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Questions and answers
While we were in the hospital, I was asked quite a few different questions about our family. It got me to thinking about all the questions people ask me when we are out and about and the statements that are said while we discuss our family and adoption . This got me to thinking that maybe some of my readers might have the same questions so I thought I’d try my best to answer them.
You aren’t actually considering adopting more are you?
Well, we haven’t ruled it out completely, I am assuming we are done. Our house is pretty busy with all the special needs and surgeries going on, but I believe fully that God has led us to all of our children. He has blessed our family over and over again by following His lead and it would be insane for me to say “No” to him now. Besides whenever I say things that are absolute it usually turns out the other way. I will leave it in His hands and keep my focus on the children we are caring for right now and pray that if there is another child(ren) in this world that are meant to be with us that He makes it abundantly clear as quickly as possible so they are not alone for any longer than is necessary.
Let’s see how you feel about having so many children the same age when they are teenagers.
Truth be told, bring it on. I pray that I get the chance to parent five teenagers at the same time. Eli, Ben, and Evie all have very complex heart defects and their life span will be shortened. No one can tell us for sure how long they have. They may have many years or at any time they may have a weird rhythm issue or plug a shunt and then their lives will end. Every time we go in for a cath or a surgery, we live with the fact that they may not come back out from surgery. We have to ask ourselves questions like “Is it worth it to take the slim chance of survival from surgery or do we just enjoy the time he/she has left?” These are not easy questions to answer. I pray to God that I am allowed the wonderful opportunity to parent five teenagers that have three and 1/2 years separating them.
Are you insane? Are you crazy? Have you lost your mind?
No, I am not crazy, insane or any of the other phrases that you might ask. I am, however, obedient to God’s calling. The first time it was hard to turn it all over to Him, but when you see the blessings that have been bestowed on you for following….well, each time gets just a little bit easier until you know it would be insane not to follow His lead.
What about your other kids at home? Do they feel neglected? Do they resent sharing their time?
No, if anyone should have had a problem with us adopting more children, it would be Gracie. She was the baby at the time. But Gracie loves her siblings and brings me new pictures of children available for adoption almost every single day. She has mentioned wishing she could hypnotize Dan and I so we would forget how many children we have and adopt again. Jasmine informed me the other day that “I could love more”. When asking her what she meant by this, she informed me that I could love more sisters. When I asked her how many more, she informed me that I could love two more mei mei (little sisters) and two more jie jie (older sisters). She told me that she would share her room and they could fit bunk beds in there.
You must have lots of help.
I don’t have paid help, but I do have help with my older children who live at home in an apartment, in our garage, on our acreage. When we moved here 11 years ago, we wondered what we would do with a 9 car garage. We chose to turn the back 6 into an apartment for the kids as they go to college. Cassie is a junior at Iowa State University and she has arranged her schedule to be here every morning while we get everyone up and ready. Zach, a software engineer who works from home, helps out whenever I need a sitter. Dan works from home during the week and Dan’s mom comes down whenever I ask.
Who takes care of the house and the other children while Dan and you are in the hospital with your sick child?
We have gone back and forth on the right way to do this each and every time we are in the hospital. If you know Codey’s story, you know we have spent years in the hospital. We were lucky when Codey was in the hospital because we lived in Iowa City at the time. It makes it harder when you have to travel. Each time our family gets bigger, it gets more complicated. In the end, we have decided both Dan and I need to be in the hospital. Dan because of his medical expertise and me, well, because I’m mommy of course. It would be nice if we could go to a hospital in our home town, but that isn’t an option. Zach, Cassie and Mema (Dan’s mom), take care of things on the homefront. This usually works great for short stays. It is like a mini vacation full of fun when they get to spend their days with their older siblings. Every family has to figure out what works best for them and so far, this works for us.
How many children do you have at home? How many children do you have all together?
