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.

Thursday, October 27, 2016

Surgery is set!!!

Emmie's surgery is set for Monday, November 28th. 

  We talked to the surgeon, Dr. Coleman, this week. The test results are in, and they were able to get all the information they needed from those tests. Here's what they found: both kidneys are working evenly and the rennin is coming from both kidneys. However, they do believe that most of the rennin on the left side is coming from the upper pole, which is the deformed portion that is being fed by the tiny string-like artery.

Dr. Coleman and her surgical partner, Dr. Eliason, set down with a pediatric urologist, Dr. Park, to discuss the findings of the tests. Dr. Park is recommending that we remove the upper pole of her left kidney. It is functioning, just not very well, it's deformed, they are not sure it's all there, it's getting very little blood flow and it's secreting lots of rennin. They also feel like the lower left is functioning very well and getting great blood flow, so they do not think anything else needs to be done to her left side. 

So her surgery will take 6 to 10 hours. They will do the aortic patch and the reconstruction of the renal arteries on the right side, then remove the upper pole of the left kidney. If you need a refresher on what they are doing see my previous blog post where I explained in detail with pictures what was happening. 

We now have a 3rd surgeon involved in Emmie's case, Dr Park, who will remove the portion of kidney that needs to be taken out, and Dr. Coleman & Dr. Eliason will do the rest of the surgery. While the doctors are quite confident in the prognosis for Emmie, they do not believe she will come off of all her meds. They do think they can get her down to 2 meds though, and we would be very happy with that! She now takes 6 meds, and at one point in her life she was on 9. So 2 sounds great. However, we also know the Great Physician can completely heal her body, and how awesome would it be to see her medication free!

We ask that you continue to pray for us and Emmie as surgery approaches. It's nice to have a date and be able to plan, but it's also stressful and the anxiety tends to build as we get closer. We ask that you pray for these 3 surgeons. That God will be their guide for steady hands and minds during this long surgery. Please continue to pray for our other children, especially Elise. She's too young to really understand. I am hopeful that she will "get it" when she gets to visit her sister in the hospital. There are lots of details to work out for kids, pets, jobs, finances. Just pray for all those things to work out smoothly.

Lots of people have asked how they can help, or if they can get Emmie something. As far as help, we are working on things that we will need. God has already been so good to us in providing just what we need when we need it, but I know things will come up. For Emmie, if you are interested in getting her a gift, let me know. I can give you ideas. We have also put together an amazon wish list of things she likes, and can do while she isn't allowed to move around much! She will be in the hospital for 2 weeks and out of school for 6 weeks. Once back at school, she will not be allowed to go to gym class or recess for several months. So, lots of down time for her! I can email the wish list to anyone interested, but please do not feel obligated in any way. 

Thank you for reading, and thank you for praying us through this difficult journey!!!

I've been co-leading a GodFit group at our church since August. A wonderful group of ladies, working through a study on getting our bodies ready for service. It's all about being spiritually fit, mentally fit and physically fit to serve. When I agreed to help lead this study, I had no idea any of this with Emmie was going to happen. But the week we were at MOTT for testing, I was reading week 4 of the devotion series, and it was titled "Simplicity: faith without worry or distraction". My first thought, was ya right! I'm totally distracted and worried! This isn't good timing! But God knew what was ahead for me when I started reading this book. His timing is always perfect and he knew I'd be setting in a hospital room with my daughter when I was reading it. So, rather than skip it, which I almost did, I read it. Two of the verses in that weeks study really spoke to me.....

"Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own." Matthew 6:34

"Cast all your anxiety on him because he cares for you." 1 Peter 5:7

Here's a little blast from the past for you. Emmie the morning of her very first surgery. February 4, 2010. 12.5 months old. Also, the day Elise was born! That's another "God's timing is always perfect" story I'll have to blog about later!

And here she is almost 3 weeks later. The first time she got to leave her hospital room. The first time I got to do something somewhat normal with her in 3 weeks, which was simply a ride around the halls of the hospital in that little red car she loved so much! With cords and monitors in the engine compartment, we strolled the halls, and she was so happy!!

