Archive for the ‘Evangeline Faith’ Category
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Blessed Beyond Belief
I stood outside in the corner of our walking path and cried tears today.
Maybe it’s because the talk I gave this weekend brought so many memories to mind. Maybe it’s because I wish my mama could have been there and I miss her so much. Maybe it’s because we are waiting to hear from sweet Kelly. Maybe it’s because I keep seeing picture after picture on Facebook of children just wanting a family. Maybe it’s because the world is so unfair to so many children and I can do so little.
For whatever reason, the tears came but they didn’t diminish the wonderfulness of what my eyes saw. Happy children playing outside in our big backyard. I remember a couple of years ago when Dan and I were regretting buying the acreage, with all the upkeep and mowing. Regretting the remodeling we did on the house and having spent money that we would have never spent knowing what we know today. My brother, my son, and I (but mostly my brother) put in a 600 foot walking path in our middle acre. It wasn’t getting much use. We hadn’t done the tree and flower planting that we should have. We wondered if God was asking us to sell the house. But selling just didn’t seem right so we stayed and now we know why.
Now the yard is a giant play place where I get to see the little girl who ten short months ago sat on a floor in China raging, pulling out her hair, so unhappy, with us wondering if she could ever be happy and feel loved, run across the open ground with a look of pure joy on her face as the wind whips her hair.
I get to see the little girl who weighed six pounds at six months, thrive! The little girl presented to us as deaf and unworthy, blossom and grow and blow out of the sky any of the limitations I thought she might have. She is so much more than any of the descriptions on paper. She is a fighter and loves with all her heart. She is a beautiful spirit in a tiny, strong, little body. She is smart and pretty and helpful and such a little mama.
And how can I look at Jasmine and not think of where she would be? I watch her speed around the path, hair flowing in the wind, a huge smile on her face, enjoying every moment of freedom that her hot pink powered chair brings her. I want to say slow down and then I remember all the limitations others have placed on her, all the pain, the wounds and scars, and I cheer her on instead.
I look at little Miss Evie. The girl they told us only had a few months left. I’ve had ten months with this beautiful soul. Ten months of love and laughter. There have been tears, fear, and restless nights, but to watch her run and play, to be allowed to be a part of all that is the miracle of her…..I am completely and utterly blown away and so undeserving.
Which is why the tears flowed. Why am I so blessed? Why should I be allowed to call these children mine?
I get to spend time flying kites, getting hugs, and listening to their sweet laughter roll across the wind.
Jasmine is free and happy. Secure in the love of her family.
My older children are happy. We’ve had much to celebrate.
Photo courtesy of Wunderkind Gallery
Benjamin! Where do I even start with Benjamin? Before his surgery he couldn’t run around our sectional without being winded and now he is doing 5, 6, 7, or more laps around the path. You can hear his laughter and his little bell ringing around every corner. Every time he goes past me he yells, “This is so fun mama!” His little legs pedal faster and faster as he zips around the path trying to catch Jasmine and Gracie.
The joy on their faces is unmistakable. Maisey and Ben’s bond grows deeper and stronger with every day that passes.
Then there is the little guy. He is this tiny bundle of rambunctiousness that is just so much FUN! I don’t know what we will find out in May but he is so worth it all. I can’t even explain what it is to watch him run and play. He is the perfect little bundle of boy and my heart overflows with love for him.
Little Lainey secure enough to fall asleep in the sun.
Little Evie running to my arms.
Blessed to have spent over 30 years with the love of my life who shares my dreams.
Standing in awe of the little bundle that started this whole adoption journey. A baby. A gift straight out of no where. Who gets gifts such as these?
Others ask us how can you do this? Aren’t you tired? What were you thinking? What am I thinking?
I.AM.BLESSED!!!!!
That is what I am thinking as I stand there with the tears flowing down my cheeks. Blessed at this family that God has made. Completely and utterly humbled by the God who would allow me such a blessing just because I was obedient to His call. What a gift to be given. How do I do this? How could I not?
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Hip Hip Hooray Evie is 3!
It is somehow appropriate that it is 3 a.m. while I write this post. I was awake every day at 3 a.m. in China and that is when I would blog. When we returned home, I still had trouble sleeping during the 3 a.m. hour. It seems to happen to a lot of people when they travel to China. I’m sure there is a perfectly good, logical reason why this happens and if I googled it I could probably tell you why but since it’s 3 a.m., I’ll leave the googling up to you.
