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

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.

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!!

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.

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, 7 casting all your anxieties on him, because he cares for you. 8 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.  

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. :)

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