We have twelve children. Eleven still living. Kyle passed away at five days of age, twenty-six years ago. All eleven children live at home. Zach and Cassie are roommates in the apartment and the other nine live in our home. Our oldest son, Codey, is severely mentally and physically challenged and continues to reside in our home.
How do you cart everyone around?
We have a bus. Yes, a bus! The children love it. I love it too except for the six miles per gallon that it gets. It has a wheelchair lift and room for sixteen passengers, two wheelchairs, and the driver. This is another reason why the girls think we should be able to adopt more. Apparently, if there is room in the bus, there is room to adopt.
Is your house huge?
It is a nice size ranch house. It has three bedrooms upstairs and three downstairs. We remodeled to a more open concept a couple years after moving in and it has worked out wonderfully for Jasmine’s wheelchair. We have a big sunroom that we have converted into a playroom for the kids. It is big and sunny and they have lots of room to play.
How do you pay for all of this? Isn’t adoption expensive?
Yes, it does add up but it doesn’t cost much more than a car these days. You can find a way to pay for things if you truly want. It takes a good year to complete the adoption and your agency will set out exactly at each step when the fees need to be paid.
We wiped out our savings. We adopted more than one at a time so the travel costs would be less. Only paying for one trip at a time and getting two children or four children helped. When you say $20,000 or more for an adoption, it instantly turns people off. But you have to remember that part of that is agency fees, part of that is orphanage fees, part of it is government/paper fees, and then there is the travel costs and it is all spread out over the time that you are adopting. I know many people hear that amount and think they can’t do it. I say money should never be a factor in your choosing not to adopt. There are many, many ways to do it. There are grants. You can adopt through the foster care system. People will step forward. I believe you would be amazed by the amount of people who want to help. Plus, I believe fully that if you belong to a church and feel called to adopt, your church family should be helping. James 1:27 clearly states the churches role in adoption.
I know people think that we have it easy because my husband makes a good living, but if you think we just had enough money and it didn’t cause us any hardship you’d be wrong. Plus, the Lord has always provided. When they agreed to expedite Elijah’s adoption, we were out of money. We were contemplating borrowing against our 401K when we got the most unexpected gift. We had known years before that there was a disagreement between the University and the government about taxes that were withheld. This happened when Dan was a resident back from 1995-1999. We figured nothing would ever come of it, but a few days after receiving notice about Eli and trying to figure it all out, I sat in my car and opened an envelope from the University paying for those back taxes AND interest. It was because of that interest that we were able to pay for Elijah’s fees and take Cassie along to help. God is good. Don’t lose sight of that fact. He can surprise you in the most amazing of ways.
Well, I would love to adopt, but….
“We don’t have enough money.” I know as well as you know that you could save. Most everyone has areas that we could cut back on. I know that doesn’t mean everyone, but most of us can and could cut back. We find the money for cars and a vacations and nicer houses filled with stuff we will never use or don’t really need. DON’T let money hold you back.
Besides that, did you decide to have biological children? When the news states facts like it costs $200,000+ to raise a child nowadays did you say, “We just can’t afford that” or did you assume you would find a way as the years went by and that God would provide for all your needs?
“We don’t have enough room.” Seriously? This has to be the most ridiculous statement. We are talking about children who live in an orphanage. Some of these orphanages are big, sterile, buildings and some have no windows or doors. These children share rooms with many, many cribs or beds. They have no toys of their own. In most cases, they don’t even own a toothbrush. Believe me when I say, “You have enough room and can provide for all of their needs.”
“I don’t want my other kids to do without.” (Usually this means extracurricular activities.) What makes you so sure that your other children will have to do without?
So if you have ever said any of the above sentences or anything similar to it, I want to take this moment to say, “STOP!”. Please don’t say this to a parent who has adopted, especially if they have been to a third world country and seen the need. These excuses make no sense. I’m going to say this knowing full well that I may tick some of you off, but I am assuming if you were saying something that offended or didn’t make sense, you’d want to know it.
