Saturday, August 12, 2017

You've got to know where you've been to know how far you've come

Sometimes you have to know where you've been to know just how far you've come. Tonight I ran across these papers. I keep them in a clay jar that I have recipes in, so every now and then, I see them in there and I pull them out to look at. 

The first one was printed out by Emmie's nurse on the heart floor in March of 2010. I can still remember that day like it was yesterday.  I remember looking at that piece of paper and lots of thoughts running through my head, I didn't say anything out loud, just stared at it. I was the mom that couldn't remember to give my kid a vitamin. When they were sick and needed antibiotics, I would forget to give it to them! I'm staring at this med list, knowing my daughters life depended on me being able to follow it to a T! The pit in my stomach was indescribable. How was I going to do this? I desperately wanted out of that hospital, I wanted my life to go back to normal, I anted Emmie's life to go back to normal. But I didn't think I could do it, I wasn't sure I could handle this, maybe the hospital was the best place for her. Those thoughts of doubt that creeped in, I know was Satan. But in the quiet moments I could hear the voice of my Lord, telling me to be still and know that I am God. He gave me this child, and he would give me the strength to care for her the way she needed to be cared for.

Fast forward 7 years! If only I knew then what I know now! Normal? What is that anyway? HA! We found a new normal, one that involved lots of trips to Riley, and now MOTTS. A normal that included lots of medication, a back brace, surgeries, tests, scans, ultrasounds, xrays, MRI's. The latest also includes oncology appointments, and cancer scans. But I'm reminded every day of how unique Emmie really is, and how God knitted her together in such a fabulous way that no one can predict what will happen next....... or what she will do next, much less what she will say next!

Emmie is doing fabulous! She is cancer free!! She has not had to do chemo or radiation. She is getting scans every 3 months, and as long as those remain clear, she will not have to do treatments. She is currently off ALL medication!!! That is the most amazing thing ever! It was a day I never thought would happen! We were all so thrilled for her! 

She is seeing her back doctor for scoliosis. It has gotten worse, she is getting fitted for a new brace, and having an MRI of her back in a few weeks. We will also see the neurosurgeon again about tether cord surgery, which will hopefully happen in November. After that, she will need one more back surgery to correct the curve in her back, and then hopefully we will be all done with surgeries!

She continues to have check-ups with cardiology and nephrology. All seems to be going fine with her kidneys and heart. Her aortic stent will need adjusted again, and that is something that will continue to be adjusted as she grows.

She had her 6 month post op check up at MOTTS a few weeks ago and they were very pleased with all of her progress! She was given the all clear by her vascular surgeon! Praise God!

All in all, things are great! Will she continue to need doctor visits and surgeries, yes, but when I look back at just how far this little girl has come, I'm OK with where we are. She is my warrior princess! She amazes me every day!!!

Thank you for following us on this journey! And thank you for the support and prayers!

Saturday, February 4, 2017

7 years after the first surgery....

This is what I wrote last year on this day. It is now 7 years.
February 4th

7 years ago today at 7:30am, I handed Emmie (my 12 month old baby) to a nurse, watched them walk away, and balled my eyes out! That was by far one of the hardest and most challenging days of my life. I had no idea that we were stepping into a new world, one that comes with lots of ups and downs, medications, dr appointments, blood pressure checks, blood drawls and procedures. I thought Emmie was having a one-time "fix", and within a few weeks, everything would be back to "normal". (What is normal anyway??)
2-4-10, was just the beginning of a lifetime journey for Emmie and our family. As I look at my posts from that day, it was clear that things didn't go as planned from the beginning. Things didn't go as I had planned, or the doctors had planned, but they did go as God had planned. I have never felt more comforted, more held or more peace from God than I did on that day and the days to come. That doesn't mean I'm ok with what has happened and continues to happen to my baby girl, but I'm at peace with it. I hate the struggles in her life. I hate the medication that she takes, I hate the continual dr appointments and surgeries, but I don't hate God. He made her this way for a reason, and I trust in that. He loves her more than I do, and I trust in that.
2-4-10 was also the day Elise was born. On the other side of the world, in a remote area of China, called Poyang, Elise was born. While I was stressed out, a crying emotional mess, God was blessing me in ways I didn't know.
I serve an awesome God! And I trust in his word.