All three little girls are awake right now. Maisey because she has finally succumbed to the bug that has wiped us all out during the past week. Evie because she has been having a much harder time sleeping at night. I couldn’t tell you why exactly. I sometimes wonder if God is giving me extra time with her because we spend a good hour together most nights lately. And then little Lainey…she is awake because she fell asleep earlier than usual for her and she has decided it’s play time. Right now Lainey Rae is spinning a toy on the kitchen floor, singing her own little song, serenading me as I write her sister’s birthday blog.
Because I treat all my blogs as my journal to my children, I usually leave their birthday blogs as simple as I possibly can, mainly just pictures and sweet stories and descriptions of themselves. Evie’s blog post is going to contain a bit more.
As I was driving around to my many appointments today, Jasmine for her initial orthodontist appointment, where she ended up having a tooth pulled, and on to Evie’s appointment to check her thumb that she smashed over the weekend. She had a nasty hematoma that just wasn’t healing very well so we decided to have them culture it and make sure there was nothing else going on. In between those we mailed fingerprints, filled out more forms to go out in the morning, and copied more papers than I care to do again for a little while. As I was driving around, I spent my time thinking about what I could write about little Evie.
I talked with many people today. I was asked on numerous occasions about Evie and Eli’s upcoming surgeries. I told people that their surgeries have been scheduled a day apart on opposite coasts, Evie in Boston and Eli at Stanford. Everyone said, “What are you going to do?” It’s a dilemma because Eli’s has already been rescheduled and he is definitely more blue and Evie really needs her surgery too. We have already waited for months for both places. During all these conversations someone said, “That is just too hard on you guys. It’s just too complicated having that many heart kids at one time.” The words themselves aren’t anything big. It’s the truth. It is complicated. It’s just the way they say it. It always seems to come across like Dan and I shouldn’t have done it.
Yes, it is complicated. Yes, this is frustrating. But my response is, “Would it have been better to just left Evie there so Dan and I didn’t have this concern?” Yes, our lives would have been much less complicated had we not adopted these children. Yes, we would have avoided headaches, heartaches, and the very busy days and crazy times. But it’s not about us. It’s about them.
The fact that we got Evie’s file at all was a miracle. We had already decided on two children, Eli and Lainey, but because the orphanage was taking forever to get the paperwork done for Eli, our agency presented us with Evie’s file. I refused to even look at the file because I knew that Eli was my son and we had already sent our intent in for Lainey. Dan looked the file over and went to sleep praying about it. He woke up and told me that he thought God was saying Evie was to be our daughter. Dan told me that he knew it didn’t make sense but he believed that God had a plan and it would all work out. Watching the details unfold over the year with our four children’s adoptions was an amazing miracle in itself. Being presented with Evie’s file was a gift. It was definitely not something I would have gone looking for.
I will never understand God’s timing. I will never understand the waiting and the seemingly unanswered prayers, but I have lived long enough to see that God is in the details. God has a plan and His plan is so far above and beyond my understanding that I don’t question it anymore. I believe His plan to be perfect and I believe God to be trustworthy so in turn I am obedient when I feel that calling. I used to question it and argue with God and tell Him that the plan just didn’t make sense but when you see how things fall into place and in a way that is so beyond anything you could have ever dreamed of or hoped for, well then you realize it’s better to just close your mouth, trust, and wait for His glorious plan to unfold.
When we showed up in China, Evie was a 26 months old, weighed 13 pounds, and could not sit by herself. Evie was a very sick little girl. Evie was also a bundle of personality even though she was so ill. We spent our time in China, having everyone comment on the sweet, little baby and then she would smile that mouthful of teeth and everyone would exclaim, “She’s not a baby!”
Evie is truly a blessing. I can’t accurately describe her little personality. She is a charmer. She is the greeter in the family. She only has to be in the room for a few minutes for people to see her sweet little heart in action.
She has helped heal another soul in our house and their bond is very, very sweet.
She loves her sisters so much!
She is the easiest to correct because just a word breaks her little heart.
