Saturday, January 31, 2009

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

video

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.

Friday, January 30, 2009

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, January 29, 2009

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.

Wednesday, January 28, 2009

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.

She is out of surgery

The surgeon just came in. She is out of surgery and we will see her in an hour or so. But, the doctor is baffled and this is never a good thing. He did what he planned to do, removed the aneurysm and fixed the right and left artery, both were blocked. But, the patch that was already in place, needed to be repaired. There were a ton of "leaks" in the patch and they spent a long time fixing those. The concern is that she could continue bleeding from these holes, but she had not stopped, or something along those lines. So, they have left the vent on her and will watch her. If things are not better tonight, they will have to go back in. He THINKS things will be ok, and it will get better on it's own. But they don't want to take the cath out if they might have to go in.

The other issue is that the pressures were still higher than they should be after this repair. This is what baffled him. It could indicate more blockage farther out in the branches of the lungs. It is improved and there is no short term danger. They will do another lung profusion scan before we leave to check things out. It is not something that they will fix while she is here, he does not want anyone messing in there right now. He said he will talk to Dr Goel(our cardiologist) and we will decide on course of action for that.

We of course are very devastated and just asking that you pray with us. Most important that the bleeding stops and they do not need to go back in tonight. We will deal with the other problem later, but I just do not want her to be put back into surgery today.

Please pray for me as I finally get to see her soon. Obviously they are going to be keeping her very sedated and yesterday they told me "prepare for her to look dead".

On a good note, I asked when she can go home and he said he hoped she would be home in time for the superbowl! ;0)

Thank you!

So sweet Dennis & Michelle! How did you know I adore Dora? ;0) Mavery will be SOOO excited about her "Dola" doll. (that is not a typo, that is what she says) And skittles, she will be in skittle heaven! You are to sweet and we love it, thank you!

Update #1 from the OR

They called and said they had cut through at 9:10. She is on the heart and lung bypass machine and her vitals are good. Said they would call again soon and that the doctor would probably come out and talk to us after that update.

I don't know alot, or really what is going on back there. But I do know that God is in that operating room. He knit Maverys heart together and breaths each beat that happens. He knit her heart together long before I even knew she existed. He has written her life story on the palm of His hand and in His own heart. I believe He has big plans for my baby girl and that her story has only just begun.

I am ready to see her and just kiss those chubby cheeks.

Maverys Morning








I wish I had taken a picture of Mavery marching into the hospital. She had her robe on, sweet little houseshoes that look like cowgirl boots, and her bracelet. Not enough bling though, she was very happy that Jenny brought her a necklace and bracelet and flashlight and stickers! She was nervous when we went back and they wanted to start checking things on her. But once she got the happy juice, she was good! Did not take long. They came in to tell us that things were going to move very fast because there is a heart transplant after the doctor is done with Mavery. No worries, I made sure that they were not going to be rushing through Maverys surgery! They promised it was simply the getting started. Which is good, I hate sitting waiting for that.
She left me willingly, all it took was the doctor offering stickers and she was in her arms quickly! So we know that she was out of it. They will take her back and put gas on her right away. They brought out the mask to show her, it smelled like strawberries!
We have our own waiting room, which is nice. The door closes and you have alot of privacy. Couch, chairs, tv, nice. We have a phone in here and they promised they would call every hour with an update. I expect that should happen soon as they took her about 8AM.
It was hard, much harder than last time. I can't even go into that or I will lose it. So instead a funny.
She is in the hospital pjs and so the nurse came in to meet us that will be with her. First she calls her MAvery (like Apple). Then she said "he likes this". She said he a couple of times (first time I am thinking it was just a speech error) I said, "you know she is a girl right?" She did not. I was thinking, what a surprise that would be when they go to put in the cath! ;0) Poor Mavery and her boy haircut!
Thank you for your notes and prayers. I will keep you posted. And please keep the transplant patient in your prayers. How scary. Obviously a family lost and a family gains. Pray for both invovled.


