Decision Made Part 2 (In Jer's Words)

Jeremy here. I wanted to put down my perspective as well, on our decision to move forward with getting Veiyah on the transplant list.

When we met with the doctor a week and half ago to discuss the transplant process, in my mind the decision had already been made that she would be placed on the list. We were told a transplant was the only option left, so that left no room for decisions to be made, right? Wrong. We were told at the meeting that we had to make the decision and give consent for the transplant process. For a few days after that I tried not to think about it too much and just let it sink in.

Those few days I found myself slipping down into a depression. Then one day I was talking to Ani about everything and I said something that we both had not really given any thought to before.

Right now Veiyah is doing great.

She is growing physically and her personality is really starting to shine. She laughs so much and smiles at everyone when they walk by. She is in physical therapy and so is starting to move around a lot when laid on the floor and is even doing very well sitting up on her own.

So in discussing the transplant option with Ani, I made the comment that if she is on the list we could get a call at any time letting us know that a heart is available. And that during the transplant there was a real risk that Veiyah could not survive. So here we were with a decision, do we continue on as is with Veiyah doing great, knowing she could live many more years with her current situation. Or do we put her on the transplant list and maybe lose her in months or a year whenever a heart becomes available.

Realizing that aspect of the decision we faced hit us hard, and also changed our minds that the transplant option was a given. I struggled for several days trying to come to a logical conclusion on what to do. With either option the outcome could be good.

Or it could not.

I had no idea how each option would play out, and so in my mind there was no logical way to make this decision. I am a very logical person and like to think things through thoroughly before making any decision. So this predicament was killing me.

The gravity of making an incorrect choice was weighing me down, especially considering the stakes. I have been through a lot of difficult trying times with Veiyah. Last week struggling with this decision was one of them.

A week ago today I was again trying to logically work through this decision. I finally broke down and came to a realization. There was no way for me to make this decision. Not knowing the future excludes me from being able to choose the path that is best for Veiyah. So now what? The hospital was waiting for us to tell them what to do.

Ani and I were sitting around the table with kids trying to talk things through. As we were talking and as I was explaining that we could not make this decision, something dawned on me.

We don’t have to make this decision.

We know Someone who knows the future and what is best for Veiyah. So why not let Him make the decision? So that is exactly what we are doing. We are leaving all decisions regarding Veiyah’s life and health in the hands of God. No matter the outcome of Veiyah’s journey here on earth, we will trust that what happens is His will. So how did that realization affect our decision to place Veiyah on the transplant list?

Simple, if we did not place Veiyah on the transplant list for personal selfish reasons, we would in fact be limiting what God was able to do.

By having her on the list it gives God the opportunity to have that happen if that is what is best for her. And if there are different surgical options that become available for Veiyah in the future as she grows, having her on the list will not exclude her from those options. So we made the decision that would leave every possible avenue open to God to work through as He deems fit. I did not want to do anything that would get in God’s way of working out the best through Veiyah.

There was some relief coming to this conclusion as a family. We decided to sleep on it and make sure we still felt the same way the next day. We did, and so I called the hospital and informed them of our decision.

Later that day we sat down as a family and prayed. We laid out before God the reason for our decision, that we wanted Him to dictate how Veiyah’s life would proceed as He created her and saved her. We told Him of our first wish,

that Veiyah would be completely healed.

And that no matter what she has to go through we want her around as long as possible.

We also put our trust in God in the reality of the situation with having Veiyah on the transplant list. Deciding, that if we get a call that a heart is available for her that we will take that as God’s will and will not second guess our decision at that time.

I believe that our family made the right decision for the right reasons. So we take comfort in the fact that the decision making process is complete. We feel peace about the decision itself, but now are still faced with the cold hard reality of the transplant process.

Please continue to pray for Veiyah and our family as we continue on this journey. Thanks for everyone who prayed last week as we battled through this process.

Jer

Fear (Not)

Madi was so excited when I came out of my bedroom. She was all showered and her room was clean, bed made, and she had the best story to tell me. "Mom! There was an earwig in the bathroom, and GUESS WHAT I DID?!"