This picture was taken right after she ran Jasmine’s wheelchair into the door. She showed her brother the hole in the door and he said, “Evie that was naughty!” Yes, she truly is that heartbroken over just a few words spoken by someone she loves.
Don’t get me wrong she can be feisty as all get out too. I don’t think you can survive in an orphanage for as long as she did, as sick as she was, without some feistiness in you.
But all that being said, she truly is the sweetest little soul. She is the one full of laughter and smiles. She is the one dancing and singing her days away.
She is the girl to lead the way in playing pretend.
She is the girl who hugs everyone good-bye. She is the first to say “hi” when she sees you. She says please and thank you in the sweetest way possible. She is determined and beautiful and a walking little miracle.
In eight months time she went through three heart catherizations, one code, open heart surgery, and still managed to learn to walk. She runs and marches and dances all over the house now.
I can’t imagine my life without Evie. I often think how crazy it was that we got her file but how very, very blessed I am that we did. There are many things in Dan’s and my life that don’t make any sense. I realize that to most outsiders it would look beyond crazy, but I am telling you that you would only need ten minutes with little Evie to see that all of that crazy is worth it.
She so deserved a family. She deserved more than to die alone, on a dirty mat, in a cold orphanage. Don’t kid yourself into thinking that wouldn’t have happened or that it doesn’t happen EVERY.SINGLE.DAY! My heart breaks for all the little ones that I can’t bring home and it makes me celebrate every moment I have with the ones that I could bring home.
This has been am amazing journey. Her health has improved so much this year.
She has grown and blossomed right before our eyes.
There isn’t a day that goes by that I don’t thank God that I was allowed the blessing to be called Evie’s mama. It’s an honor and a privilege to be the one who gets to care for her, comfort her, love her and be loved by her. I don’t take a moment of it lightly.
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Thankful for…
A little boy that did better than anyone expected. (Today he has walked down the halls, had his chest tubes and i.v.’s taken out, and even smiled. UNBELIEVABLE!)
A little girl that we were told was deaf but can hear enough to dance to the music.
A little girl who now understands love and has learned how to give kisses.
A little boy that has blossomed and grown.
Exciting proposals and new additions to the family.
Family that becomes best friends.
People coming together to help others.
Shaved little heads that now hold enough hair for big sister to do a silly hairdo.
Siblings that get opportunities to make great memories together. (Hope loves special effects make-up. Cassie took her to be a zombie extra in a local movie.)
Big siblings that love their siblings enough to take care of them when mommy and daddy have to be gone with someone who is sick.
Husbands who support you, dream with you, love you, and make you laugh for more than 29 years.
Friends, family and others who encourage, support and pray for you.
Meeting people who have majorly changed your lives. (Maria’s Big House of Hope, New Hope Foundation and the Chapman’s daughters words that made me rethink being too old to adopt.)
Thankful, blessed, grateful, overwhelmed, and humbled – all these and more.
HAPPY THANKSGIVING everyone!
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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.
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Blessings
Evie is extubated and resting now. It was a very long morning and afternoon where she was uncomfortable and they couldn’t control her pain. This is the first time she has rested comfortably all day long. Counting our blessings one medicine and one tube removed at a time.
Dan and I were just talking about how at this time last night (7pm), they were rushing her down for an emergency heart cath with ECMO on standby and tonight she is happy and resting and on her way to healing. Can’t get much more blessed than that.
Yesterday I wrote about some pictures that a friend of Cassie’s took. She came over with her camera and just played with the kids in the backyard. I picked 20 of my favorites to show you. Some good news is always in order. I have been blessed 12 times over….
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What a day!
Our day started bright and early at 5:15. We did the usual pre-op stuff. During pre-op she dropped her oxygen saturations into the 20’s and it took her quite awhile to bring her sats back up. Scary for all of us. As I said before, we knew for certain that we had to get this surgery done. Dan said he wouldn’t be comfortable taking her home knowing she could have a pulmonary hypertensive incident at home and if she did that, there was a very big possibility that she would die. At that point, if it was scaring my husband, I knew it was bad. He is usually Mr. Calm in these situations.
She flew through surgery. They completed it without putting her on bypass. She had minimal bleeding. She came back extubated. Everyone was so excited about her O2 sats. 84…..I tell you……84. Her little fingers even looked pink. We were all celebrating. Her surgeon felt everything went remarkably well and we waited for her to come back up to the PICU.
