The Bravest Girl I Know

Her bling!

Mama, hold me..

Blurry, but oh that smile!

Kisses to all those praying for Mavery! She has the BEST kissy lips around!

In 33 years, while I have had many adventures, I have had a very blessed life. In the first 3 years of my life, I was born into a loving family, and stayed in that family.

My 4th daughter is just 3 years old. And in her 3 years she has been through more than most people could even imagine.

• She was born to a mother in China.
  


• She lived for 6 weeks, I assume in this mothers arms.



• At just 6 weeks old, she was put on a train, alone.
  


• She was taken to an orphanage and given a new "family", meaning the orphanage kids.
  


• She was discovered to have a major heart condition.
  


• She went through open heart surgery.
  


• Her orphanage changed locations.



• She was "posed" for pictures, something she had probably never done before, while hearing that these photos might bring a mama to her.
  


• She saw white people for the first time showing up at her "home" and taking away her friends.

She began to receive mail and pictures from someone saying they were her mama.

• She met this crazy lady who took her from all she had known.
  


• She spent 2 weeks trying to figure out why these people were in China with her, then spent 14 hours stuck on a plane with them leaving behind everything she was familiar with.
  


• She has gone to more doctors since being in the US than in her lifetime.
  


• She has had her blood drawn, been poked and studied.
  


• She has been given something to drink that made her sleep and woke up in extreme pain from more surgery.
  


• She has had her chest broke open 3 times.

And still she smiles. In 3 months

• She learned to trust and let me love her.
  


• She learned to love me back.
  


• She is learning what a family really is.
  


• She has gone to doctors and had tests done and looked into my eyes to see if it is going to be ok.



• She has trusted me when I have forced her to let someone look at her chest.
  


• She has trusted me when I have taken her to a hospital, 4 different times now.



• She looks for comfort in my arms.
  


• She wants to talk to Jesus every day and says "thank you Jesus for (and names each of us) and knows to ask Him to heal her heart.

Mavery Raye JinCong, so many things for one little person to endure. But God has given her a fighting spirit and I know He has BIG plans for her. I am in awe of Him and all He has done.

Prayers for Marks brother Brett

My brother in law, Brett, is going in for brain surgery tomorrow, Tuesday February 3rd at 7:30AM. I ask that you would once again join our family in prayer. It has been very hard for Mark not being able to see his brother before this surgery. Their family lives in Kansas City, so it is just to far to be away from Mavery still.

I have not mentioned this before, but Mark, his brother and their father all have a genetic disease called neurofibromatosis II (NF2). This is benign tumors that grow on different nerves. Typically they grow on the auditory nerve, but they can grow anywhere. Mark has them on his spine, had one on his hand, but they seem to be most common in the head. (Mark also has them in his head) Their father did not know he had this condition, till he passed out at dinner one day when the boys were young. They found them and the tumors were already pretty large. When they removed them it caused him to lose complete hearing along with causing some facial nerve damage. Mark had surgery in college to remove a tumor and has partial hearing loss in one ear. This will be Bretts first surgery, and they are removing a tumor that is the size of a golf ball. It will last 5-8 hours. This is just being done on one side, however eventually the other side will need to be done. He will lose his hearing on this side, but they have told him his facial nerve should not be affected. Of course there are a ton more details about this condition, but it is just so confusing to explain it all. It is such a hard disease as their are many different "thoughts" about it. Mark has talked to a specialist who says that they should try to lazer the tumors out, it will preserve the hearing. Other doctors say no, if you do this you risk them growing back in triple the size. Of course we want to believe that a laser might work, however, how do you know what to believe? Brett's tumors are growing quicker and in a different location than Marks, so he needs to get his done. He has spent much time in prayer and research and feels surgery is what he needs to do. We can't ignore Marks, but need to get through Maverys heart stuff first before we can even think about making a decision for Mark such as brain surgery. ;-(

So, if you would, please join us in praying for Brett tomorrow and as he recovers over the next week. My inlaws headed out today and I know it is hard on them going from one surgery to another in their family. If you remember, my sister in law, Amy, lost her mom last April. She had lost her dad the year before. It has not been an easy time for her and I just ache for her as she sends her husband in for surgery for such a long time. If you will think of Mark to. He has been through this surgery and it was not a fun time. On top of we are having a hard time watching Mavery hurt, and hurting for his brother. Just a hard way to start out 2009 for all of us.

This is HOME!

Walking to radiology
Our room, standing in the doorway looking in.

Dressed and ready to go home!

This is standing on the side of Maverys bed. From curtain to curtain would be the "bad" side of the room!

