It seems as though time is marching on with or without me blogging! Iyiyiyi. I have the best blogging intentions, they just never seem to work out. Oh well. Just wanted to record some of the things that has been going on the past few months.
We have had been on quite the roller coaster since the beginning of August. I just reread my last post about my crazy day with the Goose. Little did I know how crazy our whole life was about to get the very next day. Looking back, that day with the Kenser doesn't seem so bad now.
August 3 was Maddie's yearly cardiologist appointment. Let me rewind and bring you up to date : Maddie was born with a hole in her heart and we see a pediatric cardiologist once a year. This is not something that is uncommon as many people are born this way. In fact, they told us when she was 6 months not to worry about it because most of the time the just close up on their own as the child grows. But last year at her yearly physical the doctor was listening to her heart and heard her heart murmer pretty vividly and suggested we see the cardiologist again to get it checked out.
So we made the appointment and saw him last summer. He did an echocardiogram and saw that
her hole had not closed up like they initially thought it would. After checking her out thoroughly, the plan he made was for us to come see him every summer to take 'measurements' on her heart and keep an eye on it and when she was older we would decide what and if anything would need to be done. The impression we got was this really wasn't a huge deal and she would probably be just fine living her whole life with nothing ever being done.
So back to August 3rd. Maddie and I go for the appointment. I was expecting to pretty much hear the same thing as last year. I was extremely anxious to get it over with. We went in and Maddie helped hook herself up for the EKG. She enjoys putting the stickers all over her body...haha. And then we went in the room for the echo. He looked her over for quite sometime and kept checking and rechecking things. I was growing a bit antsy because he wasn't just saying, "ok got the measurements. See you next summer. "
Instead he said that he was concerned a bit. What he found was that the right side of her heart had gotten slightly larger since last summer and that he had tried 4 times to find the pulmonary valve return to her heart and just couldn't see it. My heart just sank. Never in a million years did I dream he would say such a thing. I tried to keep my composure (mostly for Maddie who was sitting right there) and ask what all this meant. He explained to me that her heart could possibly be abnormal and not have the all 'the right parts' as well as some of her blood was flowing in the wrong direction and he couldn't see how it was getting there. He said sometimes people can have whats called "anomolies"(sp?) which is basically strange or not -normal vein that grows.
I literally cannot explain the feelings that came over me. I felt like in that instant my whole life had changed. I just remember thinking, "we got to get out of here. And NOW." I didn't want to sit there a second longer and listen to anything else. I couldn't imagine the things he was saying were true about my precious, little girl. I wanted to run out of there with her and protect her and keep her safe and never let any doctor tell me something like that again.
Instead, I calmly made a 'tentative' plan with him. He explained to me that he thought we needed to do some sort of intervention now and not wait any longer. I asked how soon he was thinking as in a year or 2. He said possibly by Thanksgiving. Talk about getting hit by one truck after another. First he wanted us to have an MRI done at UVA so we could get a solid idea of what the anatomy of her heart actually was and then we could talk about whether she would need open heart surgery or if they could repair the whole by catheterizing her thru her left leg, which is MUCH less invasive.
Its crazy how literally a 30 minute doctor appointment can turn your world upside down. On the ride home, Maddie was asking some questions about what he had said. I was just honest with her and said yeah you may have to have surgery because of that hole. She asked why and I explained if we went ahead and got it fixed we wouldn't have to worry about it anymore. Her response to me was, "Worry? Why are you worried about it?" I love her innocence. She has always just accepted it as part of who she is and its never crossed her mind that it may be worrisome. How I wish I could just protect her from all of this. So I explained a bit more and told her that we were just going to pray for her. She said, "Well if Jesus knows my hole is there, can't He just fix it?" To have the faith of a child. Leave it to my 8 yr old daughter to get my mind and heart back on track. Because let me tell you, fear and terror were pulsing through my veins pretty much since the doctor opened his mouth. But her Maddie, who sat and listened to everything had the simple solution of lets just pray for healing. Bless her. I told her that was exactly what we were going to do and thats where our focus would stay.