When you say these things you are in fact saying __________ is more important than a child with no family, living his/her days in an orphanage, with no future or hope. You can’t honestly think that your child playing a sport is more important. You can’t honestly believe that your child having a room to themselves is more important. If you have been thinking about adopting and have said any excuse to yourself, then really let this sink in. Let it seep into the deepest recesses of your heart and mind. What is truly important? Do these excuses still hold up? And if this doesn’t work, pretend Christ is standing right there in front of you (because someday He will be), try out that excuse now. “Lord, I would have loved to save one of the least of these, but Junior would have had to share a room and it just didn’t seem fair.” How does that excuse feel now? How about all the things your children will learn. How about all the ways your heart and your home will be opened to love and caring and Christ-like behavior? What about all the blessings that you can not even fathom?
What has been the hardest part?
The waiting is hard. Once you see their picture, you want to go get them. Every day you wait, knowing where they are, is painful.
Unknown diagnosis are hard. Believe me I am not looking forward to explaining to Jasmine what she really has.
Lainey not sleeping has been very hard. She is up every two to three hours and our family has had to take turns caring for her at night.
But truth be told the hardest part, for me, is that I can’t do more. We are sponsoring children. We are helping others who are adopting but it still doesn’t feel like enough.
Every day in China girls age out of the system at the tender age of 14, and are released with no resources. Many times they don’t have an education or anyone to turn to. The sex traffickers know this and many girls are lost. Every day children die in orphanages – alone! Every day children are hungry and hurting and wanting a mother and a father to love them. Only a small percentage of the orphans in the world will ever be adopted. A heartbreaking fact when you consider just how many Christians there are. If we, as Christians, stood up and either adopted or helped others, there would be no orphans. What a beautiful statement of the love of Christ.
Why aren’t we doing more? Why do we choose to close our eyes to what is going on around the world? Why do we continue to make excuses?
“The problem seemed so vast, so endemic, that stopping to help a single panhandler (person) could seem pointless.” – Laura Schroff.
If we all stopped and helped just one, we could help them all.
“And so we swept past them everyday, great waves of us going on with our lives and accepting there was nothing we could really do.” – Laura Schroff
What are you doing with your life? Are you caught up in the busyness of your life? So much so that you can’t stop to help one?
“What we see depends mainly on what we look for.” – John Lubbock
Are you looking? Do you see the hurting people? Do you see the children in need? Stop and look for that one that you can help!
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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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Updates
So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand. Isaiah 41:10 NIV
I’ve been hanging on tight to the “do not fear” portion of this verse for the last couple of weeks.
I will apologize ahead of time that this post is long. I’ve chosen to post updates on everyone in one blog. The good news is each paragraph is a story in itself so you can stop and come back and it won’t even matter. Plus, if you leave and come back it adds another visit to my blog and I am really close to going over the 20,000 visit mark for the year. Isn’t that unbelievable? I sometimes forget that there are those, that I don’t even know personally, following our story. I update for my family and friends who I know are praying for our family and for each of my children and pray that maybe, just maybe, I will reach someone I don’t know and they will be encouraged to do more. They will be encouraged to follow where God leads them, even if they are afraid. It just seems amazing to me that our story touches others. To me, it is just our life. It’s just my normal. It can be really, really loud, and really, really busy, but at the end of the day we are just a family.
If you are one of my readers, which I guess you’d be if you are reading this, thank you. Truly thank you. Thank you for caring about my children. Thank you for covering our family in prayer. As Christians we are commanded to encourage each other and lift up each other. You do that for me with your comments. You do that every time I hear about someone praying for my children. What a blessing. It goes without saying that the title of my blog says it all….I am SERIOUSLY blessed! Thank you!