As you can see, this is standing on the other side of Maverys bed, looking to all the space on the "good" side!
All our stuff packed to go home!
The best cupcakes ever from my friend I adore and have never even met! I set my cell phone there so you can see how large they are! I might have to visit Jillies cupcake Bar very soon. Before I start the Jillian workout of course.
Mavery so excited to go for a ride! Notice the puke bucket the nurse is holding!

**started writing on Saturday, finished on Monday.

For the second time in 3 months Mavery has come home in a major way. To hear her today saying I want to go home mama, HOME, it melted me. And to think that just days before she was in surgery, it is a miracle. I asked the doctor today if this is normal to leave so fast. They said it is not unheard of, it is just best case scenario. I told her we have people praying for us ALL the way around the world, and we know God is listening. How could anyone question that? This little girl, who just 3 months ago lived in China as an orphan, is so, so loved by so many people. God, is the author of her story, every single page of it.

We went down for a chest xray and she did well again. I guess she is getting used to these tests. It looked clear so they said we could go! By that time Mavery had perked up and I felt more comfortable leaving. Knowing she would do better at home surrounded by things and those familiar to her. While we waited for our ride I made a quick run to the 5th floor. Their is a Ronald McDonald Family room on this floor. If you ever have to stay at Childrens, (I hope you do not) check it out. It is brand new and there is a large kitchen with tables and chairs, microwave, oven, and snacks available. There is a huge living area with leather chairs. Computers to use. A room she said you could nap in, it was in use so I did not see. 2 bathrooms that were very clean and had showers, much nicer than the family lounge. Also a few washer and dryers. It feels so NOT like a hospital, it is a nice retreat for families I am sure to just get out and breath. Only open till 9pm though, so no staying over night.

As we left I did still see Kennys family in the lounge. I did not go in this time, I had no idea what to say. Here I am leaving with my child, and she is still waiting for her 3 month old to die. I just can't get her out of my mind.

We really enjoyed our Physicians Assistant who stayed and talked with us for a long time Saturday. Some medical staff are just SO caring and it makes you so much more comfortable. Like Dr Ivy, who wanted to take Mavery home! I know that she really honestly cared about her. Overall I thought everyone was really great. I was not nearly as impressed with our nurses once we moved out to the floor. Our first nurse was awesome out there. She removed Maverys tube and wore her splatter so maybe that helped! ;0) But after she left us, I felt like I was simply a number. Room 7-1 Bed B. And it was not as if they were overworked, the floor was almost empty. I just hope that if someone is going to be a nurse, they are doing it because they want to help people and can remember that us mamas need to feel you loving our child as you care for her.

They gave Mavery codine before we left so that was helpful for the drive home. First time to have her in her car seat with no screaming! All the kids were excited to see her and know that she really is ok.

I think Sawyer was by far the most worried about her and I think it did him good to see her. Though he refuses to be in the room to see any scars and is not excited about her going back to the hospital!

Her incision as of today (Monday) is looking good. there is a hole where the drainage tube was, and I emailed a picture to the hospital today because it really is a hole. They said it looked like the stitch broke, but it was fine. I think the bulge on her chest looks larger, but that may be from swelling. The scar is longer for sure, and I can't remember why that is, but they did say why. Part of the scar is bruised looking and she has been saying "that hurts" more today than before. She did not not sleep well last night, so I am praying we get a better night. It is exhausting following her around trying to make sure no one bumps her, that she does not fall, that nothing falls on her etc.. Sage went and played with Shannon (& Mr Jerry, she is still talking about him!) today and for that I was thankful. When it is just Mavery and I, she will snuggle more. If Sage is here, she wants to follow her. If you know Sage, you know she is in constant motion. I can't imagine how bad it would hurt if something hit mavery in the chest right now. So I am a nervous tired wreck! ;-) We were thankful for dinner tonight from my aunt & uncle. And chocolate pie and frozen meals that came yesterday from Marti. YUM!

We are thankful to be home, and thankful that Mavery is doing so amazing. Thankful for your prayers that we know our covering us. Why should anyone be surprised with how she is doing? We know that God has His mighty hand upon her, that He has held her long before I did.

I am working on another post with another prayer request for my brother in law tomorrow who is having brain surgery. Please come back and read it, will have it up tonight.

Pictures Saturday & Sunday

Watching "Dola" with Dola!

Enjoying some goodies sent from Daddy's work!

A build a bear pillow from the hospital. Build a Bear has teamed up with the Cardiac ICU to provide these sweet bears. Along with a $25 gift card from the store. Very sweet! (notice the tape leftovers all over her face, finally got that off today!)

Taken tonight while getting ready to change her bandage. I just love that smile!
See how much fun we had today, we decorated in stickers! Actually the entire house is covered in stickers.

