Tuesday, May 31, 2011

Stationery card

Picture Window Blue Birth Announcement
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Thursday, May 26, 2011


First, yesterday was another terrible day. I know it seems like I have a lot of sucky days, which I do, but I also have a lot of good days. Yesterday sucked bad. Harvey was being a beast of a 20 month old and I was stressed about Edward. He had gotten new casts on Tuesday and I was trying to keep them dry. That lasted a day. He has a bad rub spot on his inner thigh and I was worried he was in pain from the new moisture and constant rubbing. So in effort to relieve him, I undid half of his cast. Not smart. I went down too far and realized that he needed to be recast. Before all this happened, I was in desperate need of coffee so I packed up both kids and went to Starbucks. Did. Not. Go. Well. Then, I had my six week check-up. By the time I got home from my appointment, around 5 p.m., I had a slight body tremor from stress. Thankfully, my friend had brought us a meal. I am talking a legit meal; beginning, middle, end! It was soo good. Thanks Ali!
Today is a good day! I got a little sleep last night and we got Edward's leg recast this morning. So now I have enough in me to talk about the results from our genetics appointment on Monday. Here I go.

Edward has Freeman Sheldon Syndrome. It is a super rare genetic disorder. It is the most severe form of distal arthrogryposis. It is a sporadic mutation of the gene MYH3. (Embryonic myosin heavy chain 3 is the technical name. To simplify, it is the gene that is important for making your muscles tense or contract.) There is a lot they don't know about how this gene mutation may cause other features of FSS. To me, it is utterly bizarre how one tiny random mutation can cause such a mess! FSS kids have facial features that are pretty distinct. When we were at Children's, a geneticists gave one look at Edward and said, "yes, he has Freeman Sheldon Syndrome," with this smirk on his face. (He is one of the main doctors/researchers of FSS and has written papers on the disorder. So he was delighted in seeing another baby with FSS.) The facial features Edward has are a wide nasal bridge, long philtrum, deep-set eyes, prominent forehead, chin dimple, and a small mouth. He also has a high-arched palate, a small tongue, and retrognathia. Again, he has flexed wrists, severe club feet, dislocated hips, short neck, spine issues, and lack of full range of motion in his shoulders. We are blessed that he is feeding with the bottle because feeding can be a huge obstacle for FSS kids. Edward will face a lot of difficulties in therapy and surgery. Most likely, Lord willing, he will be cognitively perfect. Most doctors I have met say that FSS kids are the smartest, most easy going, determined kids that they have ever met. Edward will find a way to do the things he wants to do.
I am excited to see the boy he will become! I just pray that I can be the mom that he needs. I think that is my biggest...I don't know, challenge. I don't know how to be the mom that will shape him to be the man I want/hope he becomes. I hope that makes sense. This whole thing is new to me.

Absolutely the sweetest face I have ever seen!
If anybody has any questions or comments or wants to correct me, please ask! I will try, to the best of my knowledge, answer.

Monday, May 23, 2011

Slippery Slope

This weekend was interesting. I wrote a post on Saturday and didn't post it. It was probably good that I didn't. I was having a terrible crab-fest day. Ultimately, I was feeling sorry for myself and I was angry. It went like this: "I can't believe this is my life," "everybody else's happiness sucks," "this is not fair," "why can't something good happen," "I wish other people could go through this and feel what I have/am feeling," ect. Luckily, I knew it would pass. I drank myself a diet lime coke and ate myself a bowl of ice cream. That seemed to help.
Edward had a difficult weekend too. Last night, for example, it took me two and a half hours to calm him down and get him to sleep. He has these times where he is just soo uncomfortable and nothing I do seems to help him. By the end of the two and a half hours, I was ready to freaking scream.
Today we have a couple of appointments. One is with the geneticist. We will discuss his DNA results. I know what they are going to tell me, but I don't want to hear it. That will make it final. I think I live in an altered reality. This, unfortunately, will force me to deal with the fact that my baby has a syndrome. I hate thinking, writing, or saying that my little baby has a 'syndrome.' I will get over it, I hope. I like my altered reality. It is like I hear all these bad things but they just pass over me, nothing ever really hits me, until it does. Does that make any sense? Maybe it is not an altered reality. Maybe it is something I do to help me get through the days. But, I have soo much to be thankful for. I really, truly do. I love my boys so very much.