"Oh my GOSH, did you kill it Madi????" I was so excited that she had gotten so brave!

"NO WAY!" She looked at me like I was crazy. "I grabbed my towel, stepped out of the shower onto the toilet, and climbed up onto the counter and ....MOM! I jumped from the counter all the way out to the hallway!!!"

"Oh. I thought you were going to tell me a success story..."

"That IS a success story, Mom! I got away!!!!"

I stopped right there, as she walked off proudly. Hmm.

To her, that WAS a success!

To me, there was still an earwig on the loose in the bathroom...hopefully in the bathroom by then...

Instantly, I thought of the word FEAR. I used to shake when I saw a bug. Until I became a Mom that is, and I still shake, but you won't see it. Unless you can see through me and see my heart beating over 120 bpm. and my teeth clenched so tight I'm in danger of lock jaw.

Fear is not just a feeling. It is something that you must speak against. Fear is a spirit. It is mean, it is frigid, and it is out to get you till you stay in that bed forever. Till you avoid everything that is natural in life.

...Till you say no to something that can save someone's life. Till you are only thinking of what would be good for you, and not for her...

Madi found a whole obstacle course to get away from this fear of an earwig. I don't blame her! I bet you don't either.

But that fear, if I wouldn't have gone in and found it and smashed it, would follow her in her mind forever. Going to the bathroom wouldn't be such an easy task anymore. Because she left that fear, there.

Jeremy and I have decided to re-visit our fear. Face to Face. Mano-a-mano.

We've gotten a lot of feedback from all of you. We so appreciate all of it, especially the success stories, the "what happened" in your life or someone you know's life, and especially the prayers.

All of that, and of course what happened with Madi, helped us make the hardest decision we've faced yet. One would think it's an easy decision, because it's what sounds best. But we felt like we were placed with a God decision. It's like Veiyah's life was in our hands.

We had to put her life in God's hands. In order to do that, we had to let go of our own feelings and wants. Of having Veiyah with us for however long WE want. ...But how would WE know how long that would be? We have no way of knowing God's timing. A heart transplant is her best chance at life, and that decision is made for Veiyah and from God.

We will be taking V down to the University today, to have all of her lab draws and for us to meet with a social worker. People have to know that we will take care of such a precious gift. Hearts just don't come out of nowhere.

They come out of someone else's Veiyah.

For that, we will already pray for this family who will, in fact, lose their child with an O blood type heart one day, no matter what decision we would make. We pray for their healing and peace, and we pray for their days until then. To embrace life with their little one. To have amazing times. For God's grace and mercy to be upon them.


So, we take a(nother) step of faith. We, like I said in our last post, let the Great Conductor, conduct Veiyah's life. Not us.

Fear, you can't have us.



When you go through deep waters, I will be with you. When you go through rivers of difficulty, you will not drown. When you walk through the fire of oppression, you will not be burned up; the flames will not consume you. For I am the Lord, your God, the Holy One of Israel, your Savior. Isaiah 43:2-3 NLT

God is the Ultimate Composer

So, here we are. It's taken a lot of energy to come to this blog, sign in and post this update that Jeremy so willingly and greatly wrote. It's amazing how much 2 (actually 2.5) meetings can take out of you.





On May 10th we were scheduled for an appointment with Dr. Davis, Veiyah's heart surgeon. May 9th was Mothers Day, and Jeremy and the girls wanted to help me relax before the "big day" as we call them. They ARE big. Meeting with a surgeon about anything to do with your child is big in itself.

So, Jeremy got a hotel room for us to relax in, swim and feel a little special. It had a jacuzzi in the room and it was very much needed. Yes, I know....jacuzzi should just mean Jeremy and I, right? ;) Being that it was heart shaped... hmmmm

...But this also meant that we didn't have to walk the girls down to the pool which was much more relaxing for me, and they got to splash around in a tub shaped like a heart! Pretty cool for 2 princesses. ...They'd kill me if they saw that I called them princesses.