I can't find my small camera I had with us this weekend, so I am still working on the post from coming home yesterday. She is doing really well though. I had visions of her being so wild and crazy and I guess what the doctor said is true. Kids know their limitations. She is happiest just to sit and snuggle, which is good with me! The rest of the kids went to my parents house last night and for the day today. Which was good. I feel as if I have to follow her around and that is hard to do with all the other kids here. Plus, tonight when they were all here, I turned around and she was standing on the couch. So, school tomorrow will be a good thing. That and Sage has a "date" with Shannon! I am so on edge that I can really only handle Mavery right now.

We changed the dressing tonight on where the drainage tube was and I had not seen that yet. It is just an open hole, no stitch. Besides about making me sick to my stomach, it just does not look right. It is not bleeding, but open. So, if you are in the medical field and are comfortable to look at a picture of it, I would like an opinion on it. I will call the doctor tomorrow to just ask about it.

We slept well last night. She did cry out alot, but just wanted to be reassured I think. She has just been through so much, I feel so bad for her. Thank you for continued prayer for all of us.

Moments that took my breathe away

• Being terrified for the last month that God had brought Mavery home to us, for just a little while.
• Watching them carry her away from me, and her letting them.
• The doctor telling us that surgery was over but that things were not fixed.
• The doctors face when he told us that they were taking her back into surgery.
• The peace that washed over me during our pastors prayer while she was back in.
• Seeing the doctor walk back in and tell us she was ok.
• Seeing her after 8 hours of being away from her.
• Watching her and feeling her pain.
• Every time a doctor or nurse mentioned how scary things were for awhile, after surgery, hearing them talk about how big the aneurysm really was, and knowing she is our miracle.
• The notes, the prayers, the food, the gifts, the food for my kids at home, everyone who has helped and the love we felt.
• Hearing Mavery say, ow mama, it hurts and not being able to fix it.
• Seeing her daddy stay in the hospital the entire time with us and not even want to leave.
• Feeling the pain of others in that hospital this week.
• Hearing her talk to Sage for the first time.
• Hearing her say Home mama, home, over and over. And thinking of how thankful I am that God brought her home.
• Watching her run into her Grandpas arms once home saying I love you Papa and him running just as fast to her.
• Knowing that this moment is just as big as her first homecoming and praising God for allowing her to be mine.
• Watching her sleep in her own crib.
• Changing her bandage tonight and praying that God would just heal her little heart.
• Thinking of all that God has done this week, and all that I know He is going to do with Mavery.

Mavery calls Sage from the hospital

This is the first time Mavery called Sage from the hospital. So cute! Today Sage was SOOO excited to see Mavery! She was hugging her and saying "Mavery we talked on the phone, Mavery, you are my BEST friend. " Very very sweet and I am thankful for the bond that God has obviously knit together between these 2 little sisters so quickly. Mavery was not quite as sweet today towards Sage. She came in and was out of it from codine. Then she was mad because Sage wanted her skittles and lipstick and stickers and well her stuff! ;0) But now that Sage is away at Grandmas for the night she has been asking for Sage and wanting to call her!

**Scroll down to the bottom of the blog to pause my music on the player. You need to hear this adorable little voice!

Friday Pictures

Talking to Sage on the phone last night. I can't get the video to upload here.

Playing with her silly puppy from her Grandma and Grandpa!

Daddy putting lipstick on her! Notice the bling on her arm.

Putting lipstick on Daddy! ;0)

Snuggling on her pillow from Esther and Shane! Wearing her purse and jewelry and boots!

Going Home? Saturday

We all slept well last night. Mavery did not even need alot of pain meds. She was so hyper and it took us awhile to get her to sleep, but once there she stayed asleep pretty well all night till 730AM!

She woke asking for eggs so we ordered food for her. Dr Huddleston came in and said we would observe her for awhile and if she is doing well can go home today! That means eating, walking around etc.. So then her food came and she started eating bacon (while another doctor was in here) and started gagging and we all thought she was going to puke. She calmed down, but the dr said, if she throws up we probably wait another day. She is acting better, but we are just going to take it easy and watch her. As much as I want to be home, I don't want to go home a nervous wreck everytime she takes a breath. She is more calm than usual. She is playing with stickers so maybe in a little bit we will try walking again.

Maybe bacon was a little to much celebration for today! ;0) They told us no restrictions we just want her eating. Our little chunky monkey likes her meat so we figured that was a good option! And it tempted her that is for sure!

They did say yesterdays echo showed there is still narrowing so we will for sure need another cath. How soon, Dr Goel will decide.

We will let you know if we are leaving. My guess is if we do it won't be till late afternoon.

Long Day but Good-Friday

I have lots of pictures that I want to share of today, but want to get this blog done first.