My baby in all his casting/splinting glory! (poor thing)
To be super honest, I am having a hard time accepting that God has given me this. It makes me a tiny bit angry. Which is why, I think, I had such a hard day Saturday. I realized that I am a bit angry at God for giving me this. This sounds absolutely terrible and everybody will probably preach at me. I know that God has a plan for my family and especially for Edward. I KNOW this. And I love the Lord with my whole heart and soul. I am feeling guilty for feeling this way. I know Jesus will walk me through these feelings and help me. I just need to be gracious and accept it with thanks. I thought I had done this already but maybe I just need to keep doing it. Everything will be fine and I will be fine. I was just being honest.

Wednesday, May 18, 2011

Elated to frustrated

Edward gave me his first little smile this morning! It was the most precious thing in the world and it melted my heart! I was chatting with him and he gave me a 'look' and he smiled! As much as his face allowed, he smiled! I have been wondering when he would be smiling and he read my mind.

So, we had our orthopedic appointment today to take another x-ray of his arm and to cast his little feet. His arm is healing wonderfully, thankfully. (I could tell of the week we found out about his arm, but I will just tell you that I prayed and told Jesus "please, enough! I can't handle anymore.") I am super confident in our doctors at Children's. Our orthopedic doctor is top-dog and heads up the Arthrogryposis clinic at Children's.  He told me that Edward's clubfeet are pretty severe. I didn't really think that they were, but they are. I was glad to start the casting. (Would have started sooner, but we had to wait out his arm.) I was jazzed to start on the casting...until we got home. My poor baby. He is so uncomfortable. All he wants to do is cross his legs and get back into his position. So needless to say, it is going to be a long night. Well, a long casting process. 

There is so much I could talk about. It is late and my mind is not with me anymore. My body aches me to my bones. It could be mastitis or it could be from sleeping on my couch for the last month. I realized that I have not been able to relax my muscles for who knows how long now. But why should I complain, at least I have all my muscles. Edward doesn't. Doc said that muscles he doesn't have, he won't ever have. I wish I could give him everything he doesn't have. I wish I could fix it. I want to crawl into his body and make it all better. Why can't Disney be real. I could call on my fairy godmother and make my little baby all perfect. Bla such is life.

Sunday, May 15, 2011

Love and Birthday

Edward was put into the NICU. I received updates from the doctors on how he was doing. A couple hours later the transfer team let me hold him for a bit and snapped a Polaroid of us before they took him to Children's. Let me tell you, I held on tightly to that picture of me and my baby that whole night and next day. It is the hardest thing in the world to be separated from your brand new baby. I was recovering while he was miles (well just a couple but still..) away. My husband had bonded with him before I did and I was jealous! Seriously, I got a total of like 20-25 minutes with my new baby who wasn't expected to breathe on his own or even make it. I was broken, but trying to act tough. The extent of the current week hadn't yet hit me...... MRI Monday, met with all our docs who told us our baby might not make it due to underdeveloped lungs, chest, neck ect. Tuesday, suggested we be induced, c-section on Friday)