Now, this appointment was scheduled for a long time. We knew it was at 9am so we had no reason to think otherwise. No reason to make sure we answer our phone. No reason to make sure our phone is CHARGED! (Things to do in future) So, we all get up and go, get there on time for once in our last 2 years of University appointments. Jeremy grabbed my hand as usual when he sees me nervous. Then, there she (yes, she..not he) walked slowly down the hallway, with a face of ...regret, empathy, ...bad news.

The Dr was stuck in airports coming from GERMANY! WHAT? Maybe when the appointment was made, it would be a good idea next time to say, here is your appointment time, but please be prepared for anything as the Dr. will be just flying in from GERMANY that weekend. ...Am I right?

So, we were forced to wait another WEEK. Let me tell you, stomachs tend to turn when you are waiting for such things.

And baby girls get pretty sleepy...





We finally got there that next Monday with Dr Davis PRESENT. Jeremy's family was in town, so the girls stayed with them, but we took Veiyah.




Dr. Davis told us that the Glenn surgery is no longer an option. That he really feels like the outcome of that would only be "devastating". That the only thing he feels might work for Veiyah, is yes, a transplant. Then he went on to tell us that we need to really embrace life...enjoy Veiyah...

We do enjoy Veiyah.



WHY ARE YOU SAYING THAT?






...Because he is only a man. He cannot tell us if this will work. God has given this man the abilities that have saved our daughters life time and time again. But he takes no credit. He is a humble man and does say thank you when we tell him what a great job he does. But he is an honest, humble, just another man in this world. He can't ultimately save Veiyah. God has orchestrated her life thus far, not the Dr's.

So, our Mighty God has yet another concert to conduct. We will watch in awe with every raw emotion that His instruments resound.

And we give you the details. Details that even we aren't sure of, but might give you a peek into Veiyah's future...



Last Friday, we met with the cardiologist who oversees the pediatric transplant program at the University of Iowa Hospital. As we learned from the chief pediatric surgeon, we already knew that all reconstructive options for Veiyah’s heart had been ruled out as viable options for her at this time due to the high pressures in her pulmonary arteries. So we knew that a heart transplant was her only option going into this meeting.



We met with the doctor for about 2 hours. He had several pieces of information that he was required to cover with us, including statistics on survivability rates over the years. We also covered a lot of information regarding the process of qualifying for the transplant list, what status she may be at on the list, and what to expect during and after the transplant. The meeting itself was very informative and we learned a lot of information. I will cover a few aspects of what we learned as I understand them.



Before Veiyah could be placed on the transplant list, the hospital will have to qualify her through our insurance company to make sure they will cover it. Veiyah also qualifies for Medicaid as she is considered to be handicapped due to her heart condition. So that insurance may come into play as well.



The next step in the qualification process is that Veiyah has to have blood work done. I don’t fully understand this, but Veiyah could have certain antibodies in her body that would not be compatible with certain hearts, even if the blood types match. So that information has to be ascertained at the start of the process.



Veiyah has a blood type of O. According to the doctor about 40% of all people have this blood type. This blood type is a universal donor type, but as a possible recipient, Veiyah can only receive a heart that is also type O. This limits the potential hearts that Veiyah could qualify for.



The doctors would need to determine what status Veiyah would be on the list. The highest status is 1a which is usually for people who are very sick. This status can also apply to people who are taking a certain type of heart medication as a specified dosage. Veiyah is currently not taking this type of medication but as part of this process the doctors are going to review her situation and determine if she should be on it. The next status is 1b. Veiyah may qualify for this status depending on her weight and what percentile she falls in. After that is status 2, which at this point would seem to be where she would be placed at.



Possible donor hearts for Veiyah can be 20% less than or 50% greater than the current size of her heart. Which puts the age of possible donors about 1 to 5 years old.



There is a panel of several doctors who will review Veiyah’s situation and make the final determination as to whether she qualifies. If any doctor does not agree that she should be on the list, then she can’t be. If Veiyah does qualify for the list, the antibody information, blood type, size, weight, location, and status are fed into a national database. When a donor heart becomes available, the database searches for matches based on these factors within a certain geographical range from the donor. After removing the heart from the donor, it has to be placed in the recipient within 4 hours, so location is key.