Just when I think I'm beginning to get a handle on things, we get another curve ball. Even looking at what I wrote last year, I realize how much has changed. Last year, we didn't know Emmie was going at have a 10 hour surgery in Michigan. We didn't know she was going to be diagnosed with cancer. We didn't know just how vast her renal arteries, aorta and kidney deformities were. It still makes my head spin when I really think about everything that has happened in the last year. 

But one thing remains the same. I still believe and trust in God. We trust Emmie in his care. I truly believe he lead us to those doctors in Michigan, and they quite possibly saved her life, or at the very least altered the path of her future. She has a bright future ahead. Does she require more surgeries? Yes, at least 1 and maybe 2 for her back. She will also possibly have her aortic stent adjusted, and possibly a new one inserted when she has reached her adult height. She still requires lots of doctor visits and lots of monitoring, but she only requires ONE medication!!! God has brought her and us again through some very dark and scary times. And I felt the same way during this surgery and recovery as I did 7 years ago. I have never felt more comforted, held and at peace than I did during those 2 weeks. I'm still not ok with it. I still do not like it, but I am at peace with it, and I do not hate God for making her this way. Time will tell, but I know God is molding her into something great, and all of this medical stuff has something to do with it. 

Every time I look at the miracles of Emmie and Elise's lives, I am reminded of God's hand in my life. He blessed us with this beautiful baby girl on the other side of the world, and it was the very day we were beginning this life long journey with my other beautiful baby girl. Only God can orchestrate such an amazing masterpiece. You can't make this stuff up ,and you certainly can't plan it yourself!

My updates from February 4th 2010....

Saturday, January 28, 2017

2 Months Post Op and So Much Has Happened!

Today is January 28, 2017. We are exactly 2 months out from Emmie's major vascular surgery, with aortic patch, renal reconstruction and nephrectomy. So much has happened in the last two months. At times it feels like a roller coaster, so many ups and downs! Well let me tell you, I'm ready to get off the ride!

The biggest and most exciting good news we have is that Emmie has not started chemo!! We sat down with her oncology doctors the first week of January, fully prepared to hear the details of her chemo regimen. Instead we heard such amazing news. Truly an answer to prayer. "Emmie does not need chemo right now!" It seems that after reviewing Emmie's case in much detail, which included a meeting of the minds (where the entire oncology team sets down to discuss difficult cases, this is not the first time Emmie has been the topic of one of these meetings, and not the first time she has been called a "difficult case"), looking back through Emmie's scans that go all the way back to February 2010, and sending her records & pathology reports to a Wilms tumor expert in D.C., the conclusion was this.......
Emmie's Wilms tumor has likely been slowly growing on her left kidney since the age of one. In 6 years it had only grown to the size of a baseball, and never spread outside of that one tumor. We believe that God protected our daughter in ways only he can do. That portion of her kidney received very little blood due to the tiny thread like artery that was feeding it. Lack of blood flow, meant lack of growth. It also is what kept doctors from suspecting the "suspicious" looking upper pole was a tumor because her blood work never showed the typical signs they look for when cancer, or an infection, is present in the body. Wilms tumors are also typically diagnosed between age 2 and 4, and they are almost never seen past the age of 8. Given all of this info, the oncology doctors decided not to start chemo right away. We are instead, scanning Emmie every 3 months for the next 2 years. If something shows up, we will start chemo and radiation immediately. At the 2 year mark, as long as nothing has showed up in her scans, we will scan every 6 months until she has had 5 years of clear scans.

