Evan Andrew

This is Evan. I have so much that I really should be saying, but I just don't have the words right now. Please pray. Please ask anyone you know to pray. Evan has some sort of genetic problems and we just don't have all the test or information we need right now. We are going to have to make some extremely hard decisions soon and I just don't know how we are going to do this.
We do know this. God does everything for a reason and His hand is in this and He will hold onto us and get us through this.

The Taj Mahal Model

Excuse the color of the photo, my house has really funny lighting, especially at night. Sean and Gracie have worked many many hours on her history project. They even used scientific principles for the lighting to make it glow like it does when the full moon hits it. This model was made with paper and lots of glue and lots of patience. It was worth it though. Even though it was not the pyramids made out of cake, it was the first time someone had used lighting in this project so hopefully that will get her some creative points! Oh, the assignment was to make an ancient structure out of objects from around your house. They used paper, glue, alum. foil for the reflective pool and pipe cleaners and pompoms for the trees and bushes. This is the type of project that makes me very thankful for Sean because I just read the assignment and had no idea, and then she told us she had the Taj Mahal and Sean was full of ideas! They also spent a lot of one on one time over about four weekends building it.

Basketball Pictures and an Update

Here are a few pictures from the games on Saturday. Garrett fell and hurt his knee (skinned it) so he sat on the bench with an ice pack. The first picture of Grace, the ball is actually coming off her face. She went for a steal and the ball went off her nose and into her hands. She kept playing. Her eyes were watering, but she told the coach she was ok and wanted to stay in while she was running down the court. The second shot is another steal that went alot smoother.

We went to UAMS and Childrens on Friday. We received encouraging news. The cardiologist told us the left ventricle has continued to grow at a consistant rate and he thinks our child will only have to have one heart surgery instead of the three. Of course many things can change that, but he seemed really encouraged by what he was seeing.

We also toured the Heart Station at Childrens. We both feel better now that we know the flow of things. We got all of our questions answered and have a contact person with a phone number and email if we have any more. I am also glad I saw the set up of the ICU before it is my child there. It was overwhelming to see the babies with all those machines, but when I looked in one of the pods there was a daddy holding his baby and it really calmed me.

Please continue to keep us in your prayers. We leave for Little Rock in 3 weeks, and the baby should be born in 3 weeks and 1 day. I want as many people praying for this little one as possible. I firmly believe that prayers is helping this baby and keeping me sane right now.

Another post with no pictures

I need to upload pictures soon. Anyway. I had another non stress test on Friday and baby Bum is doing well. My blood pressure was up and I am swelling so I have to go back on Tuesday for a blood pressure check. It is something he is just keeping an eye on. I actually had lost weight and I am not spilling protein in my urine (sorry if tmi) so it makes it not so bad, but they are going to keep an eye on it anyway.

We go back to Little Rock on Friday for the marathon ultrasound session. There is nothing like laying on an uncomfortable ultrasound table with my big belly hanging out with goop all over the place for two, two and a half hours. It is just frustrating because now it seems like they cannot really tell anything for certain and we come out with more questions. We will get to tour the cardiac icu at Childrens this time and I will get to ask some question that have been bugging me. Mainly about nursing the baby. Last time we went the cardiologist told us that the heart is a very greedy organ and we would have to use high calorie formula. I told her we had planned on breast feeding and she said I would more than likely have to pump and add to the breast milk to up the calories. We had planned on not using bottles at all if possible and nursing only so this is another plan that we are changing, but we will do whatever is best for this baby. I am just worried about how all this will work while the baby is in the hospital. I have a feeling that most of my questions will not be answered until we are right in the middle of all this.

Anyway. G and G are in the middle of basketball. They are both doing really well. I have helped coach MG's team the past two years and I really enjoy it. The girls are so sweet, but I have had to sit out more. The girls are afraid of hurting me or the baby, which is really sweet that 10, 11 year old girls think about things like that. They are first in their division and have won some pretty tough games. GW is learning so much. He had never really shown much intrest in playing until this year and while he has yet to take a shot in a game, he has really come a long way defensively. He has stolen the ball and dribbled in games and has even had some fouls called on him. The first part of the season he just sat back and watched so we are really proud of the progress he has made. Oh, and he loves to play "pig" with dad in the driveway so Sean really enjoys that.
Well, that is pretty much it for now. I need to post some basketball pictures soon. Please say a prayer for us on Friday if you think about it.