Benjamin
Poor Benjamin had been feeling so bad. He was admitted to the hospital to receive IVIG because his platelets dropped to 12,000. He had a severe reaction to the IVIG, his temp jumped to 105.1 and his heart rate was well over 190. When your heart is as overworked as Benjamin’s is already, a very high heart rate for an extended period of time is not a good thing. During his hospital stay, I asked him, “Benjamin, do you know that God loves you?” and he responded, “Yes!” and then I said, “Benjamin, do you trust me?” and he said, “Yes mama!” as he snuggled in closer he said, “I’ll be brave.” He really is the bravest kid. I wish I had the words to properly convey how humbling and overwhelming it is to watch your child truly trust God. When said child is only 4, it is just mind blowing. Benjamin is sweet and gentle and so loving. Benjamin can not hear sirens without requesting that everyone pray, well commanding it is more like it. When you pray, you have to pray for the person who is hurting, for their family, for the people driving, and for their safety. You can’t leave anyone out.
We had been home for a couple days and Ben was still whiny and not eating. His dentist decided it was time to take out two molars before he has surgery. One of them was infected and yet Ben wouldn’t really complain. Benjamin’s surgery is scheduled for August 13th at Mayo. We have to check in early the morning of the 11th to check his platelets and see what needs to be done to get him ready for surgery. I am nervous about this surgery, but we know it is his only hope of being pinker and extending his life. We are trusting in God’s plan and His timing. We are putting Benjamin in His hands and praying for the best. Plus, Benjamin has decided that he is SuperBen Ben and he can handle anything!
Plus, Gracie has informed me that “it’s a pretty good day for a miracle”. So we are going to go with that. It does seem like a pretty good day for a miracle! 🙂
Cassandra
She has been such a huge help this summer. She was invaluable in China and continues to be so. She allows her mama some sleep, some much needed sleep. I am always amazed at how much she has learned from our life. She is so far ahead in her walk with Christ than I was at her age. Here is her latest post that shows exactly what I’m talking about. Things I Have Learned
Codey
The boy turned 25. How is that even possible? I’m barely over 25. Although, I suppose that makes the fact that I just had my 30th high school reunion a little improbable too. 🙂 Codey has adjusted well to all his siblings. He doesn’t seem to mind the increased decibels in the house. It has gone remarkably well. Better than I could have even hoped for. He has been healthy and he is a pretty happy guy.
Elijah
We now know why it said that he was “charming and handsome” throughout his papers from the orphanage. This boy will charm the socks off you. He is sweet and the faces he makes just crack me up. Last night we hit a wonderful milestone and he melted my heart a little more. There are many habits that children come with, who are raised in an institution, one of them is not wanting to be held or rocked. Some, not all, children have this. They are so used to being alone. Comforting themselves. Not crying out when they are in pain because no one responds. It’s just very, very sad. Last night Eli had a nightmare and he let me rock him. He let me hold him and comfort him and he said, “Mama, wuv you.” Those moments are to be treasured. Those moments of complete trust and the understanding that you are there for them. Little tiny steps but every time they happen they just warm your heart.
Evangeline
This little girl just continues to improve every single day. She has gained about a pound a week and weighs in at 20 pounds now. She is sitting, crawling all over, pulling herself up to standing. She is singing and saying new words every day. Little Evie’s heart catherization is scheduled for August 6th at the U of I Hospitals. I am soooooo not ready for this, but she is getting bluer and bluer. It needs to be done. I love, love, LOVE this little girl so much! She has a personality that is just so big! She steals people’s hearts in a matter of minutes when they meet her. They are hoping to place a stent in her PDA and increase the blood flow to her very small pulmonary arteries. Their hope is with increased blood flow, maybe her arteries will grow. I’ve had others write to me, to encourage us, with stories telling how this has worked for their children. Praying that there is hope for our little Evie Faith. Her middle name says it all – we have proceeded in faith and continue to press on in faith.