My Night before Surgery

11:00 PM Went to bed with 2 tylenol sleep

12:00 AM still awake & Mavery is restless crying out in her sleep.

12:15 AM still awake and Makenna comes in to tell me she really wants to throw up.

2:00 AM still awake worried that Makenna is going to puke, that I am going to puke and just worried. Mavery still restless.

2:15 AM Sawyer and Malaine come in because they want to sleep with us. Take them back to their room.

3:00 Still awake and cursing the makers of tylenol sleep because what good is it if it won't let me sleep? Worried about Mavery, worried about the snow coming down and the roads we live on, worried about the kids who are obviously upset. Worried..

3:45 look at the clock and think I should just get up and get ready.

4:20 AM the alarm goes off, I am dead asleep, finally.

4;35 Marks alarm goes off, I turned mine off and had gone back to sleep.

Rush around, get ready, cry, want to throw up, watch Mark try to get our van out in panic because our road has not been plowed, then with relief watch the snow plow come through. Watch ALL the kids get up at 5AM, load our stuff into Jennys car, who drove our babysitter Danielle out, because our car is so bad in the snow. Drive to the hospital with Mavery who screams most of the way because she hates car seats. Bad roads which makes me a stressful rider, feel like I have a 1000 pound weight sitting on my chest. I just wish it was 2 weeks from right now.

Tuesday, January 27, 2009

Random Things

  • So big on bullets tonight! But so easy to keep track...
  • We will have Internet and I will have my laptop.
  • My phone gets emails.
  • I will be updating the blog, if not me then Jenny or Amy will.
  • If for some reason you have a question that I can't get to you, you can email them TGAG624@charter.net which is Amy or Jenny at jauld83@gmail.com Just in case we go missing for some snowed in cuts off our internet reason there! ;0)

Prayer Requests for Mavery (& us!)

Just some things that I am asking you to pray for us:

  • Peace for us as she leaves our arms. Is that possible?
  • Strength for the days after.
  • HEALTH for all of us. Makenna has a stomach ache tonight and I am SOO worried the flu is still here.
  • Health for Mavery. Please remember that she has not had her immunizations, so if you visit we need to be very very cautious. (this will be for the month after also.) No children visiting please. That sounds so mean and please know that I hate being that way but I know that you understand! We can't take ANY risks.
  • BUT please know that I do not mind visitors! ;0) Or emails or text messages or blog comments. You know I don't like being stuck alone! I have treasured the sweet notes and comments you have left and hope that you know that I really appreciate them.
  • Pray for the surgeons. I liked him today, he was impressed with my daughter so that won him points! Though I think he was pretty sure Mavery would be directing surgery tomorrow if she could, he saw her spunk for sure! His name is Dr Huddleston.
  • PATIENCE for ALL of us in the next week. All who will deal with Mavery and with me!
  • our kidlets here at home. Mavery and Sage are really getting tight, more and more each day. I know it is going to be hard on them to be apart. It is hard for me to leave them again after just getting home. I know that they are in good hands, but still hard. We hope they will be able to visit over the weekend, but we will have to wait and see.
  • That we can simply get there safely tomorrow in this crazy snow!
  • That Mavery will be healed and in my arms quickly.
  • Peace...

And 2 that are not about us

  • Marks brother meets with his surgeon tomorrow in Kansas City about his upcoming brain surgery. Please pray as big decisions are made.
  • My friend Gail is having surgery on her glands out of state.

Pre-Op Appointment



Checking out her bracelet that we were told she can NOT lose and HAS to have tomorrow or we are in trouble! ;-) She is AB+ blood, thought that was interesting.




Showing the nurse ALL her owies and believe me, she thinks she has a ton! Especially as the nurse was giving her a bandaide for EVERY owie!



Watching that needle closely, the smile faded very fast.


Getting a bath tonight with special stinky soap! She smells like the hospital already!




Clean that booty!




She loved the stinky soap!