Its hard to put into words the feeling of joy I had when I found all of this out. It's also hard to put into words the gravity and weight I felt when I thought I was going to put my daughter through chemo. These are emotions a mother doesn't prepare for. You aren't given a manual about babies and kids when they are born, and if you were it certainly wouldn't include a chapter on "how to handle EVERYTHING when your child gets cancer" because you just aren't supposed to have to do this. But here we are, killing it!

In other news with Emmie.....

Her blood pressure continues to stay at a normal level, in fact lower than it used to be! She's averaging 97/54. We used to try to keep her around 110/70 and that was on 6 medications. Now she takes 1 BP med, and it is 1/2 the dose she used to take. We are hopeful that at her next appointment with her nephrologist, they will let her come off the med and see if it stays under 110.

Her blood clot is gone! YIPPEE!!! No more twice a day shots!

The renal stent that was placed during surgery was removed a week ago. She did fabulous during that procedure!

Her iron is low, which didn't surprise me. She did this after her first heart surgery too. She has a tendency to not eat a lot but drink a lot of milk. Too much milk and not enough food causes the milk to absorb the iron. So, she's taking an iron supplement, which is helping a lot with her energy levels. We are hoping her body will reset itself by April and she will come off the iron then.

Emmie went back to school! She made it through a full week of school this week! YAY! She's still on a lot of physical restrictions. She's not allowed on the playground, and she can't do PE class. But over all, she is doing really well! And I think she was even happy to be back in school! (If you know Emmie, you know she's a home body and wants to be home schooled! However, she missed her friends!)

Going forward, Emmie will continue to be seen by oncology for 5 years. We are praying for clean scans for 5 years! She will continue to have nephrology and cardiology checks every 3-6 months. She will also follow up with her surgeons in Michigan at the 6 month mark, and the 1 year mark.

The next major item up for Emmie is having the tether cord surgery, which will hopefully correct some of the scoliosis. That will probably take place in the fall. We have also started the genetic testing required to find out if Emmie has neurofibromatosis. If she does in fact have this, then there will be additional doctors and scanning done to check for other tumors. However, typically with NF the tumors are benign.

Even though I would like off the roller coaster ride, I know this ride is far from over. Emmie has a life time of ups and downs medically, and I will never leave her to ride alone. Just as God will not leave either one of us. Deuteronomy 31:6 Be strong and courageous. Do not be afraid or terrified of them, for the Lord your God goes with you; he will never leave you nor forsake you.

Thank you for reading, but more importantly thank you for the overwhelming support! We have had so many people bring food, help with kids, help financially, and praying for us, the support has really been a testament to God's people working together as the body, hand and feet of Christ. Thank you just doesn't even feel like enough! Please continue to pray for us as we move forward through all of this medical stuff! Pray for clear scans and answers for Emmie.
 Emmie at Riley Hospital the day we found out that she would not be doing chemo!

 Emmie with her daddy and sister, Elise, going to the Princess Ball
(AKA, daddy-daughter dance)

Emmie turned 8!!!! The magic number for Wilms tumors to not return!

Saturday, December 17, 2016

Where we are right now.....

Some updates on Emmie......

We've been home from the hospital for 9 days now and Emmie is 2 weeks, 4 days out from surgery. She is such a trooper. Her ability to work through her pain and overcome obstacles in her way is amazing to watch. It's also sometimes painful to watch. As her mommy, I want to do it all for her, and I can't.

Her aortic patch looks great! Dr. Coleman made her aorta the size it needs to be when she's fully grown, so she will grow into it, and not need to have it redone EVER!

Her right renal bypass looks good too. There's just this one area of the lower artery that looks like there is a blood clot. It's effecting the flow of blood to the lower portion of her right renal artery. So, she had to be put on a blood thinner to prevent the clot from getting bigger, and allow her body to absorb it.