Faith makes things possible NOT easy. Have you heard that saying before? That’s where I am right now. It’s easy to love her. It’s easy to have your heart completely stolen by her. It’s easy to thank God for the gift of being her mama. It’s hard to know that I may not ever get to have a birthday cake with her. How silly is that? But not being able to celebrate a milestone with her makes me cry. It really is the little things in life that matter. It’s hard to think about taking this chance, even though the percentage is low that she won’t make it through the cath, the truth is she might not. Am I strong enough to take this chance? How strong is my faith? Can I truly just turn it over? Fear Not! Fear NOT! FEAR NOT! Eyes directly on the Lord and counting each and every blessed day I get to spend with her.
Gracie
She just got a great report from the hospital at her check-up. She got to drop another medication. She grew taller, which is a big deal for a child who isn’t growing from being on steroids. She’s been doing really, really well. She has also informed me that when she grows up she is adopting 20 kids. That is just my Gracie’s heart. She loves more and wants to do more. She just loves her siblings. In the picture below she made an early morning picnic for them. She’s always the one making the forts, playing games, giving baths (with help), having dance parties, etc.
If you are wondering why Benjamin is in a penguin costume, well, the night before the girls had a fancy dance party complete with big, frilly dresses. Benjamin thought he should wear a tuxedo and this was as close as he could find. He then wanted to sleep in it, which I allowed. There’s just something about not knowing how many days you have that make the little things seem like not such a big deal. Who cares if he sleeps in a penguin costume?
Hope
Hope is Epic! Her words not mine. I was asking her what she wanted me to tell others about her and she jokingly said, “Say I’m epic!” and then rolled on the floor laughing. So, of course, I have to include those words. That is just the kind of mom I am. Supportive! Actually, Hopey is truly epic and is doing really well. Health wise you’d never have any clue she is missing half her heart. She recently just had a nasty bout of strep, but other than that she has been remarkably well.
Jasmine
Oh my goodness, this girl has been busy. She went to another VBS at a friend’s church. It was wonderful because they used the same VBS theme that our church did so she already knew all the songs and could sing along. She is learning more about God every day. We tell her the basics. God made everything. God loves you. God loves me. We love God. God brought us to her. Today a friend of the family who speaks fluent Mandarin asked her about God and told her a few more things.
The reward for attending every night of VBS was a ticket to the local amusement part, Adventureland. Tonight she went with Grace, Hope, Cassie, Zach and Stephanie. She loved it. She had a corn dog and a sno-cone. She tried the teacups, the ferris wheel, and a pretty tame roller coaster. She played tons and tons of games with Zach and won two small stuffed toys. She had an old time picture taken in the photo shop.
She has come so far. We are still waiting for her neuro appointment and her 2 1/2 hour MRI, which is scheduled for next week. She had an eye exam this week and it broke my heart. So many things that orphans feel and are fearful of that we can’t even imagine. Take for instance the eye exam. They started showing her letters and all was going well until the letter “H” came up on the screen. She didn’t know “H” so they handed her a board with four letters on it and asked her to point to the one she saw. It was then that the tears started. Not just a tear but full-out-sobbing tears. It broke my heart. She heard the word “test”, couldn’t say the letters, and just lost it. When I asked her about it on Google Translate all she would say was that she was “afraid”. She wouldn’t/couldn’t tell me why. It just made me sad. Something as simple as not knowing a letter should not fill you with such fear.
Today I asked her if she was happy here and her little face just lit up and she said, “Oh yes, Mama!” Those three little words just made my day.