Cute Sweet Jammies from Amber, thanks!
You are a dream come true Mavery Raye!
She has just recently attached herself to these bears, we must kiss them goodnight!
No idea what her morning holds.

I may break this into a few posts, but wanted to give you a recap of our day.

  • We have snow, for the first time this year. So we slid our way to the hospital but arrived safely.
  • Mavery did REALLY well for all her appointments. Lifted her shirt as soon as a doctor came near. They did not do an echo, just a chest xray and she was so funny for it she SMILED at the camera! :-)
  • Talked with the surgeon who walked us through what he would be doing. Which is basically he is not sure all they will be doing. He said he is not sure her original diagnosis of TOF is correct. Interesting. Not that it matters. We know they will repair the aneurysm and fix the left artery. Not with a valve though. Long story and I am to tired to get technical. They will also be looking at the right artery because he thinks it is questionable.
  • She will be on heart/lung bypass machine.
  • But they should not have to make her heart stop beating. Glad to know that.
  • She will have a breathing tube that could come out in recovery, or could be there a a few days.
  • The surgery will last 5 hours. 1 hour to get her to sleep, one hour to cut through the chest. Sigh.
  • Our last stop was in anaesthesia. They said they had heard rumors of her and that she might need an extra cocktail tomorrow! ;0)
  • They are describing all the lines that will be coming out of her afterwards and I asked them how in the world we were going to keep her from pulling them out! They said they will restrain her if they have to. I already pity any other families that are sleeping near us. Mavery will scream in her carseat when she does not get her way, the ENTIRE car ride of not matter where we are going. She is going to be TICKED off when she wakes up.
  • We asked if this surgery will be it. He said most likely in her 20s she will need a valve replacement. Possibly sooner but he is hopeful not. Said a cath is more likely.
  • We asked what her restrictions will be once home next week and he said don't let her fall on her chest. Oh is that all? Because that is so easy to do w/ a 3 year old who falls down ALOT because she climbs and flips and dives and is crazy! I think I will be thankful if she is back to being clingy to me.
  • They were telling us about the morning and said oh you get the late start. Which had me all giddy because you know I don't like early. So then she hands me the paper with 6:45 written on it. I said this is the late shift? She laughed and said yes, typically it would be at least an hour earlier! So because of the weather we are leaving our house about 5:30.
  • They asked if we had any questions at every stop. (We stopped often with various people) How do your voice the questions that are really strangling your own heart?
  • Ride home was rough, roads were worse. And the snow is still coming down. I can't believe that we have had NO snow and NOW it is here!

A few more thoughts, hope to get them done tonight.


Monday, January 26, 2009

My Recipe Blog

Last post tonight, I have to finish packing for the hospital. Which I do not want to do. Sigh..

I have started a recipe blog to keep track of my favorite recipes and to share them with you! I love to get new recipes, and like to share my own. I am trying to talk some of my non bloggy friends to at least start a recipe blog so I can get their recipes! HINT HINT! I have not posted a ton on it yet, and have not taken time to add any photos, but, I did try to label the recipes so that you can find something specific if you are looking for freezer meals, crock pot etc.. Hope you might find something new to try, and I know I am happy to have a recipe plan!

Click here to see!

Happy Chinese New Year!




Cranking out the blogs tonight, keep scrolling down! Trying to play catch up...
Typically, we make a huge deal out of Chinese New Year. Remember, we like to party. But with Maverys surgery, and school starting, I just don't have the energy. So in honor of CNY today we ordered in Chinese. The kids could not believe I was not even willing to go out! Hopefully later next month we can RE celebrate chinese new year and at least put their silks on them and go for dinner. We will miss not going to the big parties and watching the dragon dance. But to be honest, taking the little girls to that event sounded miserable to me. There is always next year and surely by then they will be calmer & easier. Surely? Wanted to share this cute conversation tonight.


2 of the children do not like chinese food. They like the buffet because they can eat the chicken nuggets and fruit. But other than that, they turn their nose up. So being the nice mom I am, I offered hot dogs to complement our dinner. (yes i feed my children hot dogs. And McDonalds. We survive here. )


Sage: I want a hot dog too.

