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

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!

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.

Friday Fun March 16th!

Hard to believe it's already March!! Last year at this time I was in the final stages of paperwork prep for my trip to China! As we approach the one year anniversary of being united with Elise, it's amazing to think about how far we've come! Not only with Elise, but everything that happened to our family as a whole. I'm happy to report things have calmed down quit a bit! 

A recap: In March of 2011 our house sold (which we had been trying to sell for a year!) We moved into a rental house in April. Tom accepted a new job in May. I went to
China in May. We bought a new house in June. We moved AGAIN in July!! All of that while adjusting to a 4th child, and helping her adjust to life with a family.... life was a little CRAZY!!

Things are much calmer, except for the 2 yr old and 3 yr old running wild around the house, making messes with whatever they can get their hands on!! 

Here's a few pics to show you how the girls and I spend our days while Tom's at work and the boys are at school!

The girls LOVE to make me laugh!!

We pretend to be camping.... only indoors, because that's more fun!

 I work as a personal Trainer, the girls like to help train people too! They are great weights to make training harder!

The girls go to school one day a week! They LOVE CMO.... and so does mommy!! The girls are ready to go with their lunch boxes!

We spend a lot of time in the car! So, this is how we roll....... headphones on (watching Mickey Mouse) sippy cup, snack & blankie!

Friday Fun!!!

Today we spent the morning at Chuckee Cheese to help my niece, Lindsey, celebrate her 4th birthday! It was fun to celebrate with her! She's a little miracle baby, who's not so little any more! Born 8 weeks early and weighing in under 5 lbs.... you'd never know it now!! Thanks Lindsey for asking us to come help you celebrate! The girls are so blessed to have a cousin their age!! We thank God for your miracle arrival and how you've grown and blossomed in the last 4 years!!  Now, watch out world, these three girls will keep all of us hopping as they grow up together!!! Ages 4, 3, and 2!! Little stair steps! With a whole lot of energy!

Wordless FRIDAY! February 17th 2012

 Play date at the Commons indoor Playground

So, the following pic deserves some explanation. Emmie has been waking up in the middle of the night and NOT wanting to go back to sleep. I told her she had to stay in bed, look at books and she was NOT allowed to come wake me up!...... Well, she did not wake me up, but she did NOT stay in bed either! She found sharpies, a black one and a red one, she let the dogs out of their kennels, she colored on herself (after stripping down to her birthday suit), she colored on the dogs and she colored on a chair. This is what I found when I went to wake her up the following morning .........

A pleasantly warm winter day!! Which hardly ever happens around here!!

 

Birthday letter to a Birth Mother I'll Never Meet.....

OK, so I've missed Wordless Wednesday the last 2 weeks :-)  I'll be more proactive this week!!

(typed all of this on Elise's birthday, Saturday February 4th)
So today Elise turns 2!!!!! I can't believe it! We waited for her for so long. At times the wait was painful, frustrating and seemed never ending. And now she's here! She's been here for over 7 months. It seems like yesterday I was opening up the email to see her face for the first time, then hoping on a plane 8 months later to go get her, then holding her for the first time, and bringing her home to her forever family and placing her in the arms of her daddy! Feeling so blessed by this amazing journey, amazing daughter, and an amazing God who orchestrated the whole thing!

There is also a mother out there somewhere who is remembering this day a little different than me. She remembers laboring and delivering a beautiful baby girl that she could not keep. She remembers holding her crying newborn baby and soothing her. She remembers staring at every inch of this baby girl and trying to memorize it. She needed to burn the image of her baby in her mind, because tomorrow she would not see this baby anymore. Maybe she begged her husband to let her keep the baby, maybe she named this tiny little girl she held so close, maybe she sang the baby to sleep......

My mind can go on and on imagining the joy she felt holding her baby and the pain she felt knowing what laid ahead. Sometime in the night of February 4th, she wrapped her baby in a blanket, she said goodbye to her precious baby and she, or someone she knew placed the baby at the gates of the Poyang SWI.

I wish I could tell her all about the baby girl she gave up. If I could, this is what I'd say......

Dear Birth Mother,

I wish I could tell you that she is doing great. That she is in the US, in a small town in the state of Indiana. She has a family with 2 brothers and 1 sister. She has a mom and a dad, and a huge extended family, and all of them love her very much!

I would tell you that Elise is happy, playful and full of energy! She smiles all the time! She smiles so big her eyes disappear! Her laugh is contagious. She walks, runs, and even skips! She talks nonstop :-) She LOVES food! She loves to play with her brothers and sister. She loves playing with sidewalk chalk, her power wheels jeep and baby dolls. She is very attached to her bear blankey. She is terrified of animals. She weighs 28 lbs now! She is growing like a weed! She has a great life full of everything she needs, and most of what she wants.

She was the missing piece to our family. We love her so much and can't imagine our lives without her! We are forever grateful for your sacrifice. You gave up something so dear and precious to you, in hopes that she would have a better life. Because of your sacrifice, we have been forever blessed with a daughter!

Thank you,
Tracy/adoptive mother