She had a hard time with pain control. They just couldn’t get her pain completely under control. There isn’t much worse in this world than listening to your little one cry out “Mama, ow!” and not being able to do something.
We were just sitting there and her nurse changed her O2 sensor to the other toe and all of a sudden it read 44. It was just that fast. They tried to echo her and couldn’t see blood flow through her shunt. I knew then it meant cath lab time. It wasn’t until they called for ECMO on backup that I truly cried. Many of you might not even know what ECMO is but If you are a heart mom, you know exactly what I was feeling. ECMO is not a word you want to hear.
The complicated part for Evie is that her crit is so high. They have been doing exchange transfusions trying to get it down. It is a hard balance to find. Her body has worked so long at trying to move oxygen. The only way to do this was too produce more red cells but more red cells equal thicker blood and thicker blood equals clots. This whole surgery has put her little body in shock, just like the cath did. The other issue she is having is her body has gone crazy producing platelets. She was 80 when we came in, which is low, and we have steadily climbed into the higher 200’s over the course of the day. Add to that the fact that you need heparin to stop clots but not too much because you are still bleeding from the surgery and it becomes a very delicate walk on a tight rope.
They ballooned her shunt and removed the clot in the cath lab. Her sats instantly came back up to the low 80’s. Her shunt was still in great shape which meant no stent. She will spend the next 24-48 hours completely snowed and on the vent. We will then see what happens. We can’t have this happening all the time. They have the issue of collaterals too. These collaterals, along with her PDA that never closed, are what have allowed her to survive this long. But now the collaterals are competing with her shunt. They have been debating back and forth about when to put coils in some of the larger collateral vessels to block them. If they coil them now and she clots her shunt, they will in effect take away her safety net. If she has no collaterals and clots her shunt, she has NO blood flow to her lungs and she will die.
Although overwhelmed and sad that there were complications, Dan and I are continuing to count our blessings. First, it happened while all the doctors were still here and not in the middle of the night. Second, that we didn’t just proceed with the Glenn. We have been told by numerous people she wouldn’t have survived it. Third, we didn’t proceed last Wednesday. This is what we were afraid of, complications without a surgeon around. We were thankful we didn’t need him last night though it was comforting to know he was here just in case.
In the midst of all the chaos, we received pictures that sweet Rachel had taken of our babies. We sat in the cath lab waiting room, looking at all our blessings. I will try and post some of those pictures later. In times of trials, it’s always good to keep your eyes on all that you have been blessed with.
The outpouring of love and support has been overwhelming. Thank you for covering sweet Evie in prayer. When I could do nothing else, I looked at Facebook and read about everyone who was covering her in prayer. I can’t thank you enough.
Here is what her fingers looked like before and after. Pink is our new favorite color!
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This is the day…
…..that the Lord has made. I will rejoice and be glad in it!
I will rejoice even though my heart hurts that she has to go through this pain. I will rejoice that there is hope. I will praise God for the surgeons and the rest of the team that hold my little girl’s life in their hands. I will keep my eyes on the Lord because the truth is if I don’t I will fall apart.
She doesn’t even weigh 20 pounds and they are going to open up her tiny little chest. I know that this is the right time. We got her as healthy as we could. Her oxygen saturations are now in the 20’s when she is upset. For those of you without a medical background, healthy O2 sats are over 95%. I once had someone look at me during a cath, when my child’s O2 sat was 53% and say that they had never seen sats that low on an alive person. Not a great comment for a mama. Sats of 20 turn you the nastiest shade of gray/blue you have ever seen.
I’m taking this as a blessing too.
It’s so easy to second guess yourself, but if being mad drops her sats that much, she needs surgery now. No more second guessing. This is the right thing. I just don’t want her to have to go through it. It’s easy to be tough until you are faced with the reality of handing her off. It’s easy to pretend its a long ways away and you have plenty of time. But placing her in someone else’s arms? Absolutely heartbreaking and gut wrenchingly awful.