Wednesday, October 19, 2016

C.S. MOTT Children's Hospital Part 1 Update

So we survived our first trip to C.S. MOTT Children's Hospital in Ann Arbor Michigan. It was actually a really nice hospital, not that I was expecting less, I just didn't know what to expect. The staff was very nice, the nurses were great, they really exceeded my expectations. Every doctor that came in to discuss Emmie was kind, respectful and very knowledgeable.

Emmie had 2 procedures while we were there. The first was the more serious of the two. She had to be put under, they had to go in with a catheter in both legs and go up into her aorta, then into renal arteries, inject dye and take lots of images to get a clear picture of what was going on. They also took rennin samples from all arteries leaving her kidneys to see which one is secreting this hormone that sends signals to the brain to up the blood flow. If you've ever had one of these cath/angio type of procedures, or know someone who has, the insertion sight for the cath isn't stitched up, they use compression to close the sight, then you have to lay flat for several hours with as little movement as possible to keep the sight closed. When Emmie was waking up from the anesthesia , she started coughing, and reopened on of her cath wounds. They had to reapply pressure to close it again. I wasn't there for this, thank goodness, I might have lost it. Emmie is bruised on one hip from the pressure they had to use. She made it back to the room around noon, and had to lay flat til 5:00pm. Despite them telling me they gave her an extra sedative to help her sleep off the day and stay still, by 3pm she was asking "how much longer?" She also had her finger on the button to move her bed to the seated position every time she asked, and would smile at me when I said "Don't you do it". Then she would touch it just for a split second, just enough to make the motor click on. She definitely still had her spunky attitude, even drugged up! (I really don't know where she gets it!) On day two, she had a nuclear scan to check kidney function, this was a walk in the park compared to day one. She watched cartoons for 30 minutes and it was over.

The surgeon, Dr Coleman, came and talked to us around noon on Tuesday. Let me just say, that she is fabulous! She is so kind & so knowledgeable. She handed us a packet of information on Emmie, all the images they had collected, all the tests they ran, a CD copy of everything, her business card, her cell phone number. (Really, what doctor hands you their personal cell number?!?!?) She went through step by step what they want to do with Emmie while looking at the printed copies of her imaging.

Step one: Reconstruct the mid aorta.
     There is a significant segment of her mid aorta that is narrowed, they measured a 20mm pressure gradient across the narrowing, which is fairly significant. They want to do an aortic patch to correct this. Basically they will cut open her aorta and patch it to make it wider, essentially making it the same width as the rest of her aorta.

Step Two: Kidneys and Renal Arteries
    Emmie's right kidney is larger than her left. It also sits up higher than where a normal kidney placement would be. Her left kidney is smaller, the top is somewhat deformed, and it sits lower than where a normal kidney would be.

On the right side, Emmie has two arteries coming off of her aorta to feed the kidney. Typically you have one artery, that branches into two, one feeds top pole, one feeds lower pole. Both of these arteries are narrowed where they attach to the aorta. The surgeons will create a bypass that attaches to the aorta and connects to both arteries and passes over the narrowing.

The left side presents more of a problem. The left kidney has always been in question, since the very first MRI she had after her first heart surgery when it became clear there was something else wrong. They questioned that left kidney. It just didn't look right, but on a one year old its hard to tell what's going on because the kidney is so small. Now that she's 7, they can see it more clearly. There are 3 arteries branching off of her aorta feeding this very small kidney. The top pole isn't all there, it isn't formed correctly, and is functioning very poorly. It is being fed by a very tiny artery, almost string like. They were able to get a catheter in it and inject dye and see it flowing into the kidney, so they know there is something going on there. The middle is fed by an artery that looks to be fairly normal in size with little to no narrowing. The bottom is also being fed by an artery that looks fairly normal, with little to no narrowing.

The surgeons want to wait for the results of the kidney function test and the rennin samplings to come back before determining what to do with the left side. If the upper pole, which is badly deformed, is making a lot of the rennin, then they are proposing we take out the upper pole, and leave the lower half in tack, and do nothing with those arteries. So, she would have a partial nephrectomy on the left side. That thought is very scary to me, but if it will help get her down to 1 or 2 meds, and help her live a normal life, then I'm on board.

Psalm 139:14 I will give thanks unto the Lord, for I am fearfully and wonderfully made:wonderful are they works and my soul knoweth well.