It was a busy day. There is never a quiet moment in the hospital. We went down for the lung profusion scan. Mavery was quite excited to ride in the wheelchair with me! She did AMAZING during the procedure. Our girl has charmed the entire hospital out of every sticker they have and band aides, she loves to hold band aides! So while she was being scanned, everyone in the room just kept bringing over stickers, and more stickers, and band aides! We could tell ourselves in the scan that there was not much change, you can just see that the left lung is not working much. And the lady doing the scan said the same thing. Our doctor came in tonight and had not seen the results but said he was not surprised by this and said we would most likely be back for a cath with in the next 6 weeks to 3 months. ;-( We do know the surgery had to happen this week because of the aneurysm. I just hate that she will go through yet another thing with in months of being home.

After the scan they moved us to our new room. I was in a small panic because they put us in the bed 1(by the door) and a baby was in the room. Now, if you have been to Childrens, you understand. But these rooms, they most certainly were designed by a man. And a man that does not have children is my guess. (no offense to men, really) Because you walk in and there is a bed, w/ a chair next to it. And that is it. Then there is a bed next to that. But on the other side of the 2nd bed is a couch, a desk, cabinets etc. The door to the bathroom is right next to the 2nd bed, the sink is at the end of the 2nd bed. So if you are bed 1, bad news. If you are in bed 2, PERFECT. Lucky for us the baby was moving out of the room, so they just slid us over to bed 2, and actually we have no one in the room so we are spread out all across it. They said they are empty and we should be fine. Yeah God for this space tonight! We did try to get a crib for Mavery but she was having none of that. Hard to blame her, they really did look like cages. So hopefully there will be no escaping the bed tonight. We are pushing chairs up against the rails, making bumpers out of blankets etc..

I can't remember if I talked about them taking out her arterial line. It was stitched into her shoulder. No problems there. After we got moved in they took out her drainage tube. I did not watch, but I heard lots of comments from our family and friends who did watch. I do know the nurse was splattered in blood, quite alot, and she was talking about how long the line was. So gross. Even looking at it was making me sick. Just this tube going straight into her chest. Ugh. They cleaned her chest and it looks good. They did have to make a longer cut this time, but it is thinner. It is pretty long though, poor thing. The bump is still there, I know they said sometimes they can try to fix it, but sometimes they can't stay in any longer. I did not ask the reason because I figure if they could have fixed it, they would have. The bump actually looked larger to me, but I assume swelling. She has gauze covering it now and we will change the dressing on it for a week till we see Dr Goel then he will tell us if we need it longer. No bath for a month, except a tiny bit of water. No soaking. Her and Sage will miss their swim time together!

They did give her morphine for the tube removal. She cried a little, but not much. We went down next to do another echo and EKG. She and I both about fell asleep laying on the table this time. The guy told me to go ahead and nap, he promised not to make fun of me if I was snoring and drooling all over Mavery! These tests are to tell just how the heart is doing after surgery. The doctor had not seen these tests when he came in tonight so we will find out tomorrow what they say. We also had a chest xray done. She laid on the table and said cheese as they took her picture!

We came to the room and she wanted to sit on the couch and play with her jewelry and her purse. Ate a sucker then wanted to go for a walk. The change in her is amazing. Really. 48 hours after being cut open twice, and she is walking the halls with a smile. How can anyone say God does not hear our prayers? I know that people are praying for Mavery all around the world and He has answered! Every time a doctor or nurse talks about how well she is doing or does during a test, I tell them that this little angel is covered in a blanket of prayers. I love to share her story about where she has come from and what God is already going in her little life. Can you even imagine what He is going to do with her?

One way we know that Mavery is feeling better is that she is back to her fashion concerns. Her bracelets are covering her arms, despite the IVs. (she did talk them into taking out an IV, she kept telling them it hurts. I really think it had something to do with it not matching the rest of the bling. ) She has her necklaces on. And she has not let go of her purse. She was very concerned about her purse while we were down getting tests today! Oh and her boots, have I mentioned the boots? Today the nurse was cracking up because she had to potty. She comes out w/ her booty hanging out of the gown, but by golly she has her boots on and is carrying that purse! I wish I could have snapped a photo, but it takes an army to pee you know when you are hooked up to so many things!

I was very excited to be able to take a shower in our room FINALLY. We have our own bathroom in here and can store our cooler. It's the little things you know.

Ok, it is taking me so long to finish this because we now have Mavery back. Wild girl! She was sleeping when I started, but then woke up. She managed to pull out her 2nd IV because of all that bling. They said she can be DONE with IV's as long as she keeps drinking! She is guzzling sprite and going pee like crazy so these are good things. Because we were told tonight that if she pees enough, we go home TOMORROW!!!!!! Can you believe that? 3 days after surgery? Of course this came from the nurse. When I asked the doctor, he said we will see. We want to go home tomorrow! After she pulled out the IV she decided she wanted to walk. So we walked the entire floor and she enjoyed showing off her boots and purse to the nurses. She is so silly.

