Today

I really wanted to pull the covers over my head and stay in bed. On the way to church I really thought about dropping Sean and the kids off and coming home. I was just not in the mood to go to church, which usually means that is where I need to be. When they sang one of the songs from Evan's funeral I wanted to run out of the church. But I stayed, and I heard a message that I really really needed to hear.

Carson Evan

Sean's brother and his wife welcomed Carson Evan into the world yesterday. He is named after our Evan and we are so touched by this. I would be lying if I said it did not hurt. I would be lying if I didn't say yesterday was really hard. But the truth is it was hard for them too. It hurt them too. It hurts for everyone involved. I could wallow in my pain or I can decided to be happy that this beautiful baby is happy and healthy and loved. So today I am choosing to be happy for Aaron and Kelly who have this precious baby to hug and love. To be happy for his big sister who doesn't quite know what to think about him yet. To be happy for his grandparents who have another grandson to love. To be happy for Sean and I who have a healthy nephew to spoil. To be happy for G&G who have a new cousin to play with. God has given this family a precious new life and I can celebrate that or fall into a pit of grief and bitterness. And I am choosing to celebrate this precious new life.

March 26, 2009

My due date. I struggled with this in the days after we lost Evan. He was supposed to still be safe and protected in my stomach. He should not have even been born yet, much less have died. My wonderful and amazing husband pointed out what should have been my first thought. "You saw me before I was born. Every day of my life was recorded in your book. Every moment was laid out before a single day had passed. " Psalms 139:16
Everything had happened in God's time. If Evan had not been born when he was, he may have been stillborn and we would not have had those six days. Those six precious days.

CVICU

While we were at UAMS waiting for Evan's arrival a neonatalist (I am sure I butchered the spelling) came in and told us what to expect after Evan's birth. He told us that he would be taken straight to a stabilization room and what all would happen there and then the transport team from Childrens would take him to the NICU at childrens. We told him that we had been told he would go to the CVICU (cardiovascular ICU). He said he would call and find out, but they usually went to NICU. He came back and said the cardiologist wanted him in CVICU. After Evan was born and they suspected the other issues and pretty much told us the heart defect was the least of his worries he told us Evan would be going to the NICU after all. Then he came back and said the cardiologist still wanted him in the CVICU.
This is the part we look back on and see God's hand. I am sure the NICU at childrens is a wonderful place with amazing nurses. They would have to be to do what they do, but the care we received in the CVICU was exactly what Evan needed (and Sean and I for that matter). The first night Evan was there the nurse took care of Evan and Sean. I had to stay in the hospital at UAMS, but Sean went with Evan. Evan had to have labs drawn every 15 minutes and docs were everywhere and from what I understand it was pretty crazy for a while. Sean was sleep deprived and scared. Jennifer took care of both of them. She took care of all of Evan's needs and even brought Sean hot chocolate. Sean thought she hung the moon so she had to have been pretty amazing. She was also there the night we let Evan go and she took care of both of us then.
Haley was his nurse for the next three nights. She was very patient with us while we figured everything out and keep Evan's room quiet and created an enviroment where he could rest and relax. She gave him baths and changed out the tape on his face to make him more comfortable. He was always so relaxed the next morning.
Andrew was one of the day nurses. He was there when we got to hold him the first time. I will always be so grateful for the nurses working around our desire to hold him as much as possible. There would always we a huge mess of tangled wires and lines and the vent was not easy to move around, but they did whatever was necessary for us to be able to hold Evan.
Mekka was our weekend nurse. She was there when we took Evan off the vent and he coded. We will be forever grateful to her for how quickly she worked and got everyone in there. She also bathed him and let me put the lotion on him. Little things like changing his diaper and putting lotion on him just became so precious to us. She also had to answer questions and explain all sorts of new stuff to us after he came off the vent.
Tonja was our weekend night nurse. She had the hard job of trying to balance suctioning him to get the stuff out of his lungs he could not and suctioning too much and causing more swelling. Both nights she was in there he had tough nights and she worked hard to make him comfortable.
Keri was the nurse who was there when I was given the phone number and password to get information. When I called her she answered all of my questions and explained things I didn't even know to ask about. She was there when I got there later that morning and she was there when we let Evan go. She probably spent the most time with Evan, Sean, and I. She patiently answered questions as Sean followed her around and asked them. She took the favorite pictures I have of Evan (the picture above is one of them). She cried with us as we let him go. She went above and beyond and I will be forever grateful to her.
Even though Evan's cardiac issues were never really dealt with after we received the diagnosis of Trisomy 13 the cariologist and the nurses took care of our little man. They showed mercy and compassion. They were truthful with us and we knew what we were getting into, and they were there for us when we needed it. This is when I can look back and see God's hand. The doctor talked about prayer, and Keri told us she was praying for us. At this point prayer was the only thing getting us through this. God made sure we were where we needed to be.