Malaine: Sage, you are Chinese, you have to eat the Chinese food!
Sage: Oh, ok.

So serious and so funny! I did give Sage a hot dog, but she and Mavery both LOVE Chinese food and gobble up anything you put in front of them. So nice to have kids that will eat whatever I give them.
Happy Year of the Ox. Makenna is an ox so I guess this is her lucky year!

Happy Birthday Esther!








Just want to give a shout out to my sweet friend Esther as she celebrates her birthday today! I hope that you are VERY blessed this year as we are blessed to know you! Sage & Mavery want you to come back over so they can "brush you hair Estha"! ;0) We are sorry we sent you a card with butterflies on it. Since you don't like butterfly's. Who doesn't like butterflies? Oh well, we love you anyways! Hope it was a Happy Day! ;0)

Glory Update!

My mom got to hug on Glory this weekend! Yes, she is back in the states and at school! My mom said she looked really good, but the chemo has caused alot of really bad things. (major hearing and vision loss)However, she is here and surrounded by friends and for that I am thankful. I still have not been able to get details on what will be going on with her treatments. I do appreciate those of you who have let me know if you know someone in that area that might be able to help. And especially your prayers. I will keep you posted as I know more, but wanted to let you know that she is at least back in the states at school. What a praise!

Want to Shred?


Remember, I am not going to diet this year. But so far, I am doing so far the opposite that I am in trouble. BIG trouble. Big as in getting bigger by the brownies. And anything else that sounds better than thinking about heart surgery. My sis in law bought the new Jillian Michaels work out and since I am a fan, and was ordering some things on amazon, went ahead and bought it. We are faithful watchers of the Biggest Loser. As my sweet friend insinuated, I probably watch it to feel better about myself. ;-) And I do watch it while eating a bowl of cookie dough, or something similar. Sigh.. So the DVD tells me I can lose up to 20 pounds in 30 days, I am all for that! But I was thinking I So need a partner or 3 to MOTIVATE me! Anyone want to partner with me? This of course will not be starting till at least the middle of February for me obviously. Which gives you plenty of time to buy the shred. (less than $10 on amazon) I plan to start mid February and torture myself for 30 days straight. No dieting, however, I am going to try to wean myself off of my diet coke addiction. And my cookie dough, and a few other things. But again, not yet. I need all the chocolate and comfort I can get in the next week! After that, I want Jillians body! ;0) Anyone with me?

Sunday, January 25, 2009

Spotlight Sunday~~Makenna













My oldest, my mini me. Makenna Kaylee. We have gone through alot of adjustments in the last few years as we enter this pre-teen stage of life. But I have to say, things have been better overall I think recently. Sending her off to school has scared me very much for that reason. We were finally at a good point of getting over being pulled out of school. Though I am thinking after the reality of school, she might be quite ready to come back home in the fall!
Makenna is an amazing big sister. She is SOOO creative with the kids and always coming up with an idea to keep them busy. They all adore her and think she is the best. She is a great "screenwriter" and we get to see many plays around here that she writes, and directs.
She is very artistic. She is constantly drawing pictures or making cards. She loves to make gifts to give away.
She is also a good writer. She writes songs, stories and of course the plays. She has piles and piles of things she has written. The trees in this world will be very happy when she can type on a computer instead of writing! ;-)
She loves to sing and is sure that one day she is going to be a singer. Recently she acquired a guitar from her cousin Brett. After surgery we plan to get her to start taking some lessons.
If she is not a singer, she wants to be a vet. She loves all animals, dogs being her favorite. She is always begging us to get another dog.
Makenna has been a lifesaver to me in this past month, sensing when I am very stressed and being willing to help out when needed. I am very thankful for her and miss her much now that she is at school! She has started tagging along with me to get groceries or when I am out running errands and I enjoy her as a daughter and as a friend!