Lainey
She is still not sleeping which makes for some really, really, really long nights. We have started taking shifts. Every once in a while, Hopey takes the 10 p.m. to 12 p.m. shift for me, because she likes to play video games and she isn’t able to have alone time during the day. It’s a win-win situation. Zach hasn’t been able to take many because of the final push on his video game, but sometimes takes the 1 to 3 shift. Cassie has been taking the 1 a.m. to 7 a.m. shift with Dan taking over at 4 a.m. when he is able to. Cassie is sleeping on and off during those hours, getting bottles left and right, holding a child who doesn’t want to be consoled, and all in all, being a life saver. I get up around 6:30 a.m. and take over with the crew, since no one, but the older kids, like to sleep past 7. Cassie then goes back to bed until noon. We have to find a solution before the end of August because Cassie will be going back to school. We have recently been approved to try melatonin. There was some debate on whether you could use it with a child with PKU, but we’ve been given the okay. Hopefully, this will help our child, who doesn’t want to sleep. sleep.
On top of that we found out that Lainey is extremely farsighted. We have been noticing that she grabs at things funny, like she just can’t see it clearly. She takes both hands and kind of starts big and brings them in closer. She seems to have an issue with depth perception and she is clumsy. It’s nice that at least there is a reason for this. We ordered her a pair of glasses. They are like goggles, completely unbreakable. This child might make that statement untrue.
Here she is rocking her compression shirt. It has really helped her. When you put the shirt on, she instantly becomes calm. It is the strangest thing.
But all in all, if you saw the Lainey we saw on day 1 and compared her to the Lainey you see before you now, things are so much better. Truly better. She is happy. She hugs. She plays with the kids. She laughs out loud. It does a mama’s heart good to know that she knows she is loved.
Maisey
Well, little Maisey Mei got herself some glasses. Fitting glasses on a little Asian nose and not really having ears is a challenge. These are what we found. Cute, little, pink wire-rimmed glasses. We use her hearing aid headband to hold them up and it seems to be working pretty well. Her speech has just taken off. She is getting clearer and clearer in the way she says her words. She is a great big sister to the littles.
Mom
Mom is back in her own home and feeling better. She just had her check-up today. She is still really weak but is steadily getting better. Her ejection fraction went from 20% to 35% – so that was wonderful! We were also told that she would need her carotid surgery done first to allow for proper blood flow to her brain when she is put on bypass. They said surgery is likely three months after pulmonary emboli are discovered. That would mean surgery could possibly be in 2 months with her quadruple bypass following 4-6 weeks later.
I am posting pictures of all the kids so I thought I’d include the picture my sister-in-law recently took of my mom. She is rocking those Minnie Mouse shades! Mom won’t care. Really she won’t. Have I mentioned that my mom doesn’t own a computer or know how to get on the web to even read my blog?
(No worries. I did tell her and she gave me permission.)
Zachary
He is busy with his new game that is set to be released at the end of the month. I say “his” but the truth is, he is the lead programmer for an international company trying to put their first game out. It’s pretty exciting watching how God has let him use his degree from home, which pretty much everyone said wasn’t possible. Oh and have I mentioned that he has a girlfriend? She is very sweet and all of Zachary’s siblings really, really like her. I won’t out them and put up a picture….yet. For now, do you hear that Stephanie? 🙂
Everyone
Everyone gets along so much better than I could have even hoped for. Maisey helps Lainey in so many ways. Maisey seems to have an affinity for helping those who aren’t able to communicate. She just gets right in their face and directs them. She makes Lainey hug and hold hands and play. It is a blessing to watch them play.
Right now the littles are riding their cozy coupes in circles around the couch.
Life is hectic, busier than I could even ever imagined but it is full of love and laughter. I couldn’t imagine my life without even one of my blessings.
Praying life is treating you well friends. Enjoy your family, your friends, your faith and follow God’s lead without fear!
-
Some days
Some days I can pretend everything is all right
and some days I can’t.
There are lots of factors that contribute to some days being harder than others.
Lack of sleep.
That certain time of the month.
Hearing about other children who have lost their battles.
Reading a mama’s blog where she talks about this battle.
Being added to a new Facebook group of mama’s who have lost children.
Feeling like maybe I’m not as strong as I thought I was.
This little face looks up at me….
and my heart breaks.
It breaks because it took so damn long to get her here.