One Week

It has been one week since we let Evan go. While we were preparing to care for Evan one of the docs told us it was a marathon, not a sprint. That is exactly what this week has felt like. It just seems like a lifetime since we held Evan. Evan's name means young fighter, and he was, he fought so hard to stay with us. I just miss him so much.

Thank you to everyone who has sent us messages, brought us meals, prayed for us, sent cards and flowers. It has meant the world to us to know that so many people are praying and care about us. We are just so thankful.

Please pray

for this family http://www.mycharmingkids.net/.
I have followed her story off and on and this precious baby really needs prayers right now, as does his family. Please pray that God will sustain them and comfort them. Please pray that they will find the right meds to heal his heart.

Scentsy

We received the results of Evan's Trisomy 13 test on March 13th. That happens to be Trisomy 13 awareness day. March is actually Trisomy awareness month, but they recognize that day in particular. I just thought it was significant that he was diagnosed on Trisomy awareness day and we would be researching and becoming very familar with Trisomy 13 very quickly. The livingwithtrisomy13.org website has been a huge resource for information and today I found where scentsy was promoting Trisomy awareness so I thought I would pass on the info.

Now through March 24th, 20% to 25% of all product sold from Scentsy Wickless Candles (through the Trisomy Awareness event link) will go directly towards two organizations: Ironman for Kids- Trikes for Trisomy, and Hope for Trisomy 13 and 18.
Help create awareness about Trisomy 13 and 18 and help to support those families that have a child with Trisomy 13 or 18. Many families who have a child newly diagnosed with Trisomy 13 or 18 are told that their child’s condition is “not compatible with life”. For many of these families, this is the first that they have heard about Trisomy 13 or 18 and are not sure where to turn for support or information. Every woman is offered testing prenatally for these 2 conditions but sadly, most of our communities know nothing about it.

Both of these organizations are working hard to raise Trisomy awareness and to provide research and support in connection with Trisomy 13 and 18. Now is a great time to help these organizations out. While ordering, enter the name of a Trisomy child in the notes section and the funds raised from that order will be given in that Child's name! In addition to the funds raised, anyone who orders Scentsy as part of the fundraiser will receive a Trisomy Awareness Packet to continue the growth of awareness about Trisomy.
Orders from the full catalog selection are ONLY available online at
www.scentsy.com/stillwater

Work of God

I just wanted to share some pictures and a verse that I saw on another Trisomy 13 baby's blog. Evan was more than likely blind. He only really opened his eyes once that I saw. An opthamologist told us he would be severly sight impaired, this is very common with Trisomy 13 babies. Anyway, when I saw this verse it just really hit me. I know that Evan had a purpose here and I know that God does not make mistakes so there is a reason for this and this verse just really hit me.
As He went along, He saw a man blind from birth. His disciples asked him "Rabbi, who sinned, this man or his parents, that he was born blind?" "Neither this man or his parents sinned," Jesus said "but this happened so that the work of God might be displayed in his life." John 9:1-3

Services for Evan will be on Friday at 2:00 at Community Bible Church. Visitation will be the hour before the service. Thank you for your prayers, emails, and calls. We can feel the prayers that are surrounding us right now.

At 6:30 on Monday Evan went from his Earthly fathers arms to his Heavenly fathers arms. I don't have words right now. Our hearts are just broken.

Good day, rough night

We had a good day yesterday. He actually did code when they took him off the vent, but he recovered pretty quickly and had a good day. It amazed me how fast the room filled with people and equipment and the doc was here fast. The doc said he wasn't that surprised he did that, because that was what he had done at birth, he just need to be reminded how to do this stuff. He loves laying on his tummy and he wants to face toward the right. Every time they would turn his head he would just turn it back. The APN said that he should not be able to do that yet, but he is a strong little man. Last night was a little rough. He is swollen and has a lot of junk in his airway so it was kinda hard on the nurses. If she suctioned it irritated his airway more, but if she didn't then he had trouble breathing through it. He did have another episode and stopped breathing and turned blue, but his heart rate did not drop so they did not have to do chest compressions and he recovered fairly quickly. He just didn't seem comfortable and was breathing pretty hard. He held my finger and if I moved he let me know he did not like it. This morning he is sounding better and is more comfortable. The resp. therapist just left and said he sounded good and was moving air well. He seems to do well during the day and have trouble at night. I think it is because he is more awake at night and since he is no longer sedated he wants to move around. He uses his hands and push up like he was going to go somewhere. So today I think they are going to up the meds to help him get rid of some fluid and just watch his airway. Right now he needs time to get the swelling down and get used to breathing. Thank you for the continued prayers. I truely believe they are helping Evan.