When we got home, I just went straight to my room and shut the door and literally wept. Never in my life, accept for when Maddie was born prematurely, had I felt so utterly helpless. I came undone. I thought it was unfair and I was mad and terrified and angry. Questioning how could God allow this to happen to my little girl. She had come thru so much in her short life and now she was going to have to walk this painful road.
Aaron came in and just hugged me. He is such a rock. Solid. Unwavering in his faith. He told me we were going to be fine. That God wasn't shocked by all of this and that we would pray for her and no matter what He was with us and would walk with us thru whatever happened. He prayed for Maddie and for us and then he had to leave for work....ack! What a gift he is! A treasure given to me. A true man of God. I'm blessed.
I called my dear friend Beth and poured my heart out to her. It was so good for me to just talk about it and cry. She has walked beside me these past two years thru all the craziness and has been an incredible friend. There was something so good about just saying it all out loud to someone....kind of took the power and some of the fear out of it for me. In my mind things can be so huge and I get fearful and irrational and want to keep it all inside. So I knew I needed to just get it out there and talk about it.
Never could I have imagined when I got up that morning that by the time I went to bed my whole world would be so shaken. As I tucked her in bed, I struggled not to cry and wonder if she was going to be ok. If she was going to make it. I wanted to just hold her tight and never let her go. My mind was going crazy. But I was also trying to keep all these emotions in check so I didn't scare the poor girl.
It was a rough few days for me. I struggled with fear and anxiety like crazy. I had to choose what my mind was going to dwell on. I had to speak truth to my spirit.
Two days later, we were finishing up shopping at Costco and my cel phone rang. I answered it and it was my sister. She said that something terrible had happened and that we had just got word that my cousin, Brian, was one of the ten medical aid mission workers killed in Afghanistan. Brian. Sweet Brian was gone just like that.
Life, I have learned, is so fragile. In a moment it can be shattered. But thru all of this, its amazing how I have seen and felt God at work. The devastation our entire family felt and continues to feel to this day is unthinkable. I saw God in how Brian went Home serving and loving others to the end. I saw God when I was at the graveside and looked at my aunt's face and saw a grieved mother, yet there was such a peaceful look. I saw God when at his graveside service his parents and brothers and sister read a statement of how they forgave his killers, just as they had been forgiven by God. I saw God when I read Brian's facebook page with tears streaming down my face at all the lives he has touched. He was suddenly everywhere I looked even in the midst of all this craziness. And it was comforting.
God walked me thru the next few weeks. Or I think it would be better to say he carried me. I was feeling overwhelmed with everything. I had only had my Thyroidectomy surgery a week and half before Maddie's appointment, so i was still recovering from that and had appointments at UVA for me. We also had Kobe scheduled with an ear specialist at UVA because his ear drum hasn't ever healed from being burst a year and a half ago. And then we had Maddie scheduled for her MRI on September 17. I had to mentally just get thru one thing at a time. So I was a little on edge, or maybe a lot on edge, until September 17 finally came.
This is a note I posted to all our friends on Facebook who had been praying for us:
THank you all so much for praying us through these last few weeks. It has been a stretching time for all of us and especially me. Today we had Maddie's MRI at UVA. We had a good visit and she did fantastic. She was so calm and not scared or fearful at all. As I was talking her thru what would happen last night and going over how they would put her to sleep and wake her up and all the details she said to me, "Is it ok that I'm a little bit excited about tomorrow?" hahaha. Only Maddie!
She responded perfectly to the anesthesia with no complication at all. The MRI was about an hour and 45 minutes. So the results are all of her valves and pulmonary veins are present and functioning prorperly. I could have cried when he told me that. It has been weighing so much on me since the initial echo when the cardiologist could not find the Pulmonary Valve return and obviously would have been a much more complicated case of having to reroute veins and put in shunts. So basically her little heart is just perfect, minus the little hole she has at the bottom. And the only way to fix this is thru surgery, as they suspected. Evidently, where her hole is is pretty rare and only 5% of people with holes in their heart (i'm sure their is a more technical term for that, just don't know it!) have it located in this region. But it is 100% fixable!!! Thank you Jesus!! He said its a small enough hole that he feels the surgeon may even just be able to sew together instead of having to put a shunt in. This will fix the issue of her blood flowing in the wrond direction and causing the right side of the heart to be larger. He even said that probably a few months after the surgery the right side may go back to normal size.