Not Much Going On

There is not a whole lot to update right now. We have had two non stress tests since the last post and both have been great. The baby is strong and moving around alot. We have 5 weeks and 1 day till I am induced. I am really excited to finally meet this little one, but very nervous. The baby is fine as long as he/she is inside me, but after the birth we will have answers and a plan for helping this baby.

I have been reading some blogs of families going through the same thing. It has helped to see people going through this and coming out the other side with their beautiful babies. It is just getting through this that I am worried about. There are pictures of the tiny babies surrounded by wires and tubes and machines and I am just not sure how I am going to walk into a room and see my baby surrounded by all this stuff and not fall apart. How am I going to sit in a waiting room for 8 hours while they operate on my child. Just please continue to pray for us. It is the only thing we can do right now and to be quite honest I need to feel God's peace. Thank you.

More Baby Fluff

Just some pictures of the pack 'n play/bassinet.
*edited* I am going to be induced on March 10th at UAMS. We found that out the other day. That gives us 7 weeks and 2 days!!

Happy Baby Post

We got the nusery painted the week between Christmas and New Years. Seans parents were here and were a HUGE help in getting things done. The bassinet is set up and waiting in our bedroom and I love it. It is a pretty cream and black toile print. The nursery is a tiffany blue and chocolate brown and I love it. We ordered the crib and there is a nice Amish man in Ohio making it for us now. We are still waiting for wood samples of the stains to pick out a stain, but the crib is a mission style that converts to a toddler bed and a full size bed. The pictures are of Seans parents helping with the nursery. Sean's mom helped clean out the messiest room in my house. It had become a catch all and had all sorts of stuff in there. Then we taped off the lines and Sean and his dad painted. I stayed in another room, but came in to take pictures. Garrett and Barbie were big helps in this process, they loved the plastic on the floor.

We had an ultrasound and nonstress test Friday. The amniotic fluid is fine. It was 11cm and 10 cm is normal. The kidneys measured fine and the baby's bladder was full so all is well from that standpoint. With the nonstress test, they gave Sean toy to play with. Sean talks to the baby every night and the baby will push on his hand and move around. The baby knows daddy. So the test was during the time when the baby is usually asleep so Sean started talking to the baby, and when Sean would talk, the baby's heartrate would go up and the baby started pushing on the monitor strapped to my belly. It was really funny. I was glad that Sean could see how much the baby responds to him. He would talk and the heartrate would go up. He would stop and the heartrate would go back to baseline. This will be a daddy's baby.

He says it so much better

This is a copy of an email Sean sent out. With me you get the emotional venting, but here is pretty much what we found out.

I would like to give you an update on my wife’s pregnancy after our visit to Little Rock last Friday. Although we received confirmation of the initial diagnosis that our child has a double outlet right ventricle (DORV), the rest of the indicators were predominately negative.
Assuming correct interpretation of the size of the right ventricle test, the child has between a 2.28% and 0.13% (z = to -2 to -3) chance of undergoing the patch procedure at two weeks of age.
Fluid was noted around the heart.
Size of one of the veins leading to the lower extremities was dilated.
Amniotic fluid levels were slightly low or requiring monitoring.
The child’s kidneys were enlarged slightly (5mm).
Through continued consultation, it seems that that we are going to rely upon birth to determine the final surgical outcome. Again, Monica and I thank you for your continued thoughts and prayers.

Like I said, he can state facts without the emotional stuff taking over. So pretty much they don't know if we will be able to have the one open heart surgery or the three open heart surgeries. The growth of the left ventricle is so important right now. They just cannot determine if the left ventricle is adequate until they are able to do an echo on the baby without going through me first. Dr. Laws got some more info about the amniotic fluid and he was given a range that really was not that bad. I will have another ultrasound and a nonstress test on Friday to make sure everything is ok from that standpoint.

The baby is growing and moving like crazy. He/She is 3 pounds right now and measuring great as far as growth. That is really a good sign and something I am holding onto. Please keep us in your prayers. It is really all that is holding me together at this point.

Shout or Silent

Our church is doing a new sermon series called Shout or Silent. It seems like I cannot make it through a service without crying anymore and today was really bad.

