Dear Family and Friends,
I need to write you with some hard news. I will give you the bottom line first and then I will also include the long explanation after that for those who are interested. You will have to bear with me. I originally wrote most of this email 4 days ago and was not expecting to have to send it out so soon so now I’ve had to drastically revise it. The bottom line is that Julia is dying. She has only a few days to weeks to live, most likely. We have known she could have a fatal heart disease for 3 weeks, but did not know for sure and we (nor the doctors) EVER expected that she would decline so rapidly. If we had known this, I would have sent this email out much sooner. She is currently in the hospital. I know this is devastating and shocking news. It is to us, too. We are coping. I truly believe that we are only rational right now and able to cope at all due to the prayers of all of you. Even when you didn’t know what was going on. God did. He heard EVERY prayer and He has been with us every painful step. We desperately need your prayers now! Please feel free to email but please don’t call at this point. I would love to know you are praying and thinking of us. Please understand, we will not be able to respond to many/any of them. It is hard to break away from Julia even to write this email. We are really going to need you once Julia is gone. She gets to be whole in Heaven and we are going to be left missing her. Please do not share anything with your younger children at this point. We are seeking counsel on how to handle things with Mattie and we don’t want her finding out anything from the comments of any of her friends. We want to be able to handle talking to Mattie ourselves. All right, this “bottom line” is becoming very long. I will continue to update her blog and update when I have a chance if there are any major changes. I might be silent for a while due to wanting to spend every spare moment I can with my beautiful daughter that I am going to have to say goodbye to… but it is not goodbye forever. One day we will be reunited with her and that will be a glorious reunion. She is going to meet her other 2 siblings whom I did not get to meet this side of Heaven before I will. She is going to be whole and she is going to be with Jesus. That is the good news.
Prayer requests…
• That we can make all the needed decisions and plans for the end of Julia’s life and for after she has passed away.
• That Julia would stabilize enough to be able to come home for a few days so we can enjoy some time together as a family
• That God would prepare and protect Mattie’s tender heart. She loves her sister so much.
• That the child psychologist would be helpful to us in preparing Mattie. We will be meeting with just her and then with her and Mattie all together in the next 2 days.
• That God would be giving Julia peace and comfort until she goes Home to Heaven.
Some logistical requests…
• Please do not call right now. Feel free to email us. However, we probably won’t be able to get back to you right away. Thank you so much for understanding.
• Please do not send flowers at this point. We just can’t manage them right now and we are not spending very much time at home to be able enjoy them anyway.
• If you would like to bring a meal, please sign up on our Mealbaby link. http://mealbaby.com/viewregistry/6406975
• At this time, we will not be able to have visitors at home or at the hospital. We are truly sad that so many of our family and friends will never get to meet sweet Julia.
The long explanation:
About 3 weeks ago, after the biopsy of Julia’s heart came back, a cardiologist on the heart failure team at Stanford told me that it was looking like a strong possibility that Julia had a heart disease called cardiomyopathy. Cardiomyopathy is a disease of the heart muscle. The type Julia would have is dilated cardiomyopathy. Dilated cardiomyopathy is a condition in which the heart becomes weakened and enlarged, and it cannot pump blood efficiently. The decreased heart function can affect the lungs, liver, and other body systems. It was something that they could not prove. There is no blood test or diagnostic tool to confirm it 100% other than a genetic test (and that is not 100% and takes 2 months to get results back.) We did end up getting Julia tested but obviously don’t have those results back. The way they might “know” more definitely is by Julia’s general condition. If she improves, if she gains weight, if her heart function improves… all of those could be a sign that she had an infection in her heart (recoverable) and not this heart disease (not recoverable.) The thing that baffled them, however, is that they have never seen the combination of Down syndrome, AV canal heart defect, and this rare cardiomyopathy all in one person before. The cardiomyopathy has nothing to do with the fact that Julia has Down syndrome or an AV canal defect. Cardiomyopathy is one of those weird things that can show itself early or late in life. However, in children, about one-third recover completely, one-third recover but continue to have some heart problems, and one-third die. The only real cure for this is a heart transplant. And unfortunately, no person with Down syndrome has ever survived a heart transplant. Since Julia has Down syndrome she is not a good candidate for one. And now, Julia does not even have enough time to find one if we wanted one.