Emmie had a check-up with her nephrologist (kidney doctor) last Friday. They were super impressed with her recovery. They were also very pleased with the fact that she's now only on one blood pressure medication and it's half the dose it used to be. We are monitoring her blood pressure and checking in with the nephrology doctor via email weekly. They do think its possible that after the blood clot in one of her renal arteries dissolves, her BP numbers could improve, maybe even enough to come off of all BP meds.

Here's where we are right now......

Emmie's blood thinner medication is an injection. This means Tom & I have to give Em a shot twice a day. She's handling this really well! Probably better than me or her dad! Thank goodness the needles are super tiny, and her medication does is very small, so it's a quick shot!

The word cancer and your child's name in the same sentence is something that shakes you to your core. It's everyone's worst nightmare. And its happening to my daughter. I don't even really know how to describe the feeling, and it's not something I would wish on anyone. We've had a few weeks to let this information sink in, and I can't say it's gotten any easier. I just about had an anxiety attack/nervous breakdown on Monday when we went to Riley Oncology for the first time. We had our first appointment with the oncology doctors. They are pretty sure she's stage 1, since her lymph node tested negative for the cancer cells. This will be confirmed on January 3rd when she has a CT scan of her chest. Emmie has what is called a Wilms tumor. On January 10th, Emmie will have a port placed in her chest, and she will receive her first round of chemo.

Chemo will be 18 weeks long. We will have to go to Riley once a week for an infusion. The regimen is pretty light compared to some. We will need to be there for an hour week 1, then week 2 & 3 will only take about 15 minutes. It starts over on week 4, and the 3 week cycles will continue for 18 weeks, or 6 cycles. She will finish chemo in May, and we will be having a very big PARTY!!!!

While non of us are happy about this diagnosis. We are very happy about a few things. One, we are so grateful that God intervened and allowed us to find this cancer before it spread. Two, we are so very happy that it is a "favorable" type of kidney cancer, and that she has a very high chance of being cured and going on to live a full life. It has about a 95% curability rate! Three, we are ever so grateful that she is doing so well!

Her recovery has been somewhat miraculous. She was wowing several doctors and surgeons in Michigan. One day while Emmie was still in ICU (the day before they moved her out) I asked the ICU team a question (can't even remember what I asked) But Dr. Tim looked at me and said "Well, we don't really know because Emmie isn't following the rules about how this is supposed to go." I said "Welcome to my world! She's been like that since birth!" He laughed and said "Good luck when she's a teenager!" This same doctor came into Emmie's room multiple times to talk to me. He was always amazed at Emmie's quick progress. The day we left the hospital, Emmie's surgeon, Dr. Coleman, looked at Em and said "Emmie, can I tell you something? You are the strongest little girl I've ever met, and I've operated on lots of little girls and boys, but you are the toughest, strongest one. I have no doubt that there are big things in store for you."

The journey has been long, and at times hard,and it's not over! But I look at the beautiful little girl sleeping beside me and I can't help but think God is cultivating her for something bigger than I ever could have imagined when I first held that little baby girl almost 8 years ago. I think he's cultivating me too. I'm not the same person I was before Emmie's first heart surgery. I'm not the same mom. I'm not the same friend, or wife, or sister. Each procedure, test, stent adjustment, surgery, diagnosis, medication change, doctor appointment, shot, blood draw, they all change me. Some of the change is for the good, but I know some of it has jaded me. It's a daily struggle to stay positive and keep my eyes and heart focused on the things that are important. I know that God has a plan for Emmie and me.

"For I know the plans I have for you" declares the Lord, "Plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11

I know this goes without saying, but please continue to pray us through this journey. Your continued support and prayers have gotten us this far. It is overwhelming to see the hands and feet of Christ at work though our friends and family and church family.

If you'd like to help us with the ongoing medical bills, a go fund me page was set up by Emmie's grandparents.

Saturday, December 3, 2016

December 3rd 2016 Post-Op Day 5

My last update was Tuesday, the day after Emmie's big surgery. Emmie's surgery went great. All three surgeons were beyond thrilled with the outcomes from the surgery. They have basically attained the impossible by giving Emmie a somewhat "normal' vascular system.