Friday when we went to Little Rock we saw a different cardiologist, we were not prepared for that and we also saw the doctor that we really were not very impressed with again. The new cardiologist was not a bad thing. She is the cardiologist for some people we know and they love her so Sean was happy to see her just because the other baby has done so well and the family really likes her. She also gave us some news we did not want to hear. They really cannot tell much about the left ventricle. The baby is getting too big to trust what they are seeing through me. It is all about angles. Some images they get look fine, but some the LV looks small. They really have no way to know until the baby is here and they can get images straight from the baby. She knows how to communicate with Sean though. She gave him some Z scores and information that his analytical mind understands, me not so much. Sean had to explain a lot to me after she left.

The other doctor came in and continued with the ultrasound. I had been on the ultrasound table for two hours at this point and Sean had them bringing me water so my bladder was quite full and it is not really convenient to get up and go to the bathroom. Four different people come in and do ultrasounds and my belly is covered in goop and they don't clean me up in between, or give me a towel or really time to clean up. They just keep adding more goop and keep going. So she started measuring things and my amniotic fluid is low. She told me this then started looking at the kidneys. They usually measure around 4mm, this baby's kidneys measured around 4.5 mm but she was not all that concerned. I mean she took a personal cell phone call and argued with someone about how she could not take a call right now while doing all of this so I am figuring she was not too concerned with what was going on. She told me to call Dr. Laws and get in this week so he could monitor the situation. The baby will need a non stress test and I guess more ultrasounds to measure amniotic fluid. I will be calling his office at 8:00 Monday morning because I know he will take care of me and the baby and I know this will concern him and he will find out answers to my questions.

This is where the Shout or Silence comes in. I have not really wanted to talk to anyone since all of this. I sat in the car and cried when we got done Friday because I felt like I walked out with more questions than answers. They did not schedule my induction like I was told and they did not schedule the visit to the cardiac ICU like I was told and I was just to frustrated. Frustrated and angry. I was talking to a friend at Gracie's basketball game yesterday about how frustrated I am and she told me that I am my baby's greatest advocate right now. I care more about this baby's care than anyone right now and I was going to have to stop being nice and do what I had to do to get some answers. She is right. Now is the time to shout. That is why the sermon today hit me so hard. It was about how to deal with someone who you feel has wronged you. While Ed was talking I was figuring out what I was going to do for my baby and I was crying. I will take this step by step and if the first step does not work I will go on to the next step and the next. This baby will get the attention he/she deserves and the care that he/she deserves.

Thank you for your prayers and emails (and taking over my class Michelle) I have really needed them. Please keep praying.

Christmas '08

Well the kids had a blast this Christmas! I think they enjoyed all their gifts, except the coal wrapped in their stocking ( Sean loves to do that). There were plenty of other gifts there to make up for the coal. Hope everyone else had a relaxing holiday!

Merry Christmas!

God Answers Prayers

We prayed that the baby's left ventricle would be functioning, and it is not only functioning, it is a good size with good blood flow. We came back from Little Rock with a different diagnosis. While this diagnosis is not perfect it is so much better than what we thought we were facing. The baby has a Double Outlet Right Ventricle. What this means is the Aorta and the Pulmonary valve are both coming out of the right ventricle. The Aorta is supposed to come out of the left ventricle and send all the newly oxygenated blood throughout the body. There is a hole between the left and right ventricle, but that is ok. They will be able to go in and patch the hole in a way that fixes the hole and allows the Aorta to get the blood from the left ventricle only.

I will still deliver at UAMS, and the baby will be taken straight over to Childrens. Childrens has a pediatric cardiac ICU, not very many children hospitals do. Everything after that depends on how the baby is doing. The baby will have the first (and maybe only) surgery at 1-2 weeks old. If the baby is doing well and strong enough they will patch the heart then. If the baby is not as strong as they would like then they do a temporary patch and do the permanent patch at 4-6 months. The pediatric cardiologist we met with yesterday did say this baby had some things going for him/her. There are no obstructions. They usually see obstructions in the large veins with this diagnosis and that is the biggest concern right now. I will have to go to Little Rock every 4 weeks and have another fetal echo done to make sure there are no obstructions or any other complication.

I was on the ultrasound table for like 2-2.5 hours yesterday and we saw every part of this baby except the gender. We don't want to know if it is a girl or boy, but the baby has made sure we didn't cheat! Every ultrasound the baby has had his/her legs crossed and grabbing and playing with his/her feet! The baby has hidden his/her face most of the time, but yesterday we even got some 4D images. They were measuring everything and looking for any other defects so they even had a shot of the lips and we could see nostrils. So we know there is no cleft palate.

