiences I would like to share.

First of all, having a sick baby, who is your only child, is way different then having a sick child with 2 other children to worry about.

When Rebecca was born we were offered a room at the Ronald McDonald house. We declined it for multiple reasons. One of the reasons was that I felt strongly that since I have a home in Tampa and there are many families from out of town that could use that room, it would be selfish of me to take that room. Now looking back it was the best decision since Rebecca was in the NICU for 3 months, but I'm not sure that I agree with the reasoning I used back then.

This time around the first thing I did after Rebecca's surgery was scheduled was call the Ronald McDonald house. Knowing we would be in St. Pete for about a week and 2 littles that still needed mommy and daddy, I knew this would be the best option.

Fast-forward to July 16th.... Rebecca was out of surgery about 4:30pm and it was going to be a long night in the PICU. Hannah and Leah were only allowed to visit for a short period of time in there and since Leah was still nursing we couldn't ship her off to grandma's house. The Ronald McDonald house was right across the street. We could walk there. I can't tell you how much this blessed our family. Each night Josh would leave with Leah and they would sleep at the RMD house and I would stay at the hospital with Rebecca. He would bring Leah back early in the morning so I could nurse her. This was our routine for our entire stay at the hospital.

During the day I would go over to the RMD house to take showers and freshen up. This is when things would change for me. There is something in the air at the RMD house. A heaviness, a sadness and also a feeling of support. The families that are staying there are not on vacation. Although the rooms are very "hotelish" and nice, when you are there it is very evident you are not at a hotel. It is quiet and somber. Every time I stepped foot on the property of the RMD house, the emotions would start to well up in the pit of my gut. I fought tears every time I was there. Sometimes in the shower I would cave into my feelings and cry. The strange thing was, I wasn't emotional about Rebecca's current situation, I was emotional about the past, the beginning. I couldn't believe we were here 12 years later. She made it! She is alive! All of those things the doctors told us could happen when she was born, she had overcome. It was nothing I had done, only what God had done. Every time I walked up to RMD house I fell at the foot of the cross, grateful and thankful that God loved Rebecca so much. But I also accepted what could have happened and that is why I cried. As a mama you have to be strong. You can't sit around and cry because your baby might die. No! You have to fight! Up until this surgery I had never allowed myself to feel the pain of a mother who might lose her baby. It was sad....that's all I have to say about that.

The Countdown Begins

Well tomorrow is our hospital pre-op at All Children's in St Pete, then two more days until surgery. This past week we've been at youth camp with our church in Panama City Beach, FL. It was great, Rebecca was able to open up to her peers in our church, being vulnerable and sharing her feelings and emotions. We had an amazing week but now it's getting real. While we were at camp I could keep my mind occupied on Rebecca having a blast, being hot, horrible camp food, and anything else other than surgery.
 
Soooooooo what now? Do I break down, cry, feel sorry for my daughter for this horrible thing she is facing? Should I feel sorry for myself for having to walk this path that no mother wants to walk? Do I feel bad for my other two children who will soon be somewhat neglected during the next few weeks? Maybe I should be upset because my husband is taking time off of work unpaid and I should worry about the bills. So many options to chose from but yet today my pastor reminded the congregation that when you are faced with difficulty, you have a choice. You can use it for God's glory or have a "woe is me" attitude. I know I've said this before, but I feel led to say it again, "God is faithful, He is in control and He will be there for us no matter what happens. I will not have a spirit of fear!"
 
For those of you that don't get it I will just say this, "Stand with us in faith that God is in control and if you have concerns offer those concerns up to God in prayer." I'm an open book and I don't mind questions and curiosity, but as far as fearfulness and worries.....ain't nobody got time for that!
 
So logistically here's the plan for those who are interested. Tomorrow we have pre-op, they will do blood work and give us a tour of the hospital. They will determine Rebecca's blood type in case she needs a transfusion on Wednesday. Hopefully tomorrow they will tell us what time her surgery is on Wednesday. We are hoping she is first so please be praying for that! My dear friend Rachel has set up a meal schedule for when we get home from the hospital. Here is the link if you would like to sign-up. Search THARP and password 9212  www.TakeThemAMeal.com

Research queen removed from her throne

***BREAKING NEWS***

The Lord God Almighty has removed the research queen from her throne. No one has been chosen to take her crown. 

Normally I would call myself the research queen. Before I buy something I will surf the net to find every review ever written on the product. Not only do I read all the reviews, but I usually read the bad ones first. I want to know why someone didn't like this product. You see, I figure if I can accept the very worst faults in a product then I can consider buying it. Next, I post on social media asking for references, "hey mom friends, ever use this or that" "ever eat at this place or that place". Finally, I talk to my closest friends and family members about my decision (usually by this point I've already made up my mind, I just need more reassurance that I'm right). 

Well here we are faced with this giant of a surgery and God has told me not to research. I mean, of course I did the basic research to fully understand what the surgery is, recovery and all that. What God told me was, "don't worry, I've got this". I didn't understand at first, I know God's got this, but he needs me to map out the perfect plan right?!? Who knows how to better care for a child than it's mother? So I prayed and waited. I waited to research anything. I waited until God told me it was ok. He is trying to show me that the reason I do so much research is because I need to be in control so I don't get bamboozled. That's really what it comes down to. I'm afraid that if I don't find the right doctor to do this surgery, and something goes wrong, it's my fault. I can't be liable for that!!! As it turns out, I'm not liable. With my husband we've prayed for God's direction, He directed us, and now we just have to have faith and trust that God has got this. So I'm very pleased to announce that I have been dethroned and I humbly bow down at the feet of my Abba Father.