Emmie continues to amaze the doctors, staff and her parents! She is the toughest little girl around. All the doctors have called her a rock star. She is so brave in the face of such huge obstacles.

From the beginning we were told that it would take several days for her digestive system to "wake up" because they cut the blood supply to several organs during surgery, they also move things around to get to what they need. The digestive system, particularly the pancreas, doesn't like this. What we didn't know is that the average time spent without food or water for these kids is about 7-10 days, and that pretty much none of them eat before that 7 day mark, and some kids are stuck in the hospital for a month or more waiting for their digestive system to wake up. We were also told to expect her BP to go back up and that she would need an IV blood pressure medicine within about 24 hours after surgery. We were told to expect her to spend a week in PICU.

What actually happened for Emmie wasn't anything like the events described above. The doctors are calling it amazing, incredible and unheard of. I'm calling it the power of prayer!!! Emmie came off the vent about 4 hours sooner than anticipated. From the beginning the doctors were impressed with her numbers. All the things they were checking such as creatin, BUN, potassium etc. All numbers were consistently improving with every blood drawl. Her BP stayed in the normal range day after day making the doctors eat their own words when she never did go on an IV blood pressure med. She has now started an oral BP med, and will go home on 1 med that is 1 time a day (compared to the 6 meds 2 times a day that she did before surgery). But the most amazing thing was that Emmie started having "digestive' sounds on Thursday, only 3 days after surgery. She had a bowel movement on Thursday afternoon too! So her surgeon said ice chips and gum on Thursday were fine. On Friday she got to start a liquid diet! All the ICU doctors were amazed. She's 4 day's post op and she's on a liquid diet! One ICU doctor told me "Emmie's not read the rule books about how this is supposed to go! She's doing everything ahead of schedule!" Her nurse on Thursday also told us that she has NEVER had a "re-vasc" (what they call kids who have vascular surgery similar to Em's) kid ask to get out of bed. She says these kids are in so much pain they NEVER want to move. Emmie was asking to get out of bed!!

Through all of this, we saw God's hand on our daughter, and on us. We felt the power of prayer. Things I was asking people to specifically pray for, and things I was specifically praying for were being answered. Was it difficult? ABSOLUTELY!! I cried, Emmie cried, Tom cried. It was hard. It's still hard. 

In my last post I said "now we start the next phase of hard. Because, really every phase of this has been hard." What I didn't know, was that there was going to be a whole new level of hard. We were completely in shock when our team of doctors and surgeons all came into Emmie's room together on Wednesday evening at 5:30pm and relayed the most difficult news I've ever heard. "The mass we removed from Emmie's kidney was a malignant tumor called a Wilms tumor. It is a form of cancer......." To be honest, I don't think I heard much else. I heard malignant and cancer, and I heard my child's name in the same sentence. Every parents worst nightmare. The doctors were truly just as shocked as we were. No one saw that coming.

Tom and I took about 24 hours to let this new information process in our brains. We cried a lot, and we prayed a lot. We told only immediate family and our pastor and a few close church members. Once we knew when we were meeting with the oncologist, we asked for prayer from the church elders. Waiting on that meeting seemed like an eternity. In the hours leading up to it, I became more anxious. I wasn't sure I wanted to hear any of it, yet I knew I had to. The oncologist gave us some positive news though, at least as positive as it can be after receiving a cancer diagnosis. Emmie has what is called a "favorable" form of kidney cancer. The believe they got all of the cancer by removing the upper pole of her left kidney, however scans will be necessary to ensure that is the case. The vascular surgeon told us that she looked, rubbed and felt each of Emmie's organs to make sure they all looked and felt normal. She did not see anything alarming. Everything looked just as it should. The urologist is quite confident that he got the entire tumor and left nothing. He also took a biopsy of a lymph-node while in surgery, which came back negative! They believe she is Stage 1 or Stage 2, which has a 95% cure rate. If they found spots in her lungs, which they do not think is the case, she would be considered a Stage 4. Even at Stage 4, this type of cancer has an 89% cure rate. Regardless of the Stage they put her at, and even if her scans prove that there is no cancer anywhere else in her body, she will still go through 6 months of chemotherapy. While I can't stand the thought of it, I'm happy that what she has is treatable and curable. And in the last several days I've heard of multiple success stories of kids who were diagnosed, been cancer free ever since and are now in their 20's. Even her surgeon told us yesterday that we are now a part of her family. She want's pictures and updates of Emmie doing sports as a teenager! She said I have no doubt that Emmie will go on to do great things as an adult. 