Dr Ivy, the doctor from Taiwan I told you about? She came to our room tonight to tell Mavery bye. She asked Mavery to come home with her because she loved her so much and told her she would really miss her. She was very excited because we brought up all her chinese paperwork and she sat and translated it trying to figure out some heart history. Unfortunately it did not help much as it ends at surgery. We are going to try to track down some more information through Maverys orphanage, or maybe even my calling the hospital. Dr Ivy was very willing to call the hospital in China to try and find out more. I have no idea if this is possible, but we will see what we can do. Not sure that it will help in any way, but I know our surgeon is very curious on their line of thinking on some things. I promised Dr Ivy we would come visit her when we came back to the hospital.

My sweet friend Tracy had some amazing cupcakes delivered. Just what the doctor ordered today! For mommy anyways! They are seriously HUGE and delicious and oh so yummy! Heavenly Tracy, really. They will just be rolling me out of the hospital I swear with the way you all are feeding me. I can't even begin to list the cookies and brownies and dove chocolate and all that is sitting here! Kind of mean isn't it when I just said I was going to start the shred soon? ;0) No, it means my girls KNOW me and know what helps me!

So, a good day for Mavery. We are line free(besides the monitoring) she is walking, she is smiling, and right now, she is eating skittles! And of course we are in a room all alone. Now, if we can be home tomorrow and see the rest of the kids! I have a video tonight of Sage & Mavery calling each other, I hope to get it up w/ pictures. SOOO cute.

I am sorry I am not able to respond to any emails, I am reading just cant write back and blog! I know some of you had questions that I want to answer and once home will do that I promise.

Fridays Agenda

I was hopeful today might include a shower for me, but maybe not, sounds like a busy one. We slept fair. She really did pretty well, just one time of being in alot of pain, telling me she wanted to be in the bed(though she was in bed), ow it hurt etc.. But morphine helped and thankfully she seemed to know me most of the night.
The doctor came in and said she looks great. They are scheduling the lung profusion scan(this is like an MRI and it measure the blood flow to the lungs, They give her medicine and watch as it flows through.) They will also take out the arterial line which is stitched in her shoulder and was used for drugs during surgery and after for heart meds. Also will remove the drainage tube coming out of her chest. Oh and will change her dressing for the first time. I asked the nurse if removing the chest tube will hurt and she said it is not pleasant. So I asked if we could do everyting at one time while on drugs today!
Please pray she tolerates these things well. We are another step closer to home!

Thursday pictures

Playing with her new purse. She looked happier before I took the picture.

Mavery wanted to take a picture! This was our nurse today!

Playing with her "dola" balloon! She has it at the end of her bed Michelle and she points to it all the time!

She settled down quickly, but was mad that I let Mark hold her! Of course later he was loving that she denied I was mama and cried for him! ;0)
Loving this in spite of going numb, my little chunky monkey!
Itchy, Please pray the morphine stops making her itch.
All those machines were working overtime yesterday!

I am sleeping with Mavery tonight. She went to sleep and I was out. Like slobbering, dead to the world OUT. Till all of sudden everything is beeping and she is sliding OFF the bed on her belly! (by her choice, she was awake and trying) I am right next to her bed so was able to grab her quickly but I really thought my heart was going to beat out of my chest! But she looked at me and smiled so at least knows Mama is here. I guess she was going to climb out of bed and take a hospital tour! The nurse came in and rolled up some blankets around the bed to make sure we have more warning! So I went to sleep again and all of a sudden hear her and she is sitting up on her own. Thankfully just sitting looking around. But I am kind of nervous to close my eyes now! She has been laying here for a long time just sweet little voice talking to me. She keeps telling me, "go night night mama". I tell her, you go night night mavery. So she says ok and closes her eyes, then peeks to see if i am really going to sleep! Or she tells me, I am going peepee in my diaper! Sage would be so proud! hehe!

Still hoping for that window bed when we change rooms and we are getting a crib this time around!

I am loving our night nurse, she is the sweetest thing ever.

Cardiologist Visit

Forgot to add what Dr Goel said today. (Our cardiologist. ) If you are a heart patient you have a cardiologist,who you see regularly. But they do not do your surgery, they refer you to a surgeon. So we had a surgeon for the cath and a different surgeon for this open heart.

He said he thinks that the "other problem" is probably still related to the problem we just fixed, the narrow artery. But when you are doing a heart cath, you can only look at one certain area, and then a surgeon inside can only see one area. So, they believe that there could be narrowing of this same artery farhter into the lung, which makes sense with how narrow it was to begin with. We will visit with him in one week and he will do another echo of just the area that is a problem. If they see narrowing in that area, he believes it will be able to be fixed with a cath & a stint. Which might happen in 6 weeks. (not before so this repair can heal) So basically we should find out more with in 2 weeks.