We will hear from the surgeon next week as to what the results of the tests were, and what they decided to do with the left side. We will also get a definite surgery date. They are struggling to find an open OR that is available the entire day (6 to 10 hour surgery) and that both surgeons are available on that day as well. It could happen anywhere from the Tues before Thanksgiving til the first week of December. We have a tentative date of Nov 29th, but at this point, there is no open OR that day, however both surgeons are available.

Thank you for all your prayers. We can definitely feel them. We feel comforted knowing so many people are praying for our daughter and us as we walk through this next step on her journey. I felt at peace with the hospital, the surgeons and the nurses. I know God led us here, and I know its the right time. It doesn't make it any easier on my mommy heart. I still struggle with everything she goes through. I want to take it all away, I want to take it on myself. I want to go through this for her. If there was any way to trade places with her, I'd do it in a heart beat.

It makes me realize though, how much God loves us, to sacrifice his only son for our eternal lives. He traded places with us. Unconditional love. John 3:16 For God so loved the world, that who soever believeth in him, shall not perish, but have ever lasting life.

Continued specific prayer requests.....
1. That we get a surgery date soon!!!!
2. That the results of the tests are exactly what they are hoping for.
3. Emmie, that she will do well, and her surgery and recovery will be smooth.
4. For me as I still struggle emotionally with all of this.
5. Elise, she's struggling with Emmie's special treatment, at least that's the way she sees it, and its so hard to explain to a 6 year old.
6. Insurance will work out, vacation time for Tom will work out, and that my gym will stay steady even when I'm not there.

Friday, October 14, 2016

Back to Reality.... and surgery date

We had a great little get-a-way this week. Me, the girls and my mom headed to Fort Walton Beach to my aunts house. I can't thank my mom enough for making the trip with me and I can't thank my aunt enough for hosting us. We got to play with our cousins and some friends, enjoy the pools and a lazy river, look for sea shells and build sand castles. Some much needed stress relief for me and Emmie. Unfortunately, we headed back to reality on Thursday. I guess I can't whisk her off to a Caribbean island and pretend she's not sick, because that's what I really want to do. Instead, I was greeted with a large packet of information on MOTT Children's Hospital. It is really happening, ugh! To be honest, my gut reaction was to vomit, and burn it :(

Emmie will be admitted to MOTT Children's Hospital Sunday. She will undergo a few tests on Sunday & Monday, and should be released on Tuesday. She will have a nuclear test of her kidneys, which shouldn't be a big deal. She doesn't have to go under anesthesia for this. Should take an hour or so. The second test is an angiogram of her renal arteries. This is a little more difficult for her. She will be under anesthesia. It's done in the cath lab. They go in through her leg with a catheter and inject dye into her renal arteries. They want a very clear picture of what they are dealing with in order to decide on the best course of action. She will need to be monitored after this test, so she will stay the night, and we will come home sometime on Tuesday. 

Right now her surgery is scheduled for November 29th. (It could possibly change after they see the images of the angiogram) It will be a 6 to 10 hour surgery. The first few days after surgery will be rough for her, and for me. She will be in a lot of pain, and I won't be able to take it away. The recovery should get a little easier as each day passes, but it will be long and hard.

Specific prayer requests we have right now.....

1. That the testing this Monday will go well, no complications, and Emmie will not be too anxious.
2. That we will be able to work things out with our insurance. Right now they are telling us the hospital is out of network, which means that 30% of the bill will fall on us.
3.  That my anxiety level will come down a little. I've not been this emotional about surgeries and procedures with her for a very long time. I know it's due to the difficulty of the surgery and the recovery, plus its a new hospital, new team of doctors, new everything. We've never done a surgery like this, I have no idea what to expect from Emmie afterwards. I had grown "comfortable" so to speak with Riley, our team of doctors and what to expect out of Emmie, this feels so foreign to me and I'm really struggling with it. As I struggled this evening even writing this post. I began searching for verses of comfort. 1 Peter 5: 6-8 says "Humble yourselves, therefore, under the mighty hand of God so that at the proper time he may exalt you, casting all your anxieties on him, because he cares for you. Be sober-minded; be watchful. Your adversary the devil prowls around like a roaring lion, seeking someone to devour. Satan is preying on my weakness right now. 

