New Heart News

So, Kiley had another cardiology appointment this morning. Jason and I knew she had been getting more and more tired lately, which the echo confirmed. Since her mitral valve is not working properly the blood has been backing up into her Left Atrium. This has caused it to grow over time. 

Each echo the cardiologist has seen it getting slowly bigger and bigger. Thankfully we can wait until after our trip but she is planning on doing a procedure called Cardiac Catheterization. 

She also is bringing Kiley's case to her team of cardiologists to do a team approach and get other expert opinions on how to proceed with her case. It is not a cut and dry situation. Her desire is to wait until Kiley's heart is at adult size to fix her mitral valve, but that is what is causing the pressure change in the atrium. 

Please pray for wisdom as the doctors work together to do the right thing. When they do the procedure above, should her coarctation need to be expanded they can balloon it as they couldn't fix it completely. When they did the surgery before they couldn't fix it 100% because the section was too long. 

If her left atrium gets too big then it will start pushing blood back into the pulmonary veins and arteries and that would lead the blood into the lungs. This would cause her body to think she has pneumonia or asthma. 

Thank you for your prayers of wisdom. Also, pray for her because she didn't like this news. Thankful for God's plans and that He is in control. I love her doctor and appreciate her working to find the best plan for Kiley.

Blessings of the Heart

So each night we bless our children, each one by one.  We have since this summer and being challenged by our devotional at family camp (Camp Grow).  Last week while I was blessing our daughter Kiley, God laid it on my heart to start praying every night for healing of her heart.  Why not, our God is an amazing God and can do ANYTHING!  And when I mean ANYTHING, He could say tomorrow that her heart is healed.  I believe it with everything in me.  I also believe he can say no.  But, He has challenged me to just ask.  I think part of the challenge is from studying Revelation and the magnitude of importance the prayers of the saints are to Him.
So, each night I hold my hand over her heart and pray.  Pray for healing. Pray that every single problem with her heart will go away and that it will be fully healed.

Tonight, as I prayed over her heart, she looked up at me and said, "Mom, could you add in there that He would allow me to have kids.  I really want to have kids."  She knows, that as of now, the next surgery for her will be when she is an adult.  She also has been informed that as of now the medicine she would have to go on will not allow her to have kids.  As of now.  We know that medical advances came happen at anytime, but she knows.  She also knows that we have a God who cares about our wants and wants us to depend on Him to have them.

Felt like sharing this tonight.  May He be your comfort with whatever you are going through today.  Remember that we have a God who is in control of EVERYTHING.  He cares.  He knows. And He wants us to trust and depend on Him.

Repair of the Coarctation of the Aorta

THE DAY OF THE SURGERY

Kiley was packed and ready to go.  She had such a good attitude:

"If I can run again, then they can do whatever they want."

Aunt Kristyn flew into be with her.

Grandma drove to be with her.

                        GG and Papa came up to be with her.

 They gave her an award for BRAVERY!  Because she was definitely brave!

They brought us back into the surgical waiting area and we waited and waited and waited.  They brought books for us to read to her and we played with our camera taking funny pictures.        Then the anesthesiologist came in and explained things to us and the plan for the surgery. Then they took her back.  My mom has this beautiful picture of Kiley and nurse Natalie walking back hand-in-hand to the operating room and her talking the whole way.  We were so proud of her.  We know it was all the prayers of everyone all of the country, ones we didn't even know, that were lifting her up at that moment.  And then we waited in a family waiting area. It was set up just for us.  It was nice not having to wait with everyone else. We played Speed Scrabble to pass the time.  Then Nurse Natalie came and gave us an update halfway through the surgery that everything was ok.  Within two hours all was done and she was headed to post op.  We went up and were waiting and waiting to see her.  The hard part was they called my husband and I back and then a doctor came out and told us that coarctation was more closed that they had anticipated, but that they were able to do a good repair and she was doing good.  The hard thing was that the epidurial cracked during surgery and they had to take it out, but we didn't know that at first and it took them FOREVER to come back and get us and we could see all the nurses coming and going from  her room and so we thought something bad was happening, but they were just trying to get the tube out of her back.  This is our dear daughter after her surgery.  She did such a good job and we thank God abundantly for the sucess of it.  I will have to post later about her recovery, which was amazing in itself.  Praise God!

Shone's Complex

Our daughter went in for her 8th annual checkup,in April, and as with the previous year had some high blood pressure. The doctor the year before did not think much of it because there was a TON of different situations our family was going through at the time.

So, they checked the pulse in her femurs and could barely feel one. Therefore he sent us to a pediatric cardiologist. At that appointment they could not find a pulse in her legs and decided to do an echocardiogram. This revealed multiple problems with her heart:
Shone's Complex:
1) Parachute mitral valve (mitral valve stenosis)
2) Ventricular septal defect (hole in heart)
3) Bicuspid aortic valve/aortic insufficiency aortic valve
4) coarctation of Aorta
5) small left ventrical

Shone's Complex:

1) Parachute mitral valve (mitral valve stenosis)

2) Ventricular septal defect (hole in heart)

3) Bicuspid aortic valve/aortic insufficiency aortic valve

4) coarctation of Aorta

5) small left ventrical

From there we had to have MRI/MRA of heart and brain to make sure the details of what was going on.  At first they had told us that she needed Open Heart Surgery (OHS) and then after the MRI they decided to go a different route.  They decided to fix her Coarctation of the Aorta because it was almost completely closed, getting no blood to her legs and then see if the pressure change fixed the other problems. 

We decided to go with that.  The month of June was difficult considering if she got her heart rate up too much she could just drop dead (trying not to be too graphic, but honest).  We relied on the fact that our God had kept her safe these eight years without us even knowing she had the problem, He could keep her safe this rest of the way.

On July 6th, after gentic testing which ruled out Turner's Syndrome and Noonan's Syndrome, she went in to have her surgery.  She was such a trooper.  We went to two different doctors one at Lutheran General, Dr. Ilbawi and met with a team at Children's Memorial, Dr. Backer.  After lots and lots of prayer (by many people) we decided to go with Dr. Ilbawi, and could never be happier. 

Side note: Dr. Ilbawi is one of the most focused and humble doctors I have met.  He did not seek to platform himself, even we my husband and I asked him to compare himself with the other doctors.  He was gentle, but honest, as well informative.  He was patient with all of our questions and concerns and did not make us feel like we were dumb either.  His Cardiac Nurse Natalie Rudolph is amazing and a great support who will answer all the questions you need and, like Dr. Ilbawi, make you feel comfortable the whole way.  My daughter felt so comfortable with her that she walked to the operating room holding Natalie's hand.

Here is a picture of my daughter with Dr. Ilbawi, she never met him and to this day has not as he likes to focus on the procedure at hand.  Then once a year he has all the kids that he has performed surgery on for a family gathering with him. 

The next post I will post the day of her surgery for the repair of the coarctation.  This will not be her only surgery, but God knows all and knew this is all I could handle at this time.  It was enough.