Another way God has showed himself to us in these hard and stormy waters is that quite possibly Emmie's deformities saved her life. Wilms tumor is a very slow growing cancer, and it's quite possible that it has been there since she was 4 years old. At the age of 4, we had scans done of her kidneys and renal arteries, in the hopes that they could stent her renal arteries. They could not be stented, but those scans revealed a deformed upper pole left kidney. The urologist actually used the term bumpy and cauliflower like. They thought it was just deformed tissue, which is also what the surgeon's at MOTT's thought until they opened her up. It has grown since she was 4 years old, but not that much. The doctors say it's possible that the deformed tissue and lack of blood flow to the kidney could have prevented it from growing. I think it was God's unique way of protecting Emmie's body.

I have said all along that I felt God brought us here for a reason. Now we know undoubtedly so! I thought we were here to get Emmie off meds, which does seem to be happening, but now I know we are here to find a cancer that might not have otherwise been found. The surgeon who asked to pray with us before surgery was also the surgeon who had to tell us Emmie had cancer. He prayed with us after telling us that horrible news. Our night nurse that night was also a christian who goes to church with the surgeon. He also prayed with me in the middle of the night. God has seen me at my darkest worst hour, and he lifted me up in the midst of my pain. He surrounded me with complete strangers that were able to console and pray with me.

Obviously the next 6 months or so aren't really going to be any easier on us or Emmie than the last few months leading up to this point. In fact, I'd say we are entering something even more difficult than the phase we are leaving, however, I know my God will not leave me or forsake me. He will not leave Emmie either. We will get through this together and with the support of all of you.

As for right now, Emmie is doing better than expected. We moved to the renal floor yesterday. (3 days ahead of schedule) She's been up and moving around today, doing crafts with her sister and cousins. She's eating! Not much, but she is eating. Her pain has been pretty well managed. We are transitioning her now to oral pain meds and weening her off the IV meds. We will still be here for at least another 5-7 days. She will have some imaging studies on Monday to ensure the surgery was a success, so we will have new images to compare to the ones we got in October. I'm excited to see what that will look like. Emmie is enjoying all the gifts and surprised that have been brought to her.

Please continue to pray for us. We are entering a new phase of hard. As we get more info about the stage of cancer, treatment plan & timing we will pass it on! Thank you for your continued love, support and prayers!

I can do all things through Christ which strengthens me. Philippians 4:13

Tuesday, November 29, 2016

November 29, 2016 Post-Op Day 1

So A LOT has happened in the last 48 hours......

 We checked into CS MOTT Children's Hospital around 9:30pm on Sunday night. I think we got about 2 hours of sleep on Sunday night. Emmie was determined to eat right up until midnight, so at 11:00pm we are eating mac-n-cheese, yogurt, pretzels, apples, chocolate milk. The girl was literally counting down the minutes! At midnight they came in and did blood work. Around 2:30am they came in to put her IV in. And we had to be up at 5:30am.

