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Update 6,422 (or something like that)
I may or may not have been told by numerous people that it’s time to update. So here is my excuse, finding time to sit at the computer without sticky fingers around, is extremely difficult. I often update on Facebook because it’s easy to do quickly while sitting at the hospital. But tonight, all the stars finally aligned and I am sitting in my mom’s hospital room at midnight, things are quiet, and I remembered my computer. I know. I know….shocking. I just might get this update finished.
Now where to start, there is just so much that has happened since Evie’s surgery and Ben’s birthday.
Let’s start with EVIE and the new word I learned yesterday.
Arborization. Isn’t that a lovely word? Truly it is. You can take my word for it. Eight weeks ago, Evie had a BT shunt placed. After a scare where she clotted off her shunt, and an emergency trip to the cath lab, she has done wonderfully. Four weeks ago, we had an appointment where we discussed the fact that her oxygen saturations were still in the high 60’s. Dr. Divekar was not thrilled about those numbers and said that he was quite concerned that she wouldn’t be a candidate for the Glenn. I went home upset and called Dan, who was away on a business trip. He said with great certainty, “I don’t believe that. I think she will do wonderfully and I believe this is due to her pulmonary emboli from the clotted shunt.” He is usually right so I was relieved.
The hope after surgery was that with more blood flow to her pulmonary arteries, they would grow, which would make her a better candidate for the Glenn. Wednesday she had her follow-up heart cath and we got wonderful news. The left lung is still not getting much blood flow, BUT the right lung is getting plenty of blood flow from the shunt. Her right pulmonary artery grew 2 mms wider in 8 short weeks. But the best news (and I wish I would have thought to get video) is the arborization in her lung. What that means is instead of there being very limited blood flow as the blood comes out of the artery, there is what looks like a tree. The artery being the trunk and the vessels coming off the branches. It was such a beautiful sight. On top of that her pulmonary pressures were down. All of this means she is a candidate for the second stage surgery, the Glenn, in the next 3-4 months. And all of that means she has a chance for a longer life. Praise the Lord!
She was a trooper. After being scared initially, she laid flat and took a nap. Laying flat for six hours is no small feat for a two year old. She charmed everyone when she woke up by blowing kisses and waving good-bye. She is such a beautiful soul.
LAINEY AND JASMINE
Last night we had an appointment with neurology for Jasmine and Lainey. We haven’t had a lot of information before this. We pretty much know their diagnoses based on the information we have before us. We just don’t have all the testing behind it to have a medically conclusive test giving us a definitive diagnosis.
We have been trying to get Lainey to settle in and see where her base-line is going to be. I think we are finally there. I will say that most of the time she is a happy girl. She has started to have some purposeful play. She giggles and runs and plays. She even understands to bring her lips to yours for a kiss. She has started making some sounds and that “mmmmmaaa” is going to be mama very soon. Her diet has been the easiest thing to handle, which is funny because it was my biggest fear. Truth be told, I wish we were only dealing with what I was initially concerned about. Temper tantrums over not being able to have McDonalds would be much preferred over PTSD nightmares that send her into a not really awake state raging for 30 minutes or more. The good news is that these are not daily occurrences any more and they rarely happen during the day. She is still having seizures that are short in duration and happen many times during the day. She also doesn’t sleep for any long periods of time. This has been the hardest on our family. We all take turns doing the “Lainey shift”. She sleeps for maybe 3 hours and then wakes every hour on the hour. This isn’t a you can just let her play in her crib or cry herself to sleep issue. If you leave her alone, she will rage. It’s not a good thing. When Lainey is awake, you are awake. She gets up for good any time after 3:30 a.m.
They are going to schedule a 24 hour EEG for her to try and capture her seizures. If you’ve met Lainey, you know that this is going to be a most enjoyable stay (truly wish I had a sarcasm font). For those of you who don’t know Lainey, let’s just say that it took 10 minutes and three people to hold her still for me to trim her bangs.
Look at that smile! She is a beautiful little girl who is improving each and every day. We’ve come so far in the five months since she has been home. Truly we have. I don’t know where she will end up but the little girl you see today has made so much progress. We have hope that she will continue to improve.
Jasmine. Where do I start? First off, we know it is some sort of muscular disease. She has lost so much muscle tone already. They need to do a muscle biopsy for a definitive diagnosis. Her scoliosis is starting to hamper her comfort and it is thought that we will have to do surgery in the next 6 months. For those of you keeping track, that will be at least 4 heart caths, 4 heart surgeries and a major back surgery in 6 months time. And no I’m not complaining. I’m just stating the facts. Sometimes it is a little overwhelming. It’s a good thing I can do all things through Him who strengthens me because this is so much more than I can handle on my own.