Friday, January 23, 2009

25 Things About Me & Need Help

First, I am trying to figure out how to add something to the blog that lets people sign up to get email updates when I update. I am not sure about the whole following thing because for me, I forget to go to my dashboard and I am more likely to check my emails. Plus half that read my blog are not bloggers. SOOO, if you have any clue what I am talking about and can help me, please do!

I was tagged on facebook to do a list of 25 random things about me. I always think these are kind of fun, kind of therapeutic. Since half of you don't do facebook, thought I would post it here and hopefully get to know some of you better on your own blogs! Or facebook, wherever you choose to hang out. Or if you are like me and and hang out on both, copy it on both! That is just sad, I need a life outside of my computer.


Rules:Once you've been tagged, you are supposed to write a note with 25 random things, facts, habits, or goals about you. At the end, choose 25 people to be tagged. You have to tag the person who tagged you. If I tagged you, it's because I want to know more about you.

1. Daughter of the King and saved by His grace.
.2. Married an amazing man at 19 years old who still spoils me. We celebrate 15 years this year! I am so thankful that he is mine.
3. Always wanted to give birth and adopt and have a large family.
4. I often wonder how many more we will have before we are "done". (we have 5 now)
5. I have never seen a more clear glimpse of my Heavenly Father as I saw in China. Twice.
6. I think that every christian should adopt. Or at least be willing to ask God and listen.
7. I think that this drives my friends crazy and that they obviously do not all agree with me.
8. I have met some of my closest friends online, because of adoption.
9. I have a battle going in with myself about getting healthy. l want to eat right. No I don't really. I want to get in shape. No I don't really. Because I would rather blog and eat chocolate than exercise and eat right.
10. I am still in shock that my newest daughter is having open heart surgery next week and wish I could take her place.
11. I only listen to christian music. It helps me stay focused on God and spend time in worship to Him.
12. I like to cook, but do not like to serve my picky children who do not appreciate my cooking. They just want easy. You know, chicken nuggets, pizza, mac & cheese...
13. I want to be more organized, I know it would help our life be less stressful.
14. I love to read and go from book to book. I will read anything.
15. I am thankful to stay home with my children and look forward to homeschooling again in the fall. I think! ;-)
16. I have a new best friend named Rosie who is a robot that scrubs my tile floors. She is working while I type, isn't that so nice?
17. I miss China and would willingly move there for a season if the Lord called. But if He calls I pray that He calls my entire family to go along.
18. I am very close to my entire extended family.
19. I stay up way to late. And struggle to get up.
20. I love to write and for that reason love my blog, for me. I don't even care if anyone else reads it.
21. Drink a supersize Diet Coke from McDonalds almost every day. Bad, really bad. (see #9)
22. I am a more strict mom than I imagined I would be. I am ok with that.
23. I would like to "get into" photography and sewing. I have a nice camera and a new sewing machine and need to learn to use both.
24. I am thankful for a wonderful Christian Heritage.
25. Every night, after the kids are finally asleep, Mark and I sit w/ our laptops watching reality TV. Biggest Loser is our favorite. Sad? With 5 children it is called RELAXATION!

** I am tagging everyone that reads my blog! Leave me a comment if you do it please.

Thursday, January 22, 2009

Adoption Cards!















In honor of my brother in laws birthday today, thought I would share some of his amazing creativity with you! He lives in Kansas City, Mo and does many jobs. He works at a church full time, but also does photography. I wanted to pass on his information, in case you are interested. He will do cards for you if you need them for adoption, baby, graduation, etc.. And the quality is really good. He is very patient. (you know he is if he does them for me!) And you don't' have to live in KC, you can do everything through email. BUT, if you live close enough to have him do your photos, I promise you will have a fun time! You can check out his website by going here . And if you want a sample, I still have lots of cards left, I can mail you one of ours!
**Pictures are Sage(just some he took at the kids birthday party last summer) along with my niece Tyler and nephew Graham.
Happy Birthday Brett! (as if he reads the blog, doubtful!) ;0)