He said the reason they did not stint this narrowing during the cath earlier this month, was because they knew the aneurysm had to come out. If they had put a stint in there, they would have had to cut through it to get to the aneurysm. Today he made the aneurysm sound more serious than he did before. And a few people that came in said it was "very" large. Dr Goel said he had not seen an aneurysm that size in over 20 years. It is something to do with the material they use to patch. What they use here now, does not cause aneurysm. (I asked if there was a chance of another)

He also could look at the echo and decide that nothing needs to be done for now, and we will just do echos regularly to watch it. Maybe every 3 months, maybe every 6. I am trying to prepare myself that we will probably be back here before to long. But will be happy to wait and not have to put Mavery through anything else soon.

I apologize for the poor grammar, but I am just to tired to really care!

Wheres Mama?

So I wrote out the last post and all was well. Then Mavery began to get hyper. Then she fell asleep. Then woke up screaming staring right at me telling me she wanted her mama. Pushing me away and ticked off. At first I almost lost it. Then it actually became kind of comical. At this point what can you do, cry or laugh. I really just want to laugh, I can't hardly take sad right now.
The nurse said this can be normal coming off of drugs and being on morphine. Thankfully she is not hyper and she does know Mark. I guess if I had a bald head I would be easier to recognize! I will trust this will wear off and leave my hair alone for now. Though a shaved head would be easy....

The times I have been in the waiting room today, my heart just breaks. I can hardly stand it. A girl was in there just sobbing and Esther & I went over to her and asked her if she was ok. She said the doctors told her that her 3 month old baby boy will die by tomorrow. From what I could understand (she is vietnamese) her baby got shaken baby sydnrome at the babysitters. He is brain dead. His name is Kenny. She asked me what was wrong with my child. How do you tell her that my child is doing so good? Tonight I heard a man say his children were in a terrible sledding accident today and it sounds like his daughter is in a coma and not good. I just sat out there and prayed for peace and for Gods arms to stretch around the entire room. So many tears in this place. Isn't it a blessing to know that God holds each tear that falls here? He records them in His book... When you pray for Mavery, please think of these other families, especially baby Kennys family. Their sobbing will echo in my heart for a long time.

Mark left the room and Mavery went frantic wanting her mommy and daddy. This is not fun. She is calm and laying here staring at me daring me to come near her. So I just sit back and wait. I know she will come out of this and as long as she is laying calm, I am really ok.

If you could, pray for my kids at home. The school called today because Sawyer felt sick. I really think it is worry. All 3 older ones will be at friends houses tomorrow night so they are excited about that. Sage told Mark tonight she does not have a friend no more. Hopefully this weekend the kids can come see us up here and hopefully we will be home very soon!

Silly maybe to pray for, but our nurse told us to hope we get a window bed tomorrow on the floor. Much better she claimed than the other side of the room. You get a bed versus a chair. Sounds good to me, can I preorder that? No. Ok, I am not against asking God for a little favor for our stay over there! ;0) A good nights sleep is a good thing, right? And on that note, we are going to try to get sleep here. Who knows what our night or tomorrow holds!

Thursday

Today has gone pretty well for Mavery. She slept alot and when awake was happy and talking in that sweet voice. She was excited about a new purse from Grammy and stickers. We were excited about homemade dumplings made by Lisa & Sheila for lunch! Thanks!

Mavery ate a couple of crackers, but that is about it. I can tell she is more uncomfortable today. There have been quite a few times that were so hard to watch her in pain. I was holding her for a long time and she was sleeping on my lap, she was very restless. She finally started really crying and asking to be put in bed. So I know she is in pain because you know Mavery is like superglued to me most of the time! They have given her morphine now for the pain. We went alot of the day with only tylenol so when she was drugged she was sleeping comfortablly.

We will move to the floor tomorrow. We could have moved today but I requested we stay in ICU one more night. I like having our own nurse, it just makes me feel better. And they agreed it was fine.

They have now removed the cath, so she is able to get up and potty! Which is not easy with all the tubes. We did get one more line out so we are getting there.

The amazing thing is how she is acting. I expected her to be pulling out tubes and wires and she is not at all. Really calm.

We had visitors this evening bearing REALLY yummy pasta! We feel so spoiled by everyone taking care of us.

Will write more...

Pain & Red Envelopes

Mavery woke and was really hurting. You know as a mama you can tell the difference between the ow, I am ticked off and the ow I am in so much pain and I want you to fix it mama. And so as a mom you also know how hard that is to watch your child hurting so badly and asking you to pick them up and the break your heart into a million tiny pieces kind of pain that you can do nothing about but cry over them and pray that it goes away quickly. They came in and took the oxygen off, which had me nervous because I don't know if I mentioned that Mavery has a thing of holding her breath. Which is normal and all I know for toddlers but not something you enjoy seeing after heart surgery. So I asked the nurse if she was sure that it is safe. (don't you know that the nurses and doctors love it when we act as if we have ANY sort of medical knowledge by asking them these things!) She said it was and if she held her breath it is ok as long as we get her to eventually take another breath.