I can't wait to meet this baby. I feel like I already know him/her and the personality he/she will have. Which is weird since I don't even know if it is a He/She (although I REALLY think it is a she).

Anyway, please keep us in your prayers. The big thing now is no obstruction!! And thank you! The calls, hugs, prayers, and emails have kept me going the past week and a half! I will scan and upload the 4D images later, they are so neat.

Rock Stars

I read Monica's last post and it makes me sad. (This is Sean speaking). Now, we can be sad and we can try to stop the world and change outcomes that really aren't in our control or we can prepare our family and leave this situation in God's hands where it belongs. Besides, the title of this blog is 'a blessed life', we know how this is going to end. It's right there in the title. Besides, if it doesn't end how we would have scripted it, we know that God will ultimately work this for the best. It's right there in Carolina's name Carolina Faith (I pre-appologize if you turn out to be Evan instead). So, in the mean time let's not turn to George Michael and talk about 'cause I gotta have faith'. Let's turn to Bachman Turner Overdrive and live a couple of these lyrics:

"If it were as easy as fish'n

You could be a musician

If you could make sounds LOUD (in my families case) or mellow.

Get a second hand guitar

chances are you'll go far,

If you get in with the right bunch of fellows.

People see you having fun

Just a-lyin in the sun.

Tell them that you like it this way.

It's the work we can't avoid,

And we're all self-employed.

We love to work at nothing all day

And I'll be taking care of business every day."

Therefore, dear God thank you for the rock star childern I already have. If you give me the oportunity to have another, I'm sure I'll rock out with that one too. But in the mean time I'll be

"Taken care of business and working overtime.

Work Out!"

This post would be nothing without more pictures, enjoy. (Therefore, Monica, when you catch me doing this please fix the pictures I've posted and add some more.) As always, Monica is the photog. Thanks again--Mama Rock Star.

Faith

Before Sean and I were married we had decided on a girl baby name. Carolina, because he was born in North Carolina and he loves the name. And Faith because as he said, we have Grace, now we need Faith (For by Grace are you saved through Faith, It is a gift from God....). He also likes to say that he will, many times in his life say "Grace and Faith I need you!"
Anyway, when we found out we were finally pregnant we decided not to find out the sex of the baby. We both have felt from the start that it is a girl though. We actually call the baby Carolina and her. We still don't know the sex of the baby, but after another ultasound yesterday we know that this baby will probably have a long road ahead of her (or him).
We currently have the diagnosis of probable Hypoplastic left ventricle and probable overriding Aorta. This basically means that the left ventricle is too small and the aorta is placed wrong. The aorta will actually get blood from the right and left ventricle instead of just the left. This means it will get oxygenated and unoxygenated blood.
This means that instead of delivering my baby 3 miles from my home surrounded by family and friends, I will deliver in Little Rock(2 hours away) surrounded by a surgical team waiting to take my baby to her first surgery.
This is where Faith comes in.
I need faith right now.
Faith that God is all knowing and is in control
Faith that the doctors will take care of this baby and help us do what is best.
Faith that my family will get through this.
Faith that God has my baby safely in his protective arms.
Faith during the times that I fall apart and cannot function for fear of the unknown.
I need Faith.
We go to Little Rock for more tests on Dec 19. Please keep us in your prayers that day. My hope and prayer is that these test will come back normal. God can heal. Sean had a long talk with the baby last night and told her to work on growing that ventricle. She kicked him alot during this talk so maybe she was listening. Next Friday we will be undergoing test and finding out the results and making plans for the future. The future of our baby.
Please pray that God gives us Faith.

This Little Man

Turned 7 last week! Seven! Because of the holidays we did not do a big birthday party for him. He had a friend over for the day Saturday and we went to the movies and out for pizza and then just let them play. He had a blast! He is really into Legos right now. He loves the Batman, Indiana Jones, and Speed Racer sets and he can put them together by himself now. I just can't believe he is seven! It goes by way to fast!

Happy Halloween!