4. Pray for the surgeons. We are handing our daughter over to them and we are trusting them. I pray for a clear decision on what is the correct procedure, steady hands and focused minds during surgery.

I know whose daughter she is. She is a Princess. She is the daughter to a Heavenly King. He goes before her, he will be with her, and he will never leave her.  

Friday, October 7, 2016

Who knew you could be so emotionally connected to a doctor??????

Well, I wish I had more to report, and better things to report.....

The latest on surgery and testing....... Emmie will have a nuclear scan of her kidneys and an angiogram of her renal arteries the week of Oct 17th. We do not have the exact date yet, however we do know that we will need to be in Michigan 2 to 3 days for testing that week. Surgery should still be on track for the middle of November. I am hoping to confirm all dates early next week.

Today, Emmie had a routine check up with her nephrologist, Dr. Leiser (kidney doctor, but also her hypertension specialist). When we arrived, I was told he was on a leave of absence, and we would be seeing someone else. I know due to privacy laws and such, they are not allowed to give me any more info than that. All they could say was that he was on a leave of absence and they were not sure he was returning. I'm sure most of you reading this have not had a child with on going medical needs, but those of you who have will get where I'm coming from, and hopefully those of you who haven't had to deal with this, will understand too.

The first time Dr. Leiser saw Emmie, she was 2 days post heart surgery. She was 1 year old. She was still on a vent. We didn't know if she was going to live or die. At the time, I had no idea the level of bond we would make with this man. He became her hypertension specialist. He controlled and adjusted meds until we found what would work. At times in Emmie's life, we've had to see him weekly, biweekly, monthly. During that time, Emmie was having blood work done 3 times a week. We were marking her body with a sharpie to keep track of where the last draw was so we weren't using the same arm or leg too many times. I've made lots of late night calls to him over high blood pressure, and kidney function. He's reassured me, he's comforted me, and he's cared for my daughter like she was his own. I believe he loves her as much as I do. I believe he has stressed out over her blood pressure like I have. I know he has looked through her medical records, studied over them, and put in countless hours of work to make sure she was receiving top notch care. I've said for years that he is by far our favorite doctor! (Not that there aren't others we love as well!) But we have developed a bond with him that I can't explain. He's been through EVERYTHING with us. He takes his time to explain things to me. He would even let me ask my list of questions that I had researched on WebMD. I joked with him, that I do in fact have a WebMD degree! HA!!! He would let me try to take her off of meds, knowing full well it wouldn't work. He'd tell me "You can take her off hydrolazine, and call me in a few days to let me know her BP numbers." And of course, I would have to call him and say "You were right, I had to put her back on it." I love that he gave me a say in her care. I love that he treated me with respect, he talked to me like a human, and he cared. We have taken him gifts, food, and had tons of conversations about all kinds of things other than Emmie and medicine. I know about his kids, his mom, I know he's Jewish.

I did not realize how much I care for him as a person until today. I just started crying when I thought we might not see him again. I needed to talk to him today. I needed his reassurance that going to Michigan is the right choice. I needed his smiling face, and I needed the one doctor who knows my child inside and out to tell me its going to be ok.

I have no idea what's going on with him. They did tell me "He's ok." So, I guess that means he's not sick, but I'm not sure. I'm asking for my prayer warrior friends and family to pray for Dr. Leiser. Whatever is going on in his life that would cause him to take a leave of absence, means he needs our prayers.

While we are connected to and trust these doctors, I also know that The Great Physician know's my child inside and out even better than Dr. Leiser. He knitted her together in just the way he wanted her. While I do not understand why, I know it is a part of his plan for her life, and mine too. I pray daily for wisdom as we make difficult decisions. I pray for the doctors that God puts in our paths, and I'm asking you to do the same!

Thanks for hanging in there with us! We can not do this alone!! Here are just a few of the many pics we have of our favorite doctor. Most of our pics are of him checking her blood pressure, because for the longest time, she wouldn't let anyone else do it! Just him! I personally think he looks like a skinny Albert Einstein. :)

Thursday, September 29, 2016

Emmie Surgery Details

Finally, we got the call we've been on pins and needles waiting for. Dr. Coleman, a pediatric vascular surgeon from the University of Michigan Children's Hospital called us today. Even through we waited a few extra days for the call, the timing was perfect. I was pulling in the driveway when the phone rang, and Tom was working from home, so he was able to be a part of the call as well.