Time wasted while paperwork was filed and mailed and authenticated.
An abandoned baby, left alone.
In a place no baby should be left.
Time was wasted when I could have held her.
Time was wasted when I could have loved her more.
Time was wasted that I can never, ever get back.
This little girl who is so very sick.
Who wants me to hold her all day long.
She laughs and smiles with that huge smile.
And I try not to think about her being alone.
But it is hard…
I mean how can you not think about those nights she cried alone,
and no one wiped her tears.
Those times she was scared,
and no one came.
Those times when she was sick,
and no one rocked her through the night.
Sometimes I can pretend everything is all right,
but when I hold her little hands, I know the truth….
She is very, very sick.
She is wonderful,
and bright,
and funny,
and so unbelievable sweet,
she smiles all the time,
and she can barely talk,
but she looks up at me with those big brown eyes
and says, “Mama!”
“Wuv you.”
It’s only been two months.
Two short months since she was placed in my arms.
But I’ve loved her for longer, since I first saw her face.
Forever it seems.
She says those words and my heart overflows with love for her.
As we sat in church today,
I prayed and thanked God for her again.
As she tapped me on the chest and said “Mama!”
Over and over again she said, “Mama!”
I know I should have told her to stop,
but she has had so many days when she couldn’t say mama
because she didn’t have a mama
and there will be so many days
when I will no longer be able to hear the word mama come from her sweet little lips.
So I let her say it
over and over and over again
as she shook her little head “yes”.
I am so happy that I get to be her mama.
What a blessing.
What a joy.
What an honor beyond any honor.
I want to shout it from the rooftop.
“I am Evie’s mama!!!!!”
I am proud to say that.
She is a treasure.
Worth every tear that will fall.
It hurts my heart sometimes, but….
truth-be-told I wouldn’t trade it for anything.
I want to be strong for her.
I want to be here for her.
I want to live in the moment for her.
But it hurts
and I know it’s going to hurt even more
someday.
Some days I can pretend that everything is ok,
but today is just not one of those days…..
-
Hi! My name is Jasmine!
Jasmine went to Vacation Bible School (VBS) this week and had a wonderful time. I worried about her going because she doesn’t know a ton of conversational English yet, but Jasmine loves music and VBS has a tons of singing and dancing. I wondered if she would feel out of place in the 1st to 3rd grade class with Gracie, but I wanted her to be with someone she knew. Hope, who is also 14, is a helper this year because she is too old to attend VBS. I wanted Jasmine to be able to enjoy VBS, even though she was technically too old to go. I thought it was an important right of passage for her first summer in America. Our church is very small and very accommodating, so Pastor agreed to let her be in Gracie’s class.
All week long people would come up to her and say, “Hi, my name is ______ and Shuang Shuang would respond, “Hi! My name is Jasmine.” She always has that big old smile plastered across her face and everyone falls in love with her and her sweet, gentle spirit. I have been asked over and over again if she always smiles and I have to admit most of the time Jasmine is smiling. I told her that she could use the name Shuang and she said, “Mama, I like Jasmine. It is pretty!” I told her that is why we picked it because it means beautiful flower and she is just so pretty. (Which got me another one of those 100 watt smiles.)
She went all week with Grace, Hope and Cassie (who is 21 and is the music director). They sang, laughed, danced, did crafts and had a wonderful time. We took the bus a couple of times and that in itself is a grand adventure!
The gentlemen who runs the rec part of VBS is an older, retired gentlemen, named Tom, who is just as sweet as can be. One of my favorite moments of VBS happened during rec time. They had mowed a giant square with a little “X” in the middle for base. All of the children were set to play tag. Cassie took Jasmine to the side so she could watch, but Tom grabbed her wheelchair and said “No way, we get to play too!” and proceeded to wheel her all over the place while she giggled and giggled. I love that our church has been so wonderful about opening their hearts to our children and including them.