Monday morning at 7:00am they took us down to the surgery pre-op. We met with all the surgeons and anesthesia team. One really cool thing that happened, was when we met Dr. Parks, the urologist responsible for her partial nephrectomy. He said to us "I have a habit of praying for my patients before surgery, would it be ok if I prayed for your daughter?" We have never had a surgeon ask us that. Of course we said yes, and we prayed with Dr. Parks over our daughter. God is good all the time and he places people in our paths. I firmly believe that God brought us here to this team of surgeons.

Surgery was LONG!!! She was taken back around 7:45am. That was hard for me. The separation is always hard. I start to have all these second thoughts, like what did I just do to my kid! I know that's Satan creeping in. We received updates throughout the day via text and phone calls. Everything seemed to be going according to plan.

Around 4:45 we received notice that one of the vascular surgeons was ready to update us and we needed to return to surgery. We consulted with Dr. Eliason. Let me say, it was one of the most uplifting post-op consults we have ever had! He said everything up to this point went better than planned! The vascular part is done. Her aortic patch went well. Her right renal reconstruction went well too! They were able to construct a normal sized artery on the right side, which is amazing! They made her aorta the size of a teenager so she will grow into it, so no need to go back in and patch her aorta again. Her pressures were good the entire time, no complications what so ever! He even thinks it's realistic for her to be medication free within 6 weeks! Praise God!!!

Around 6pm, Dr Parks showed up in the waiting area to talk to us. His part, which was the last phase of the 3 phase surgery was complete, which meant surgery was done! They were closing her up. He said Emmie did great! And he was really glad they decided to take that upper pole out. He said it was a hard cauliflower like mass, the size of a baseball!! It was providing her with no good kidney function, but quite possibly contributing to most of her blood pressure problems. They have sent it off to pathology to see exactly what it was. We told our crowd of family that Dr. Parks was the one who prayed with us before surgery. We had a nice conversation with him about his mission work in other countries, and how a few years ago he felt convicted about praying for his patients in the states like he does in other countries. Instead of praying for them in secret, he decided to start asking families if he could pray with them. The amazing thing is, he's never had someone tell him no. God is doing amazing things with Dr. Parks and his gifts in medicine.

Our final consult of the day was with Dr. Coleman. That lady looked exhausted. She was by Emmie's side doing very tedious work for hours and hours. She was there in the beginning, and she was the one who closed her up. A long day for her. She is saving lives and I am so grateful she was able to help my baby. I can not say enough good things about her. She's so polite, soft spoken, and nothing but good things to say. She was so happy about the outcome of Emmie's surgery. Everything went better than they planned. No complications. I will never be able to thank her enough for her work on Emmie. Because of her, Em could likely be medication free! She will likely live a very normal life with little to no complications from her congenital defects.

We were able to see Emmie for the first time around 7:30pm. She was resting peacefully, still intubated, which we were warned about. She looked good, a little swollen, but over all good! Unfortunately, (or maybe not, it's hard to tell) Her feisty personality started showing through! She fought the tubes, tried to extubate herself, bit down on her airway. It was a nightmare. The nurses assured us that this was actually good. Feisty is good, and the fact that she came out of sedation faster than anticipated meant her kidneys were working well.

It was a rough night! She woke up several times, each time a little less traumatic than the last. Each time a little more calm than before, but by 2:30am the nurse said it wasn't good to keep sedating her and making her stay on the vent when she was fighting this hard to come off, so she set the process to extubate. At 4am they finally took her off the vent. She was much more content with out that. She was able to talk to us, which was good. She was still very loopy, but rested much more peacefully after that.

Now we start the next phase of hard. Because, really every phase of this has been hard! Her digestive system is basically asleep, which is normal. We were told all of this ahead of time. She can not eat or drink until Thursday. We are giving her a little sponge of water to wet her mouth, but that is it. It's really hard for her, and hard on us. The kid was asking for chocolate milk while still on the vent! She was mouthing it to me! ugh! other than asking for me or Tom, chocolate milk was what she wanted! It's like her coffee, and we can't give it to her. So hard. Her pain is being managed well. She is on a morphine drip, and unless they move her, she's ok. It's really hard to see her in pain though, and they have to move her around to keep from getting bed sores. Tough stuff.