Evan Almighty

He is breathing on his own! It was not as smooth as we would have liked, but he is breathing like a champ now! He is laying on his tummy to kind of help his breathing and he loves it. I have never seen him without tape all over his face so it was really nice for us to get to finally see all of his face. Please continue to pray. His numbers are encouraging right now so we would like for them to stay that way. The first picture is from this morning while he was sunbathing to get his biliruben down.

Update on Evan

Please say an extra prayer today. They are supposed to take the vent off today, but he had a rough night so I am not sure they will. He has done well the past two days with the vent at the lowest setting, but he has a hard time at night and last night he was on less medication so he was not sedated as much as usual and he would get mad and hold his breath. He had two episodes when the nurse turned his head, one was bad and the vent had to kick in a little to get him going again and one was just a little fit and he started everything back himself. The doc has not been around yet so I am not sure they will pull the vent today or not. So please pray that if they pull the vent his body will kick in and breath on his own. I think all the tubes are part of the problem with all the frustration he has at night. His biliruben is also up so he is on phototherapy so he has a mask over his eyes now also. He did get a nice bath yesterday and a new outfit on. That always calms him. We also had visitors. Grandma and Grandpa brought G&G up and then some friends brought us dinner and some gifts from home and that was so nice. Grace also had a friend come to see the baby. It was good for her to get to show her little brother to her friend. It is wild to think this time last week I was still pregnant and sitting in church, it just seems like a lifetime ago. One of the docs asked Sean the other day how many days it had been since Evan was born and he just said one long day with a few naps here and there. Everything is just running together. Yesterday was another good day, last night was rough, please pray for a good day today.

Good Day

Evan had a good day yesterday. We got to hold him a lot, maybe too much. He was overstimulated last night. He won't open his eyes, they are still pretty swollen, so it is hard to tell if he is awake. Sean was teaching him how to play video games to prepare him for Garrett and Grace coming to visit today and we also put some clothes on him. He did not like getting dressed, but he looked so cute afterwards. The docs have given us some more information about Trisomy 13. The test results we received was a rapid test and we are still waiting for a more indepth results. He can be full Trisomy 13 which means every cell in his body has an extra 13th chromosome, partial trisomy 13 means every cell in his body has a partial 3rd 13th chromosome, or mosaic which means random cells in his body has an extra 13th chromosome. The results of that test will determine how he does so please continue to pray for these test results. Right now we are trying to wean him off the vent. It has been at its lowest setting since yesterday morning. He had a good day, the vent will only take over if he holds his breath or is not breathing enough breaths per minute. He did it all on his own yesterday. Last night after we left he had to be sedated and he relied on the vent a few times. That was probably because of the overstimulation yesterday. He was pretty agitated before we left and he was having to be suctioned quite a bit and he really hates that. The goal right now is to get him off the vent and the lines out of his belly button so he can start eating. Thank you for the prayers, calls and emails. This has all been so overwhelming and the messages have really helped keep us going.

Trisomy 13

We received the results from the rapid genectics test. Evan has Trisomy 13. They are doing a more in depth test that we are still waiting for to determine exactly what is going on with that 13th chromosome, but we have some basic information about Trisomy 13. We do know that he does not have the huge cleft lip and palate that most trisomy 13 babies have and his brain is fine. He does have some major sight issues and while the doc would not come out and say he is blind he did say he would be severly sight impaired. He does have an extra pinky on both hands, but they have no bone and are connected only by a vein. They told us not to be alarmed if they just fell off soon. He also has an extra pinky toe that is attached and probably staying. He hates to have his diaper changed, but loves to be held. The last part has nothing to do with Trisomy, but just makes me happy. We do know that Evan is a gift from God. We may have him for two week, 7 months, or 5 years. We do not know how long God will let us have him here, but we will take each day we have and treat it as a gift from God.

When I woke up yesterday (Thurs.) I was so swollen my eyes would barely open. The docs and nurses had tried to get me to sit down and lay down most of Wed, but I pretty much stood at his bed and did not drink or eat like I should. They figured out how to get me to sit down was to just put a baby in my arms. Actually one of the times I went to pump Sean told the social worker that it would help if I could somehow hold him and she arranged it. I don't know how many hours I sat with Evan in my lap and my feet up yesterday, but I am not nearly as swollen today. Evan really loves to be held also, Sean holds him while I pump. It is a mess of wires and tubes, but they have done whatever we wanted and untangled wires and rearranged things so we could hold our son. He gets pretty uptight and draws his knees up and his shoulders are just stressed but when we hold him he relaxes. It also does my heart good.

Thank you for all the prayers and calls and emails. Talking is really hard right now, but I cannot tell you how much it means to have constant reassurance that he is being prayed for and people care about all of us. If you are sending us messages on facebook we are getting them through email, but we cannot respond because Childrens has blocked facebook. We have not told Grace and Garrett yet. We are meeting with some people from the hospital today who will help us figure out how to explain everything and prepare them for what is going on.

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.