I love this picture for many reasons. The first being…..well, seriously just look at that face and her cute little ruffle tutu. Second, she finally has enough hair to almost have a “do”! Third, she is so brave, strong, and resilient. This was taken just a short while after being so mad at her blood draw that we played for a while in 30’s and 40’s with her O2 sats. She even broke some blood vessels in her eye. Yes, she was just that mad. All in all, not a fun morning but she loves big and forgives easily. A carpet picnic with her mama and daddy and her favorite fries and all is right with the world.
I love this girl so much. It feels like she has been in our house forever. I am a blessed mama for every single day I’ve been allowed to love her.
The surgery is expected to take over 6 hours. I will update when we are done. Thank you so much for the prayers and encouragement. It is amazing to me that people in China, Europe, Africa and the US are praying for her. I can’t even adequately express how that feels. Thank you! Thank you! Thank you!!!!!!
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Surgery date 8/20
Daddy making Evie smile.
I feel like the little boy who called wolf. I have said she was having surgery on so many days that I can’t even remember which dates were said now. But is official, Evie will NOT be having surgery tomorrow. There were many factors that came into play with us waiting until next Tuesday. These decisions are so hard. When you have a heart baby, especially one from China with a defect that hasn’t been corrected, it is very, very complicated to say the least. There aren’t a lot of these children around. There are no studies on the best way to do things. There are no big studies showing what your babies outcome will be.
Take for instance, Benjamin, had he been born in the U.S., he would have had surgery in the first few weeks of life and if all had gone according to plan, he would have gone on to live a normal lifespan. Instead, he has to undergo a very risky surgery with a success rate that is unknown.
There was a new article out on CNN where they investigated a hospital after some babies deaths. If you know of a family that is having a baby with a congenital heart defect, please pass on this information. Your babies best chance of survival is going to a facility that has a large volume of children that they care for with the same defect along with a great survival rate.
With regard to Evie, we had two options.
Option one was to do surgery tomorrow knowing our doctor was going to be out of town the very next day until Monday. This is not something we wanted to risk. If there were any complications from her surgery, he wouldn’t be here to fix the problem.
Option two was to wait until next Tuesday when the surgeon returns. This option brings along with it the worry that we really don’t know what brought on her episode last Friday. We think it was due to the high crit and was added to by the extra fluid from the cath along with the contrast, and her little body just couldn’t handle the change. These China heart babies are very, very sick and in Evie’s case her body has figured out how to survive with very little oxygen to her lungs.
I’m not sure I am happy with either option. I don’t want to wait for fear something will happen, but I don’t want to have surgery for fear there will be complications. So I guess, surgery will proceed next Tuesday.
Evie will be having a central shunt placed. There has been some talk about moving straight to the Glenn procedure, but it has been proven over and over again, with these heart babies that haven’t been corrected, that you need to take it slow, give them time to grow, and then proceed. Our surgeon was trained at CHOP and is very skilled in doing the shunt. We know she will be in good hands.
She had a pretty good day today and spent most of the day recuperating. She isn’t really drinking and is still not back to herself, but we are hoping by tomorrow we can go to the general floor.
Evie showing us what her cath showed.
Thank you so much for your concern and your prayers for Evie. Please include Zach and Cassie along with Mema who are trying to hold down the fort and for our other little ones who just don’t understand what is going on. I’m thankful that we have older children who are so willing to care for the younger ones. Zach and Cassie are there to comfort them and to keep it as normal as possible at home. We have always had this debate. Should both Dan and I be at the hospital? I want to be here to mommy my babies and Dan needs to be here because he has the medical background and I could write a book on how many times he has saved our babies from some mistake or some procedure that didn’t need to be done. Zach and Cassie make this possible and I am so thankful and blessed that they would choose to do this.
Mommy getting to old Evie after she was extubated.
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Evie update 8/10
Evie had her cath on the 6th. It was pretty uneventful. They weren’t able to place the stent because it was deemed too risky. We went home that same day. She was a little puffy but seemed to be doing ok. Thursday was a pretty good day, but by Thursday night she was looking bluer and was fussy. By Friday morning Dan and I were both concerned – she wasn’t eating, she was fussy, and she just didn’t look right. We headed back to Iowa City with the fear she might have clotted off her PDA. We learned from her cath that she had minimal blood flow to her lungs. She has a very small opening in her PDA and a couple collaterals. Those are the only things providing blood flow to her lungs. They explained the opening to me as “it should be the size of a large straw and it is a pinpoint opening” – so not optimal to say the least. Since her hematocrit is so high (which makes her blood thicker), she is at a risk for clotting her PDA off, which would be fatal. Pretty scary facts to learn.