Here is some background info that she was able to give us......

Emmie's mid aortic syndrome is what she would call moderate, not severe! YAY! She said she has seen some cases where the aorta looked like a tiny thread it was so narrow, and Emmie's is not that bad! Thank the Lord for that. She said that all of Emmie's arteries in this area are funny in nature and there are multiple arteries in areas where there should only be one. She specifically mentioned renal arteries, which we already knew were not normal, but also arteries around her intestines. She also said they believe these sort of birth defects take place during or around the 4th week of gestation. During this time the aorta is formed by several arteries fusing together, and sometimes the aorta is under fused or over fused. 

Dr. Coleman and the team of vascular surgeons feel that now is the time to fix these issues for multiple reasons. Number one, the fact that Emmie is on 6 different medications, some of which she has to take twice a day in order to keep her BP normal. Number 2, there are some long term side effects to being on so many meds at such a young age and potentially for life if we do nothing to fix the problems. Number 3, she can not have the tether cord release surgery until her BP can be more accurately regulated between the upper and lower portions of her body. 

Some of the options for surgery was mentioned to us when Emmie was 3 years old, this was when we first found out about the mid aortic syndrome. However the consensus among the doctors then was that she was too young. They thought it would be something to address when she was closer to her adult height. However, today Dr. Coleman assured us, that it is completely safe and she is well within the appropriate age for this surgery. She said they do not like to do this on kids under the age of 5, and since Emmie is now 7, she is big enough.

They will address the mid aortic syndrome with an aortic patch, which is similar to what was originally done with her coarc in the arch of her aorta. They will open up the aorta to make the narrowed area wider and patch it.

At this point the plan of action for the renal arteries isn't clear. Dr. Coleman would like to do 2 more image studies on Emmie's renal arteries before making a final decision on the approach.

We will be making a trip to Michigan in the next few weeks for an overnight stay in the hospital with Emmie. They will do an angiogram and a nuclear study on her kidneys. We will get to meet her surgery team, discuss everything, and make the final plans.

Surgery will probably be in November. It will not be an easy surgery, in fact I'd say it's more serious than her original heart surgery. It will last 6-10 hours. Afterwards, Em will go to the PICU, she will be on a vent for about 12 hours. She will have an epidural for 1-2 days to control the pain. After that, they will assess the need to keep the epidural in or take it out. She will stay in the PICU for a week. During this time they will be working to get her sitting up, out of bed, walking the halls. But all meds will have to be given intraveniously, which is why they stay in PICU for so long. Also, blood pressure is an issue after a surgery like this, so another reason to be more closely monitored in the PICU. The biggest side effect of the surgery is the pancreas gets"disturbed" and doesn't like it! So, it starts secreting a hormone that shuts down the intestines. It takes several days to get the pancreas to settle down and the intestines to work again.

Once BP is controlled again, intestines are working again, she will move to the heart floor, where she will spend another week. Then, if everything is going according to plan, we will bring her home. She will have check ups with them at 1 month out, 6 months out, and one year. She will not be allowed to go to school for 6 weeks. She will not be allowed to do anything physical, sports, recess or PE for 9 months. She can't even carry her own backpack for several months. This will in no way shape or form be easy for her. I'm pretty sure it's going to be tough on me to watch her endure this as well.

The positives.......
Dr. Coleman says if you surveyed 100 kids (and she sent me the studies) that they have performed similar operations on, 97% have seen an improvement in their lifestyle and medication doses. 27% of them have reduced their meds to 1 or 2, and 70% of them have been able to come off all meds! Now, she did say that Em is a complicated case and she doesn't think she will come off of all, but does think they can get her down to 2 meds, improve her long term quality of life, even giving her the possibility of having children in her adult years should she so choose.

Dr. Coleman actually gave us more hope and positive things than we've gotten in a long time. She said she believes that Em's team of doctors at Riley have done an excellent job taking care of her up to this point. Another praise to our Lord for leading us to the right doctors! Riley is a wonderful place, full of caring nurses and doctors who are saving lives on a daily basis. 