Please keep praying for us. Pray that God will sustain us during these difficult hours. Pray for Emmie to be peaceful and comforted, and rest easy during the next few days. Pray that she continue to surpass expectations and her digestive system will wake up sooner rather than later!

Casting the whole of your care (all your anxieties, all your worries, all your concerns, once and for all) on him, for he cares for you affectionately and cares about you watchfully. (Ps 55:22) 1 Peter 5:7 AMPC

Friday, November 25, 2016

Thankful Hearts

We have a lot to be thankful for this year. Our family, friends, and church family have gathered around us in a show of support that is truly humbling. God had blessed us with such an amazing support system. I do not feel worthy.

Our family has rallied around us to be at the hospital with us, Tom's mom is coming all the way from Florida! My aunt is also coming from Florida to stay at our house to care for Blake and Elise. My sister is helping with kids, and helping my aunt learn the routines! My parents plan to drive back and forth to Michigan several times to help us where needed. My brother and sister-in-law have also offered to help where needed and will be at the hospital. Tom's brother and sister offered to drop plans and be here if needed.

Our church family has been amazing. They have offered so much to us. Our pastor and one other church member will be going to Michigan with us, and bringing the boys back home on Tuesday. Two small groups at church took up love offerings for us, and another small group took the time to write us encouraging words and Bible verses on note cards to help keep us positive throughout the next few weeks. Our small group is providing meals for us when we return from the hospital. We also have a group of people surrounding us on Sunday to pray over our family before we head to Michigan.

My gym family, and yes they are family too! My training studio is so much more than a job to me. My clients become my friends. I become involved in their lives, and they in mine. They care for me and my family, and I don't know where I'd be without that support. When I first set out to be a personal trainer, it was something I could do while staying home with the girls. I quickly realized that God had more planned for me than just training some people. I never saw myself opening my own studio, I never saw it moving out of my house, and I never imagined it would grow into not only a training studio, but a ministry. Lots of times, I find myself being more than their trainer, I become a counselor, a friend, a shoulder to cry on, someone they can count on to help them out. Well, they have returned the favor in a big way. They took weeks to collaborate gifts for all of my kids, gift cards and gifts for me and Tom as well. It was so sweet, and so unexpected! They also want to do meals when we return from the hospital. And one special lady already made up her "made from scratch" meatballs and marinara and froze several of them for my aunt, or us to use in the next few weeks.

There are countless others who have offered up support. Past training clients who are still friends, high school class mates, family friends who have all dropped off gifts, or sent them via amazon!! But its more than the gifts, while they are very nice and will truly help alleviate the financial burden, and will help Emmie recover by giving her things to entertain her while she's down, it's the outpouring of love on my family. All the kind, encouraging words and the prayers that I know are going up on our behalf because I feel a peace that surpasses all understanding. A peace that only comes from God the Father.

The next few weeks will test me, Tom & Emmie. We will be tested spiritually, emotionally and physically. The task at hand is no small task, but it is what God is asking us to do. Difficult decisions have already been made for Emmie, and I'm sure there are more to come. I just pray we are doing what is right for Emmie. So please continue to pray for us. Pray on Monday every chance you get, pray every time we pop into your head over the next few weeks and months.

Surgery is Monday. 6:30am check in time, 7:30am start time, which probably means they'll take her from us around 7:00am, which will be the hardest part for me. Then 6 to 10 hours of surgery. We will get hourly updates, and I'll update on facebook and text message. I'll blog at the end of the day, hopefully, as long as I have time and Emmie is sleeping peacefully.

Thank you just doesn't seem like enough. Thank you for reading, praying and supporting us!!

Psalms 28:7 The Lord is my strength and my shield; my heart trusts in him, and he helps me. My heart leaps for joy, and with my song I praise him.