So for the last couple of weeks, we’ve been holding our breath. Friday the 27th, the doctors and other medical professionals on Julia’s case sat down with me for a meeting. The cardiologist feels much more certain now that Julia indeed has cardiomyopathy. Julia had been showing slight improvement for a little over a week. However, this last week, she has shown a decline in her overall function. She was struggling to self-regulate her fluids in her body, she was having more breathing difficulties, and she has not been able to gain weight in about 3 weeks (it just goes up and down and has overall lost weight in the last 3 weeks.) She has been sweatier which is a classic symptom of heart failure. They did find a balance of medications and they were able to send her home on Saturday. However, over the weekend, I had been noticing that she was working very hard to breathe. She would make little “sighing” noises with each exhale. When we went in Tuesday (yesterday) for her follow up cardiology appointment, it was decided by 2 cardiologists on the heart failure team that she needed to be readmitted and monitored. I had a sinking suspicion she was doing worse.
What is her prognosis? Originally, (last Friday) the cardiologist gave her a range of 2 to 12 months with 12 months being generous. After listening to her breathe over the weekend, I started coming to the realization that it could be more like 2 months. She just didn’t sound good to me. The goal was to balance her medications (she is on 10 of them) as best as possible and have her home (and out of the hospital) as much as possible. Bob and I both agree we want quality not quantity of time with Julia. We are still hoping to get her back home so we can have some time with her before she dies. But now we’re down to days or maybe a week or two. So we’ll have to see.
How am I? How is Bob? I don’t know. We are in shock. We are numb. We are devastated. We don’t even know how we are doing. We are in crisis/survival mode. We are meeting with a team of people, including a child psychologist, to help us with end of life decisions. We are doing what we “have to do.” My mom arrived this morning and Bob’s mom will be flying out to support us also. Julia is working so hard to breathe even now… it is so hard for me to watch. Seeing her sweet face and thinking about all she has been through already and then thinking about losing her is almost more than I can bear. We don’t want her to suffer any more than necessary! I already have done some grieving when I first heard the potential diagnosis. I have been “preparing” myself these past 2 weeks but had remained a little hopeful. There’s no way to really prepare when you are in the reality of losing your little girl.
What about God? Well, since getting the possible diagnosis, I have mostly been praying for God’s mercy in this situation. I know that God could heal her completely. However, I also know that He knows the big picture. The main thing I prayed is that I didn’t want Julia suffering or struggling long term. I did not want to spend the next several years in and out of the hospital. That is no way to live for her or for us! I don’t understand why God allowed her to be born only to take her away so quickly. However, her life has been meaningful to us and to many others. She impacted people even before she was born. I know God has and still can use her small sweet little life no matter how short. I wish that we didn’t have to experience the pain of losing her. So I guess what I don’t understand is why did God allow US to have to go through this or why JULIA had to endure this. That I may never know. I do believe He will walk beside us the whole way - even on days when I am angry or beyond sad. I am glad I got to meet my sweet girl - my baby with red hair and fair skin and steel blue eyes. She is so beautiful. She is so alert and expressive. I am very sad I don’t get to see her grow up. I just wish I could protect my husband and my daughter from pain. Especially Mattie! I have no idea how losing her sister is going to impact her life. I may not know for years and years. That breaks my heart. I wanted her to have a sibling so badly. She loves her sister so much. For that I am angry at God. For that I don’t understand. Why God would take Mattie’s only sister away. That is hard for me.
So there you have it. It sucks (an understatement.) It is going to be really, really hard (another understatement.) We are loosing our baby girl. It is something I never thought we would have to go through as does no one.
We will be in touch with ways you can help us. We are going to need you. For now, we need you to PRAY!
We love you all and we are so sad we had to write you with this news.
Val, Bob, Mattie, and our precious little girl, Julia. Our sweet little girl who God allowed us to know for just a short time before taking her Home.
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