We will get definite dates for testing and surgery on Monday. 

While I am by no means ready for this, nor do I want any of this. It's here. I choose to face it head on knowing my God is in control. He will carry Emmie, her doctors, and our family through this. I appreciate your prayers and kind words. They have helped me through this week. When we learned of this last Friday, I had a rough few days. I sort of became a recluse, didn't want to go anywhere or talk to anyone. Avoided church because I knew I'd cry talking about it, and I knew people would have questions. 

Please, don't hesitate to talk to me, ask me questions, I really feel at peace with what's happening, and that's a credit to all the prayers that have been going up for us.

"I can do all things through Christ who strengthens me" Philippians 4:13

Friday, September 23, 2016

More Surgery in Emmie's future.....

I last gave an update on Emmie in April of this year, so about 5 months ago. It's time to update again and ask that again you would pray for Emmie, her doctors and us as parents as we make some difficult decisions. If you need a recap of where we were last spring, please see the post from April.

The question since last spring has been "Is it safe to do a tether cord release surgery on Emmie's spine given her vascular issues and blood pressure fluctuations between her upper body and lower body?" After the "meeting of the minds" took place in April, they decided they would like a more in depth look at Emmie's vascular system. So, in June she had an MRA of her head, chest and abdomen, specifically looking at her vascular system. Since that study was done, it's been relatively quiet. I've been around this block enough to know that no news is good news! So, I wasn't concerned, and didn't try to find out anything. I think I was living in denial a little bit, just enjoying our summer of playing in the pool and basking in the sunshine!

Two weeks ago, Emmie had a check up with her orthopedic doctor, the one who monitors her scoliosis. Dr. Back (as we'll call her) asked about the tether cord surgery, she wanted to know where we were with that, was it scheduled yet, etc. Well, nothing is scheduled, and no one has reached out to me. So, Dr. Back reminded me that Emmie really does need the tether cord release surgery and it will help with some of her spinal issues. Her scoliosis is getting a little worse, so the sooner we can release the tether the better.

Unfortunately, this means the "living in denial' is over for me. Time to make some calls and see where we are with all of that. I put in a call to Emmie's cardiologist and I found out that that they have sent all of Emmie's records to the University of Michigan Children's Hospital (MOTT) for a second opinion. Dr Heart (cardiologist) tells me that MOTT's has the most robust pediatric vascular dept in the country, and she feels that their opinion would be highly valuable in assessing Emmie's needs. She said that they have had Emmie's information for a few weeks now, and that she would make a call to see where they were with everything.

Today I got the call from Dr. Heart to fill me in on everything MOTT's pediatric vascular surgeons think.....

The vascular surgeons at MOTT's think that Emmie is a prime candidate for vascular surgery. They believe that now is the time to act and try to fix some of her vascular abnormalities, since they are now presenting problems that interfere with other procedures she needs (such as tether cord release). The potential outcome of vascular surgery is great, she could be able to come off of most or all medication! However, the 2 options for surgery are very difficult, hard on her body, and present long recovery.

One option is a bypass of the mid-aortic syndrome. This would however require a quadruple bypass because they'd have to create a by pass to each renal artery, one to the large intestine, and one to the bowl. All 4 of those arteries connect to the aorta in the area where her aorta narrows, which decreases the blood flow to those organs.

The second option is to take her renal arteries out, and replant them in a different area of her body so they can connect to the aorta in an area where they will get better blood flow. There is also the possibility of using another artery in her body in place of her renal arteries, if the renal arteries are also narrowed.

Any of the options above will require her to have surgery at the University of Michigan Children's Hospital, which is 4.5 hours away. It will require a 2 week hospital stay and a not so fun recovery for Emmie.

Obviously my first concern is for Emmie. What is best for her, her body, the risks, the outcome, what do we gain from this, is it worth it........ the list of questions running through my mind is overwhelming.

But the mom/wife in me also questions EVERYTHING else. Who will take care of my other kids? How will we afford to stay in Michigan for 2 weeks? I can't stop working for 2 weeks? Tom can't stay there for 2 weeks? How will we pay for the medical bills that will fall in our laps after surgery? How can I not see my other kids for 2 weeks? ..........Another list of questions that are just overwhelming.