Many people have questioned why she isn’t on blood thinners. Children like Evie need their crit to be higher so they can oxygenate better, but a crit that is too high can cause problems with clotting. It’s a vicious cycle of trying to stay on top of things. You can’t have it too high (polycythemia) or too low (anemia). Blood thinners just won’t work. To treat, they remove a certain amount of blood (a partial exchange transfusion) until they get to the appropriate level for the hematocrit.
When we got to the clinic her initial O2 saturations was 33%. We leveled off in the 50-60’s. Her cardiologist took her straight for an echo, they could see a little flow through her PDA so we we headed up to the PICU to admit her and figure out what was going on. While they were trying to place an i.v., she crashed. It was pretty scary. They called it an acute pulmonary hypertensive event, partially due to polycythemia. Or in mama terms, one minute I’m trying to comfort my daughter who is thrashing around because she doesn’t want to get poked and in the next moment, her lips turn a horrible shade of blue and she just goes limp and people start running in the room from all over to place lines and intubate.
Today has been a mostly uneventful day. She is still intubated and on the ventilator. They have kept her sedated and giving her a paralytic to keep her calm. Earlier this afternoon though they took her off the paralytic drug and since then we have been having trouble keeping her sedated. She keeps waking up and thrashing around which is not a very good thing while being intubated.
They are running tests to make sure she doesn’t have an infection. As long as she doesn’t have an infection, the plan is to do surgery on Wednesday . During this surgery, they will try to place a central shunt. This will allow much more blood flow through her pulmonary arteries. The plan is to place the shunt and let her grow for a few months and then try to do the Glenn. Hopefully, with the increased blood flow her pulmonary arteries will grow. When she initially had her echo they told us that she had almost non-existent pulmonary arteries, which meant there was nothing they could do for her. The cath, however, showed that she does have pulmonary arteries that could possibly grow over time, with increased blood flow. Dan said, “He almost did a happy dance right there.” Yes, the news was just that good. It meant there was real hope.
We are all cautiously optimistic.
Today Zach brought us clothes and our laptop. We had lunch with him before he left and Shawn Mullins song “Lullabye” came on the radio. Now this may not mean much to you but it brought back another wonderful, comforting memory for me. Years ago when Hope was going through one of her surgeries, Zach, Cassie and I were sitting in my friend Kathy’s driveway. I was talking to the kids about how hard all of this was. I told them I was pretty sure I could go through pretty much anything as long as I knew in the end that everything was going to be all right with Hope. We prayed, I started the car and the radio played, “Everything is going to be all right. Rockabye!” You can call it what you want, but that was one of the biggest Godcidences in my life. So for that song to come on today, a song that originally came out in 1998, being played on the radio, was just another comforting moment from God. One more reminder that He is in control. He has a plan. His plan is perfect. His will will be done. I understand completely that “everything is going to be all right” does not necessarily mean all things will work out perfectly for what I wish for Evie. But either way Evie will get better. She will be pinker with surgery or she will be healed completely on the other side. I know which one I choose, but I am a selfish mama who wants just a few more days of listening to her chant “mama, mama, mama’.
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Updates on Evie
Hey everyone, this is Zach. I just wanted to pass along a quick update on Evie’s cardiac cath today. The good news is that her pulmonary arteries are much larger that we initially thought. However, the bad news is that the doctors deemed placing a stent in her PDA to be too risky. While opening the PDA up with the stent would improve blood flow, there’s a high risk that they could create a tear in the PDA, which would be fatal. Evie’s heart is in a dangerous state right now, because almost all of the blood flows though one narrow channel. If that channel were to clot, there’s nowhere else for the blood to pass through. Because of this, the surgeons are now considering an open-heart procedure to place a BT shunt that will help redirect blood flow.
Evie is currently recovering from the cath, and should be released from the hospital later this afternoon. The plan beyond that is to schedule the surgery for as soon as we can.
Thank you, everyone, for your continued prayers. As her big brother, it truly is comforting to know that she is on the hearts and minds of so many.
-Zach
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