"Now I Lay Me Down to Sleep" pic
The next day the hospital gave me a three hour pass to go visit my baby at Children's. I was ecstatic. For six months of my pregnancy we knew he had some joint contractures, but I just figured that was it. I was just going to have to deal with his jaw, wrists, and clubfeet. I never allowed myself to think it could be part of a bigger problem/issue. For six months I lived in a state of blissful ignorance. Yes, it is super hard not knowing what you are going to have to deal with come birth, but there is loads of truth in 'ignorance is bliss'! I tell you this so you can understand the extent of emotion that had built up. Adam called me, after I got back to the hospital, and told me that the doctors think he has a syndrome. Ok. Adam hadn't researched it, nor had I. Then, I did. After I saw some visuals and read some information, I curled up on my hospital bed, hid my face and cried like I never had cried before. I was uncontrollable. I couldn't stop. I was hysterical for hours and hours. Nine months of emotion was coming out. I had feelings of "if I had only waited one more month to get pregnant my baby would not have to deal with this," "why me," "why him," "what about Harvey," "this is all my fault," "all because I wanted to be pregnant again sooooo bad," "I just want to crawl in a hole and not come out," bla.  I was heartbroken. I hadn't really bonded with my baby yet. Adam came from Children's to comfort me. And I just cried. Everybody on that hospital floor must of thought something awful had happened. My face was a swollen balloon. Moving on...

being transferred to the main floor at Children's
The next day I was released to be with my baby. He was in the NICU for three days then he was transferred to the floor. All in all, he was in the hospital for about a week. During those days we saw countless doctors. He had x-rays, ultrasounds, an echo, surveys, physical exams, and various other tests done. We learned that he had dislocated hips, stiff shoulders, neck, face, mouth, pretty much his whole body was/is stiff. He needed a feeding tube. He needs splinting, stretching and surgery. Those days were such a blur of doctors and no sleep.

Finally, we were able to come home. Then reality hit. I was talking to my besty, Tyra, and she said, "I am so sorry. Your life has completely changed." It was then that it really hit me. Wait, your right, my life will never be the same and I don't know how to handle that. I still don't. I mean, I knew my life had changed but the gravity of what I was dealing with still hadn't sunk in. But it is not like our/his life will be terrible now, it will just be hard. Edward is the sweetest blessing! And God has it all under control.

P.S. Happy One Month to my sweetest! It has been a hard month for you, broken arm and all. I love you to pieces and couldn't imagine my life without you, just the way you are. You are my warrior and you will make it through everything with a smile on your face. I am so excited to be your mom! I couldn't love you more.

Friday, May 13, 2011

Life Changing

Edward Josiah, 5lbs 10oz, was born April 15th, 2011 at 2:05 p.m.! When the anesthesiologist came out of the "special pediatric room" and told my husband and I that our son was crying, was probably the best moment of my life. We were in shock as we had expected the worst. I started crying and my husband, Adam, went quickly to Edward's side to see if it was true. I, unfortunately, had to stay and get stitched up. Man, I love him sooo much! Where do I begin? So much had lead up to that moment. Now, I am no writer and I don't want to bore you so I will try and leave out as many details as I can.

I wanted nothing more then to be pregnant again! I was in such bliss with my first son that I wanted to experience the perfection all over again. Harvey was born in September and the following July I got pregnant. I was pretty sick for the first 16-18 weeks. During these weeks some ironic things happened.

First, my besty friend, Tyra, told me about her friends who were going through a terrible time. She linked me to their blog and I fell in-love with them and their story affected me to the core. Their son was dealing with a terrible cancer and how they, as parents, were dealing with their sorrow and pain was soo inspiring. They love the Lord and remained close and true to His love even through the death of their son that I was literally blown away. I thought that even though they were going through the worst experience that any parent could ever go through, that Jesus loved them soo much and was going to reward them richly in heaven. To tell you the truth, I wanted Jesus to love me that much that He would entrust me with a hard time. Haha, I even prayed that I could prove my love for Jesus and that I could hold true to His love in a difficult time! Here is their blog if you are interested: http://thematthewsstory.com/

Second, towards the 16-17 week of my pregnancy, around Thanksgiving time, I would wake up super early and read my Bible. One of the early 4:30 a.m. mornings, I was reading in John when all of the sudden the name Edward Josiah popped in my mind. Crazy! I wanted a girl! I looked through the Bible thinking that Jesus wanted me to name my baby a meaningful Bible name. Ok, so I really like Job Issaac. (I still do!) No, it was Edward Josiah that rang so clear in my mind that darn-it, I realized that yes, I was going to have another boy and his name would be Edward Josiah. (Luckily, when I told Adam about what happened and that I felt very strongly that it was not me who gave me the name, that he was cool with the name! I guess if he wasn't, he would have to take it up with Jesus himself!)