G&G were Batman and Poison Ivy. Sean and MG made her costume themselves. I guess because her costume was G rated people did not connect the whole Poison Ivy and most thought she was Mother Nature, but they were excited! We live in a great neighborhood for trick or treating and we have more candy than we will ever eat now. Several of the neighbors gave them full size candy bars and they don't get to eat full size candy bars that often so they were really happy! They may never come down off the sugar high, but they are really happy!

I am a little dissappointed in myself this year. I love fall. LOVE it. I have barely got anything up in my house, and my mums (I love mums) died this year and I never got any more. My front porch is bare. I just feel like I am never home, and when I am I am just too tired to do anything extra. The dishes get done and the laundry stays within reason (kinda). I need energy! I need to start nesting!

A Little Bit of Everything

This is their new cousin!

This is the face you make when someone kicks your knee instead of the ball. (she was ok)

It has been a while. I am 19 weeks now. It just seems to be flying by! Everything is going well, the baby is the size of a mango now. S/he is 6 inches and 8.5 oz. The baby is proving it will be a soccer player just like G&G. I get kicks and punches alot. I am feeling really great, just tired. I am told this will pass soon!

G&G have been very busy. Soccer is starting to wind down and basketball is starting up. I am helping coach MG's team again this year. The season ends about a month before my due date. Maybe the refs will cut me some slack if I am huge pregnant on the sidelines! Last year, they weren't my biggest fan, but I will admit I got a little mouthy. Something to work on!

Since I can't post without photos...

OK, it posted the photos first. I don't understand blogger sometimes!

There is a baby Bum in my oven

Sean thinks that is a very corny joke, but I like it! After a very long time of trying and seeing just one pink line on many pregnancy test, I am finally pregnant. According to the ultrasound I was 12 weeks on Sunday, by dates I will be 12 weeks on Thursday, but I just can't stand not saying anything anymore!! We told G & G last night and Sean told his family so I am now posting it for everyone to see! Oh, and MG is very excited! GW is ok if it is a boy, if it is a girl he will run. I am not sure where he will run, but he will run. Oh, and if it is a boy he wants to name him Rocks (or Rox, not sure of the spelling) I have no idea where he got this name, but he has wanted a brother named Rocks for a while now. I am sick and I am so tired, but I am loving it!! I had to go off my migrane meds so I have had alot of migranes and the new meds are not as good. Dr. Laws thinks they will start to get better at about 15 weeks, please pray that this is true. And please pray that S/he will be healthy!! I am still very nervous, things have gone very well and for some reason that just makes me more nervous.

First Day in the First Grade

Can you name that Veggie Tale movie??? I was also MG's first day in the 5th grade. She is now in middle school. She changes classes and has a locker (locker decorations are the most important thing about staring school this year!) She is doing very well. I am 3 weeks late posting this and she has done well so far, I can monitor her grades online and she has a study hall to get most of her homework done.
GW is loving his class. He has a wonderful teacher and most of his buddy's are in his class. Not sure if that is a good thing or not yet, but he loves it! I have lots of pictures to post. We had a busy summer. Cute photos from Minn. where we finally got to meet the newest member of the family (7 month old Cora), fastpitch softball, and lake pictures. So I promise I will post again soon!!

What do you do with a possum after you catch one?

My wonderful 73 year old born and raised in the country, but now lives in the middle of the city dad caught a possum yesterday. He actually had a pet possum when he was young. His name was Sammy and Sammy lived in the house. Anyway, yesterday morning there was possum under my dads car and then it went up a tree, so my dad caught it. That was were he stopped the story.

So I asked him what he did with it.

He threw it in the trash.

The trash trucks were coming so he just threw it in the trash. When he put something else in there later he said it just looked up at him. So now my dad thinks there is a happy possum running around the dump. I didn't want to tell him that the crusher thing probably took care of the possum before he even got to the dump, I will just let him think he made the thing happy!

The kids are in Minnesota and I am bored out of my mind. So I will post of pictures that I have taken recently. Gracie in all her mountain biking gear and Garrett swimming. Oh, and Barbie giving Garrett a bath. I really think she thinks he is hers. She gives him a bath every chance she gets. I think every boy needs a Barbie dog!

Just a Quick Post

These were taken after her team placed 2nd at state. She was trying to smile while crying. She played so hard and we are so proud of her, but these pictures are just sad.

Garrett being Garrett.

I am looking forward to a nice relaxing long weekend of swimming and cooking out! I hope everyone has a nice relaxing fourth!