By the way our nurses have been wonderful as have all the doctors.

So tube out of nose, good thing. Slowly taking some of the other lines out today. I asked again about moving to the regular floor and our new nurse said maybe, but not sure. She said we would watch and she said sometimes they will wait the extra night. I am mixed because I know we will be sharing a room after we leave this one and can you imagine having Mavery as your roommate? Or me for that matter? ;0) But she said then we have a bathroom in our room, can eat it in the room, have a bed etc.. Here we just have a chair w/ a footstool. Which is to far from the bed to see Mavery so I sit in just a not as comfy chair so I can jump up every time she makes a noise.

Doctor did come by this morning. I asked again about the patch, why they did not just put a new patch over it in the first place if they knew there was some holes. (back to the we think we know more than the doctors) It is WAY to technical for me to explain, and I sure wish doctors sent emails so I could go back and make sense of anything. It made sense when he explained it and the bleeding was not going on when they closed her up the first time. They used tissue to patch it and that tissue came from leftovers from her aneurysm that was in there.

He again mentioned the lung profusion scan which is sort of like an mri in a way. He said it needed to happen after a few days but can't happen on Sundays so if we go home he will schedule it for a later date. I reminded him that if we waited, she would have to be sedated because there is NO WAY this child will lay still for that test. He then said we would do that tomorrow so she is already on lines to be sedated. It will just let them know more about those pressures.

One lady that has been in the ICU, a doctor of something but we have seen so many I honestly don't know of what. Anyways, she is asian and asked about our adoptions and Maverys chinese name and come to find out she is from Tawain! (which is where Esther, my brothers girlfriend is from) She was here last night and today brought Mavery a red envelope for Chinese New Year, which I just thought was so sweet!

Speaking of Esther, she and my brother came to town! I think it was partly because they had been with out electricity for awhile, but I know that they also wanted to be with Mavery. We can't wait to see them!

Last night my cousin came with a cooler full of drinks, enough for the entire waiting room I think! Along with chocolate brownies and grapes. She must be TRYING to help me on my road to eating better, kind of! ;-) We have also had other bags of goodies brought and I am thankful for those. Thankful for to many things to even list right now!

Pictures After Heart surgery and today

I was trying to decide if I should post pictures of Mavery. I know many of you let your children see the blog, so I don't want to scare them. But, I know how helpful it was to me to see pictures of what to expect her to look like. Plus I know you would like to lay eyes on Ms Mavery and see how she is yourself!

The first 3 are all right after we saw her for the first time. Out. Another good thing about that gorgeous asian skin. She does not look so pale like we would! Just a nice shade of orange! ;-)

This was right after the breathing tube came out. We did not want to use the flash because we were trying to keep her still and calm!

These were just this morning. So fuzzy, becuase they have the room very dark and again don't want to use a flash. But I love it when she sleeps like this! Though soon after she did this the nurse had to come in because she was setting off an alarm by laying on a wire.

Night One/Wednesday and catching up.

I wanted to write while Mavery is sleeping and I am awake! It is so quiet now, and she seems more peaceful. Mark stayed in the room with her last night. He made me go sleep, knowing that if I crash before she is fully awake we are in trouble. And thankfully I did. For those who know me, you know what a high maintenance sleeper I am. But I was able to sleep some in the lounge on a couch. I came back in the room a little before 5 and he said he had not slept at all. She cried out alot, as she does at home. She is just a restless sleeper anyways. When I came in the nurse was getting her a cup of apple juice and untied one of her arms so she drank that. Maybe that is why she is now resting. She told me all the stuff they are giving her normally makes them sleep deep. ;0)

Wanted to kind of go back to our day yesterday. It will be random and out of order, but I want to remember things, even though some I want to forget if that makes sense.