Now the pain. My 20 week ultrasound day was upon us! We were sooo excited. It was taking really long and the tech came in and out of the room constantly needing more images. I didn't think anything of it. I was glad because the tech was unable to get a clear shot of our baby's 'goods'. Finally, she made a comment and I realized that something was not right. Adam had left the room because Harvey had had enough. I started bawling, trying to contain myself enough to walk to the elevator and the ride home was brutal. At our appointment with my doctor, she told us that our baby has some problems. He had flexed hands and feet and a small jaw. Her and the radiologist thought that it was probably Trisomy 18. (Trisomy 18's other name is called Edwards syndrome) I had no idea what that was but Adam did and his reaction to 'Edwards syndrome' was so strong that I lost it. I knew it had to be terrible to evoke such a reaction from my husband. So I mourned the potential loss of my baby for a couple days. A couple days later we decided to have an amniocentesis. (Which was a tough decision.) The results came back and thank the Lord it was NOT Trisomy 18! What a glorious day! We were in the clear and our baby was just fine! These findings were nothing!

A month later, December 22nd, a day before we were going to spend Christmas with our family, we had another ultrasound. I was shocked to learn that these anomalies were still present in our baby! WTFreak! In my mind the Lord had healed our baby. I felt like somebody had seriously punched me in the gut, hit me with a bus, pushed me off a cliff. I was angry! I was soooo freaking sad! Bla. We decided to travel and spend time with family to take our mind of off the pain. I barely remember Christmas. I would wake up early at my in-laws and just cry and cry. I barely slept. I was numb. (OMG this is hard to recount.) I am thankful we were occupied though or I would have gone into a depression for sure. I remember that Spartacus Blood and Sand got Adam and I through some hard nights. That is why I am so found of Spartacus! haha

Now, I love Jesus and I know He loves me. Through this all, I feel blessed that He has entrusted me with this struggle. I would MUCH rather have a baby that has problems and loves the Lord then a child who is perfectly healthy and is a beast and does not love Jesus. The Lord has made it abundantly clear that Edward is His and that He has great plans for him. I am not saying that there wasn't times that I haven't asked why? But honestly, why not me?

We kept having ultrasounds every month and at the start of my third trimester I started getting weekly monitoring. Talk about appointments. I should have lived at the hospital.
I had an ultrasound at 34 weeks and was told that he had some swelling.  Doctors wanted to wait it out and have another u/s at 37 weeks. At my appointment at my last ultrasound we were informed that they wanted me to have an mri because they wanted a better read of the swelling. So we scheduled the mri for a Friday but that was cancelled because mri machine broke so we rescheduled it for the following Monday. Then we scheduled a family meeting with all our doctors to discuss our birth plan after the results. Out of the freaking blue they told us that the mri had confirmed that our baby, in addition to everything else, had an underdeveloped chest, lungs, and neck. This was April 12th. They told us that he would most-likely need to be intubated and they needed our permission to do a tracheotomy if need be. They suggested that we go in to be induced the next night. WTFrick! Yet another train blasting over me. By this time I was kinda numb to everything and had the 'such is life' attitude. It really didn't sink in....the doctors were pretty much telling me that our baby might not make it. Due to lack of bed space at Seattle Children's Hospital, we had to wait to go in the next night. So the night of April 14th we went in to be induced. April 15th, I decided that it would make more sense to have a c-section so that the specialists from Children's would be there the SECOND Edward made his appearance.

There you have it. Edward has a form of Arthrogryposis. I love him to pieces and am sooo proud to be his momma! I am emotionally exhausted from experiencing that all over again. And I just skimmed through it! Please, if you have any questions or comments feel free to email or whatever. I will go through his condition tomorrow after I have recovered from today!