The hardest part for me with Jasmine is just the loss of dreams. They will have a mandarin interpreter for her when we do her echo, pulmonary function test and see ortho. Jasmine wants to run. She wants to play. Instead of saying “Yes, we can fix this.” We have to tell her that she has to have a 6-10 hour surgery that will require that she lies flat for six weeks. I hate making her cry. She is such a happy girl with a wonderful smile. I love to make her laugh. I love to see that smile spread across her face. I don’t want to take away her dreams or disappoint her in any way.
She knows though. I know in her heart she knows the truth. I know this because Gracie has told me that Jasmine said she doesn’t want to be in the hospital like nana. She doesn’t want to be sick and she is scared. I’m happy we adopted her despite the pain in my heart for what she will have to endure. I feel blessed every single day that I get to be her mama. She really is a very special little girl. When people say, “I don’t know how you do it. I could never do that.” I believe they are missing the point. Because when you take your eyes off of yourself, then you know the truth. It doesn’t matter what I can do. The point is Jasmine will not be going through all of this alone. She may lose all ability to move, but she will know she is safe. That is what it is about. Jasmine. It’s all about perspective. You can feel sorry for yourself or you can feel blessed for being a part of a much bigger picture. A brighter future for a little girl who deserves to be loved with great abandon until the day she draws her last breathe. She should feel safe and loved and cared for. It’s not that Jasmine deserves more than other children. The truth is ALL children deserve the love of a family. The fact that we, as Christians, have lost sight of this fact breaks my heart.
Jasmine just wrote an essay for our upcoming six month post placement report. China has six questions they want you to answer. Cassie can read enough Chinese to get the gist of it. Jasmine stated that she loves her family. That she is very happy. That she loves school. She is doing remarkably well. We started school in September and we are through Kindergarten and first grade and well into second grade. She can write and count to 100, by twos, by fives, by tens. She can read some. She can add and subtract. She is a very bright girl and is excited to learn.
BENJAMIN
Benjamin has a heart catherization scheduled in Boston on the 28th. His has been the hardest decision to make. There aren’t many five year olds with uncorrected transposition around. It is so hard deciding what to do. Is it overkill to take him to Boston? Maybe? I don’t know. But when it comes to your child, you want to give them the very best chance that you can. You want them to be operated on with the most experienced hands you can find so that is what we are going to do.
Ben is not happy about surgery. He is a smart boy and knew something was up. When we initially started discussing this with him, he told us that Eli could have surgery but he was fine. He finally agreed to surgery as long as it could be performed at home. Now he says he will agree to surgery in the hospital as long as Spiderman performs the surgery. This came after he saw this picture from another heart mom’s blog.
Ben loves his superheroes. He dresses like Superman when he goes to the hospital. I think if the surgeon dressed like this, Ben would happily go into surgery. I wonder what the odds of talking the doctor into this would be?
MY MAMA
Which brings us to my mama, we are still in the ICU. She recently had a liver biopsy to try and figure out why her bilirubin just doesn’t want to come down very quickly. The good news is that her liver is not in failure. It is just in shock. She doesn’t feel like eating. She is very weak. She is in pain and can’t take any medication because her liver is not functioning well and her kidneys have failed. She is very weak and has a long road ahead of her. The good news is that she should get there. The bad news is she is beyond frustrated. On top of that, she gets confused and keeps trying to get out of bed. So far we have had two falls out of bed in the ICU. No injuries but she is scaring everyone.
FUN TIMES
As you can see, we have settled into our new normal and life is just smoothly moving along. (Still can’t find the sarcasm font.) Truly though, I love the noise and the chaos of it all. I love looking out into my sunroom and seeing the five littles play together. I love seeing Jasmine and Gracie all snuggled up in bed watching you-tube videos and singing. I am blessed to have Cassie and Zach still be here and willingly help with my mom and all the others. I am blessed to have Dan’s mom help out with the kids so I can be with my mama. I am blessed that no matter how much happens in our lives, Dan and I know who is in control and rely on each other to make it through.
It hasn’t all been sad. We have plenty of fun times in the midst of all the struggles.
We went to the Renaissance Fair.
We went to the zoo.
We took Jasmine to the Casting Crowns Concert at the Iowa State Fair.
The girls went to the Women of Faith Conference
And the usual fun grocery runs to Wal-Mart which get us many comments from “You have your hands full.” to “Are you running an Asian day care?” to “Where did all these kids come from?” Never a dull moment at our house!
Thank you for taking the time to ask me how it was going and to truly be concerned about our family. As always, thank you for the thoughts and prayers.