We came in to see her and I did not think she looked as bad as I expected for the first time. I had been able to see pictures of babies after heart surgery and was so thankful for a blog that had shared that. Maybe that helped. Maybe it was just the relief of laying eyes on her and being able to touch her. They told us it would be at least 24 hours for the tube to come out and to expect to be here through next week. They had her in a parlyzed coma, and there is some fancy name for it, but basically they had her out. Could not move. Which to be honest was kind of ok with me. Knowing what we had gone through after cath, knowing that moving had caused her to need to go back to surgery. Out really made me feel safe. But not even 30 minutes later the doctor came by and said they are going to wake her up and take out the breathing tube. So... We braced ourselves reminding them that she is going to be a handful! They assured us that getting her off the vent is a good thing. Slowly, she started waking up. I was not prepared for that. Her whole body was jerking, kind of like a seizure almost. Her eyes were rolling, I did not like that at all. They told me that was normal. I am just not a good hospital person. Everything beeps, she is shaking, I am not over the shock that she had 2 surgeries today, I had my eye on the chair near me in case I had a heart attack myself. Then they asked us if we wanted to watch the tube come out. I asked if anything crazy was going to happen. They promised she was going to be fine so we stayed in with her. I did alot of praying. With that out, Mavery was one mad little diva! First thing, I want to eat, then I want a sucker, then I want my backpack. She was in and out of it, but then the thrashing began. They had her arms tied down but not her legs. So she was trying to roll over, despite all the lines and tubes. Remember, all this stuff keeps beeping, she is upset, she has a blood drain coming out of her and they showed me how that had filled so fast over and over earlier(why they reopened) and so my eye is on that, all the while I am thinking, WHY IS SHE AWAKE HOURS AFTER THESE SURGERIES!!! Everything they tried, she was still awake. Then she began with Mommy it hurts, mommy owie, mommy I have a belly ache. (she calls her whole chest her belly) so finally they gave her morphine which let her settle down. It is SOOO hard seeing your baby hurt and struggle and not being able to fix it. And I have had to go through that twice this month with this child. Thank goodness January is almost over!
After awhile they told me they gave her something (name has escaped me now) and the name sounded very familiar in a scary way. I told them I was pretty certain that is what they gave her after her cath and if you were with us that week, you know that was VERY bad news. The nurse said they would not give her anymore of that. Smart idea.
I love just watching her sleep. But I am ready to see her awake and smiling and laughing and back to my Mavery. Ready even to hear her tell me 100 times that she wants to eat, or drink or anything she wants right now.
I am sure that today will be very tough. I am not sure how long they will keep her sedated. I assume for awhile. I hope for awhile just for her sake. Because I don't like her being tied down but she has to be for her safety. So sleep really is a good thing.

You all have been truly wonderful. Your love and prayers, they are what got me through. We had our family here surrounding us, and you all were here with us in our hearts. We KNEW that so many people were down on their knees for our sweet girl and still are! I knew I could pick up my laptop and open it up to tons of new emails of encouragement. I know that you had friends of friends of friends praying for Mavery, and God heard! I know we still have a road ahead of us, but we know that she is here and going to be ok. We are going to be ok.

Update

Just typed out an ENTIRE long blog and blogger and the network here lost it. AHHH. So short version becaues I am so tired i can't see straight.

The breathing tube came out not long after we saw her. Which was shocking because when we first saw her they said at least another day. But she is doing wonderful off of it. (as far as breathing)

She was VERY agitated and restless and has shown them all her fighting spirit here. It has taken alot of tries to find what will help her relax. She was in pain, she was telling me mommy it hurts, mommy owie, mommy my belly aches. She is calm now, I gave her a pacifier! And she is sleeping, so hopefully will stay that way.

They still think we might come home this weekend! PLEASE let that be true!

Hope to write more tomorrow, because I want to remember my thoughts of this day, but while she sleeps, I need to sleep.

THANK YOU, so many thank yous I can't even start. Please keep praying. We are not done yet.

PRAISE GOD!

The surgeon just came out and said it was bleeding from where they expected and they were able to repatch it and stop it. She did well during the procedure and is stable now. God IS here, we know that. Our pastor came and we spent a long time crying and praying and not 5 minutes later the doctor came out and said she is doing good. So we turned around and cried prayed some more in thanksgiving! I am reminded of the verse STAND IN AWE of GOD. We are in awe. Thank you Jesus for an amazing surgeon and for the gift of this precious baby girl. I should be able to finally lay eyes on her SOON. Now, I did ask if there is still a risk of bleeding and he said of course. But we are believing that she is healed and we are going to rest in that tonight. Thank you SO Much for all of your support. I will be back later!! Keep praying though, of course.

MAVERY BACK IN OR

PLEASE please pray. They came to get us from the waiting room (a nurse) after what I knew was to long from what they had said and as we walked out the doctor was coming towards us, which I knew was not good. He said that she started waking up and that her blood pressure went crazy and that she started bleeding. So they are going back in to stop the bleeding. I asked if there are risks and he said yes, but not as high as if they let her bleed. He said about an hour, and they were doing the surgery right in the CICU. (cardiac intensive care unit) Which I am not sure if that means they were rushing or it is not as big of a deal.

We have a fighter of that there is no doubt. Who wakes up in recovery after surgery? Our Mavery. Mark says there is a point at which you are to strong willed! But we know that is what has got her to where she is.

I hate this. I just want to see her, I did not get to.