If a match was found for Veiyah, a surgeon from the University would fly to the donor to inspect the heart and make sure it is viable for a transplant. If it is, we would receive a call and would immediately have to bring Veiyah down to the hospital. Once there she would be prepped for surgery while the donor heart was being transported to the hospital. As soon as it was close, Veiyah would be put on bypass and prepared to be ready to immediately have the heart inserted. From what we know, the heart would have to be placed in backwards to match with how her heart is currently situated. The procedure would be complicated and risky due to her anatomy, but the surgeon did say he thought he could do it. Which is a positive thing. After a transplant the typical recovery time in the hospital is 2 weeks, but we were told for Veiyah it would likely be 4 weeks.



I will not get into the details of post transplant care and medication. But at a high level, the average life of a transplanted heart is 10 years, while there are cases of people who have made it over 20 years. After that, additional transplants are required. Veiyah would likely be placed at the 1b or 2 status. Given that there are only 250 heart transplants done a year, and that there are currently 2 other kids at this hospital with blood type of O waiting for a heart, it could be years before a heart would be available. In that time Veiyah would likely have to have another surgery to increase the size of her shunts, and possible catheter procedures to balloon the SVC.



So there is the raw data. It was good to get this information, however, after leaving the meeting the reality of what we were discussing and facing hit us, and it felt like, yet another kick to the gut. And now the real kicker, Ani and I have to make a decision as to whether we want Veiyah placed on the heart transplant list. Right now Veiyah is doing well, and she could live for many years with the occasional surgery to increase the size of her shunts. But each of those surgeries is risky, and the end result is the status quo. Which means her blood oxygen level would stay in the 70s and low 80s. Over time this situation can lead to blood clots and strokes. Not to mention that her growth and development will continue to be hindered due to lower than normal oxygen to her brain and organs. So it seems on the surface that it would be an easy decision to go the heart transplant route. However, once she is on the list if a heart is available then its go time and we don’t have the time then to make any decisions. So we decide now how we want to proceed. The dilemma is that if we don’t put her on the transplant list she could live many more years in her current state. But if she undergoes a transplant soon, she could die during that procedure. So Ani and I are faced with a decision right now that impacts the life of our daughter, not knowing anything that the future holds. Sorry, but no parent should have to do that. But we have to, and we are going to be making that decision in the next week.



I still cannot comprehend my little baby girl having her heart cut out and replaced with another one from a small girl or boy who has passed away. How does one even pray in this situation? How can I pray for my daughter to get a heart which will improve her chance at life, when that means that another life has to end in order for that to happen? I can’t. No life is greater than another. I will continue to pray for complete healing, and anything after that I will leave to God.





I can’t express in words the emotional, physical, and even spiritual strain that Ani and I are both under right now. We both feel close to breaking. Most days it is all we can do to just zombie through the day. ...God please give us a break.

If you choose to pray for our family, please focus first on Veiyah as she is the one living this trial day to day. My heart breaks daily knowing that this is her life, that she will be hindered by her physical condition for her entire life, which most likely will be shorter than normal. I only find hope in the fact that this life is not the end for her, and that one day she will have a new perfect body in eternity. Please also pray for Ani and I, that we make the correct decisions regarding Veiyah’s medical care. And that we would start to feel the burden of this decision and Veiyah’s reality lift from us. We really need the peace of the Holy Spirit to fall on us, displacing fear, uncertainty, anxiety, and depression. Thanks as always for your prayer.

A hope we hold onto for now...Please listen with Veiyah in mind and in heart. Also, say a prayer for Jeremy and I and our 2 older precious girls...as this is our life to the tee and as we hope for what is to come.

CHD Calendar 2010
Designed by Heidi Schmidt
With all proceeds to the
American Heart Association.

Veiyah was the the Month of May. Very fitting as we went through most of these things during May.