So, surgery it is. He said their isn't an immediate urgency and if we wanted to wait until next summer he felt that would be fine. Obviously, the final word won't come until after Wed when he takes the results back to the team of cardiologists that meet to discuss cases and they collectively decide the best time. I asked what would happen if we did nothing and he said there's a possibility she could live her hole life and be fine OR that over time she would get pulmonary hypertension that would be irreversible and that results in a 25 -30 yr old having cardiac arrest, heart attacks, etc. In other words not good stuff. This is a preventative surgery for her future to fix this problem before she becomes symptomatic. If they all agree, we have decided to do the surgery next summer. This seems like a much easier time than rushing to have it done this fall. That way she will have the summer to recover and little Presley won't be so little anymore and will be able to be away from me for a week or two.
I feel a total peace about it, which is a miracle in itself. I would be lying if I didn't say I have had days of being a total wreck in my mind the past few weeks so to feel this peace is a breath of fresh air and definitely God at work. God is so good to us and has been so faithful. We know He will walk us thru this next leg of our journey. Thank you all so much for your prayers. I have felt them in such a real way. Thanks also for caring and all the calls and emails. We feel surrounded and not quite so alone in all of this. We are so thankful to Jesus who loves our little girl more than we do and has had His hand on her life since she was born. She has been thru a lot in her short life and she is a fighter and I know this will be no different.I cannot explain that type of relief that flooded me when the doctor said her heart was normal except for the hole. What an answer to many many prayers. So as of now, the plan is they will call us in May and we will schedule pre-op appt and we are planning to have her surgery the beginning of June so she has the whole summer to heal. I still hate the thought of this surgery. The doctor explained to me that its a pretty straightforward surgery once they get in, which is good. But the thought of how they have to open her is still a little to much for this Mama to bear. So I'm just leaving it in the Hands of my Father and not trying to carry that burden thru all these months. He will provide for us.
One other story I want to write about before I end. I'm recording this for Maddie because I'm sure she will love remembering this when she reads thru this when she's older. We had to be at UVA the morning of her MRI at 5:30am. It was very early and we were all a bit groggy. The nurse came and called us back. We were in the room and Maddie was on the bed and the nurse was explaining how they would put her to sleep and what they would do, when all of a sudden her pants literally dropped down around her ankles. It took her about 5 seconds to realize it and Aaron and I were just speechless. We didn't know what to say. Bless her heart, once she realized she jumped into action putting herself back together. I felt so, so bad for her, but I was literally having to bite the inside of my cheek so I would quit laughing. And Maddie was just watching it all in amazement. It was just the funniest thing. We are having this serious conversation and then suddenly her pants are not there anymore. hahahahhaa. Talk about a great icebreaker. She had scrub pants on and evidently she hadn't tied them tight enough. She was a good sport about it all and apologized all over herself. But man, it was funny. And when people asked us about how things went at UVA, that is the first thing Maddie told them about. Classic. :)
We have talked to Maddie about the surgery and what will happen. I don't think she fully grasps the seriousness of it all, which I'm grateful for. She's excited to be able to order food there and watch movies all day. :) Her doctors are top notch and we feel very confident in them. I know God may use these very doctors to bring about healing in Maddie, but as I have told Aaron, until they wheel her away to the OR this mama will be praying for Jesus to completely heal her heart before that.
Oh, and I seriously have peace. Its crazy. Sometimes I feel like "I should be more worried than this. Why am I not freaking out? " But I know that is God. His peace is deep inside me. And it feels so good.
It was so funny and the kids were laughing so hard , which just delighted her. It was so cute. Even thru the humor of it all, Aaron prayed that she would always have such a spirit of worship thru her whole life. And to that I say a great big AMEN!