I simply can not wrap my mind around all of this yet. The surgeon is supposed to call me on Monday. We will set up an initial appointment with them, then set up a surgery date. It could all happen in as little as 6-8 weeks.

I've spent the majority of the evening just crying about it. I know God has a plan for that girl. His plans are bigger than mine. His plans are better than mine. And I know he works all things together for my good (and hers). Even though these verses run through my head, I struggle with the reality of the situation. She deals with more than most of us have ever had to do. She teaches me everyday what the meaning of strength is. I want to take the burdens from her so badly. My mommy heart just aches for her.

So I ask that you all just pray for us as we make these decisions. Pray for her doctors. Pray that Emmie will be ok with all that is about to happen.

I'll update again when we get more info!

Tuesday, April 12, 2016

Emmie Update

Emmie Update.....
I've not posted an update on Emmie in awhile, and thought I'd fill you all in and ask for your prayers!

For the most part Emmie is doing well. She is a happy, energetic 7 yr old. She's doing all the things every other girl her age does. You'd never know by looking at her how many health concerns she has.
Emmie's heart looks great! Exactly how it should be. Her kidney function is good, and we've been able to keep her blood pressure normal (with 6 medications) for several years now. 

Her original diagnosis of aortic coarctation is still monitored every 6 months to a year, and her stent is adjusted as needed (which is basically as she grows taller). She has also been diagnosed with mid aortic syndrome, which is another narrowing in her aorta, but lower in her abdomen, around the belly button. This area is monitored as well, however until she is fully grown, there's not much they can do to treat this.
Her kidney function has not gotten worse, and in fact stayed pretty much the same since about the age of one. She's got 2 partially functioning kidneys: her left kidney was never formed correctly in the womb, so it has always only had the bottom half functioning and her right kidney is receiving very little blood flow due to the narrowing in her renal arteries, so it also doesn't function at full capacity. However, her nephrologist tells me that you have a lot of extra kidney!! So she's ok!

The latest in Emmie's world of doctor visits and hospitals has been the scoliosis diagnosis. She now wears a brace to help slow the progression of her scoliosis. She also has something called a tether cord, which is present at birth but should disintegrate on its own, well hers didn't! It needs to be surgically snipped in order to help slow the scoliosis. This surgery is pretty serious, requires a neurosurgeon, 3 days in the hospital and several weeks of down time.  This surgery was supposed to happen in January, but due to complications with blood pressure, it was stopped before they did any cutting but after she was already under anesthesia. 

Since then, there have been lots of opinions on what's causing the blood pressure issues. Emmie's BP above her coarch runs high, and below the coarch runs low. The low BP is also affecting the area of the spine that needs to be operated on. The spine doesn't like low BP, therefore the surgeons were concerned about damaging her spine during surgery due to lack of blood flow, which is why the surgery was stopped.

There is also this lingering question that has been brought up more than once, does Emmie have something called "neurofibromatosis". It could answer some questions if we got that diagnosis, but ultimately doesn't change the course of treatment for her. That is something we are hoping to get answered once and for all very soon, but requires genetic testing, since she doesn't have all the clear signs that lead to it, and genetic testing is expensive, insurance companies don't like to pay for it, so another battle we have to fight. 

All of these doctors are coming together Wednesday afternoon (April 13th) to discuss Emmie. They will make a decision on how to proceed. How do they safely operate on her? This isn't the first time she's been the topic of a "meeting of the minds" so to speak, in fact I'd say she has quite often been the topic of discussion amongst these doctors. They tell me she's an anomaly, they've never dealt with a case quite like hers and she doesn't make things easy on them!

I ask that  you please pray for Emmie. Pray for her team of doctors. Pray for the decisions that need to be made. I trust these doctors with my daughter, but I trust in God the Father even more. I pray for his healing hand on her body daily. I wish she didn't have to go though any of these things. I wish she didn't take 6 medications daily, I wish she wasn't a Riley Child, I wish I could take all of her pain, but the fact of the matter is, I can't. I can however pray for my daughter and her team of doctors, and I ask that you do the same!

Palms 139:14 I will give thanks to You, For I am fearfully and wonderfully made.