One night after she came home and told me all about her fun, I started thinking about how different her life is now. Thinking about where she would be if we hadn’t gone and got her. When we first asked about what happened to children who turned 14, we were told that she would have been put out on the street. After having met Jasmine, we knew that couldn’t have been possible. She isn’t able to sit up by herself, roll herself over, or even dress herself. If she falls over, she is not able to move. There is no way she could have lived on her own. We later learned from a reliable source – “I believe she (Shuang) definitely would have ended up in an adult institution –and they are just heartbreaking. I have only been to two on my trips – and the conditions just haunt me.”
That is heartbreaking. Heartbreaking because she really is the most beautiful soul. How she has managed to keep this beautiful soul intact after all she’s been through just amazes me. Imagine what your personality would be like after having been abandoned right before your 8th birthday. She must have been loved and then as she started to lose her mobility, they decided to abandon her. I look at little Gracie, who is also 8, and I can’t imagine what that would take and I can’t imagine what that would do to her heart. I can’t even wrap my head around it. Not only that but Jasmine has some really, really nasty scars. She has what looks like burn marks about the size of 50 cent pieces on her legs. She has one that goes from ear to ear under her chin, possibly from a nasty fall. Plus, a few others. I know what her leg ones look like and I pray that they truly weren’t intentional burns, but the reality is they are too perfectly shaped to be a splatter burn and they are too deep to be a small burn.
But through all of that and six years in an orphanage, this little soul didn’t lose her sweetness. What a blessing it is to be her mother. I hate, absolutely detest, that it took us so long to find her. Love Without Boundaries had advocated for her for years. There were other sweet families that wanted to adopt her and weren’t able to, through no fault of their own. She has been loved. She has been prayed for, by so many, for so many years. I can’t wait to tell her those things. I can’t wait until I can be sure that Google Translate is saying it right. She has always been loved. Her sweet spirit has shined through for so many years. Dan and I believe that she was a blessing as a big sister to the others in the orphanage and we find some comfort in the fact that there was a purpose to her being there. We got some very sweet pictures and videos from her time in the orphanage from Love Without Boundaries. She was showing the other kids crafts and she is just so patient with them. She is so wonderful with the “littles” in our house. She is so kind and gentle. She takes them on her wheelchair. She reads them books and sings with them. She feeds them and is just so patient with them.
I can’t adequately give words to just how overwhelming it is to think of what her life might have been and what it currently is. Not because I want to toot my own horn about “saving” her. It’s not that at all. Truth be told, we never intended to adopt an older child. We never even opened our hearts to the idea until her picture appeared before us through LWB and our hearts were forever hers. It’s just the miraculous ability of God to make families. God did not leave her in the orphanage – man did. I believe that God did not intend to bring her harm. But in the end, all the bad that happened, has turned to good. She has impacted so many people. She has changed my life for the better and the rest of our family too. She is such a blessing. Such a joy. Yes, there will be many sad days in the future with her diagnosis, but the good news is we will all be by her side. She will not be alone through any more of her suffering. She will never, ever be alone again. She has a family.
Jasmine is happy. Jasmine is loved. Jasmine is funny. Jasmine is patience. Jasmine is LOVE! Jasmine is silly. Jasmine is joy! Jasmine has brightened all of our lives. What has happened in her life, may not make any sense in our minds, but I for one am happy that I get to be blessed with being her mother, no matter how that came to be and no matter how many years we may be granted.
If God has placed an older child upon your heart, don’t automatically rule it out. We had heard horror stories of what it meant to adopt an older child. For that reason, we had decided long ago that it wouldn’t be a good fit for our family. Yes, her diagnosis was worse than we had expected, but Jasmine is so much more than we could have ever imagined. Get all the information that you can, pray and then proceed. My prayer is more and more older children will find homes. My heart just breaks for those that don’t. May God guide you and bless you and may your heart be opened to all that could be.
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