A moment of weakness

Tonight has been kind of a hard night for me. I've sat here and debated on weather or not I should even blog about this but I feel like I should keep some sort of journal for myself. I feel so over whelmed with emotion right now and I don't know what to do with it all. I try to put on a brave face for my family and I try to be strong for everyone, but I have my moments of weakness, and I have moments where I doubt myself. I broke down in tears tonight and I just sat and asked why...why is this happening to us, why did the Lord pick us, are we being punished for something? I sit and wonder what the Lord was thinking when he picked us to be Crue's parents, What does he see in us? Does he really think we can handle this? There are so many unanswered questions that I have. I know it sounds selfish to be this way, but sometimes its hard not to feel this way. I'm not always as strong as people think, but I'm trying...Anyway as I sat here feeling sorry for myself I came across a poem that really touched me. It made me realize that this little boy is going to bless our lives more than we know. I know that it's going to be hard and challenging at times, but he is being sent to us for a reason. I feel that the Lord knows us better than we know ourselves and he obviously sees something in us that we don't. I believe that the Lord is going to be here for us every step of the way and I am so grateful for everything that the He has done for us. I am truly blessed in my life and I need to start focusing more on the good things and not the bad. The poem is called "The Special Mother"

The Special Mother

by Erma Bombeck

Did you ever wonder how mothers of disabled children were chosen?

Somehow I visualize God hovering over the earth selecting his instruments of propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

"This one gets a daughter. The Patron saint will be Cecelia"

"This one gets twins. The Patron saint will be Matthew"

"This one gets a son. The Patron saint give her Gerard. He's used to profanity"

Finally He passes a name to an angel and smiles. "Give her a disabled child".

The angel is curious. "Why this one God? She's so happy."

"Exactly," smiles God. "Could I give a disabled child to a mother who does not know laughter? That would be cruel!"

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of sorrow and despair. Once the shock and resentment wears off, she'll handle it. I watched her today, she has that feeling of self and independence that is so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make him live in her world and that's not going to be easy."

"But Lord, I don't think she even believes in you."

God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness."

The angel gasps - "Selfishness? is that a virtue?"

God nods. "If she can't separate herself from the child occasionally she won't survive. Yes here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'. She will never consider any 'step' ordinary. When her child says "Momma" for the first time she will be present at a miracle and will know it. I will permit her to see clearly the things I see...ignorance, cruelty and prejudice...and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as if she is here by my side."

"And what about her Patron saint?" asks the angel, his pen poised in mid air.

God smiles "A mirror will suffice.

This poem makes me cry every time I read it...I know that there are going to be hard times, but we are still very excited to welcome this little boy into our family and we can't wait to meet him.

NST

About 3 weeks ago I started having non stress tests done. I go in every week so they can monitor Crue's heart rate and make sure everything is going okay. I pretty much go and sit in a lazy boy recliner with monitors hooked to me for about an hour!! I have three monitors that are hooked to me at a time. one monitors his heart rate, one monitors my contractions and the other monitors his movement. It's extremely boring to say the least, but everything looks great so far. They also measure my amniotic fluid every time which also looks good! It's always nice to hear good news :)

Update

Sorry it's been so long since I've updated about crue. We have been to what feels like a million doctors appointments, and met with soooo many people. Things have been a little stressful. Here is what we know as of right now. Crue was diagnosed with Spina Bifida Myelomeningocele, as far as they can tell on ultrasound Crue's lesion is at about L1. This will affect his ability to walk as well as bowel and bladder functions. He may be able to walk with some assistance such as braces or a walker if we're lucky, but he will most likely be in a wheelchair. His feet are also turned inward do to lack of nerve messages in his feet ( also known as clubfeet). He has also developed hydrocephalus which means "fluid on the brain". His fluid is at 1.7 (1.0 is normal) as of a month ago. The reason why he has fluid on his brain is because the brain is being pulled down to the back of his skull do to the spina bifida, which blocks the flow of spinal fluid. He will have a shunt places not long after he is born to drain the fluid. The shunt is surgically placed in the back of his head and a tube is weaved down into his stomach where the excess fluid will be drained. There may also be some learning disabilities do to his condition, but we wont know the extent of that until he's older. He will also have to wear casts on his feet to correct his clubfeet, but this wont happen until he's about 10 weeks or so and he'll also have to wear a foot brace for awhile after his casts are off. We were also told that he might have a coarctation of the aorta in his heart, which means there's a narrow part in the aorta vessel that pumps the blood to his body. We have been sent to have an echo cardiogram twice now and the cardiologist said that she can see where the doctors are concerned but everything else in his heart looks great and not to worry. She said there's a 50/50 chance that he may or may not have it and they wont know for sure until after he is born. If he does develop a coarctation then he will have to have heart surgery shortly after he is born, along with surgery to close his spine and surgery to place the shunt....the list goes on and on. It's so heart breaking to know everything our poor little guy is going to have to go through before he's even a week old :( I pray every day and every night that everything goes perfectly and there are no complications. I went to the doctors yesterday and we talked about the delivery plan. I will deliver c section in about three weeks and we will only be able to see crue for a few seconds before he's taken straight to the NICU. He will be examined and wrapped to protect his back. He will then have surgery within the first 48 hours of his life to close is back, and shortly after he will have a shunt placed. We wont be able to hold him until everything is said and done...which is extremely hard for me to except but I know there's nothing I can do about it...On a happier note crue is growing great and measuring right where he should be. We are very excited (and scared) to meet this special little boy in just 3 short weeks!! Here are a few pics from our last ultrasound.

Pray for baby Crue

On Friday April 6, 2012 our lives changed forever. I was asked to come in for my 3rd ultrasound to check a few things they couldn't see at my 20 week scan. When I went in for my 20 week scan they were unable to see the back of the baby's brain and they reassured me that it was just the way he was laying. They told me everything else on the baby looked great and he was growing healthy. I then went home and told myself everything was fine and not to worry. I returned to the doctor 4 weeks later for a routine check up and everything went great. She went over the ultrasound and told me that he looked very healthy and was growing very well. She then told me to set up another ultrasound appointment to get another look at the part of his brain that they were unable to see. The ultrasound tech told me to come in the next day at 3:30. I returned the next day and waited nervously in the waiting room, telling myself that everything was fine. When I was finally called back I laid back on the table and watched as she scanned over the baby. It didn't take me long to figure out that there was something wrong. The ultrasound tech kept scanning back and forth and didn't say a word for what seemed like a life time. I finally looked at her and asked if there was something wrong. She said she was still unable to see the cerebellum (the back of the baby's brain) and that she didn't think it was because of the way he was laying. My heart dropped...I couldn't think straight, and I felt as if I was in another world. It's hard to explain the way I was feeling...it was a nightmare. I fought back the tears as she scanned over the rest of his body. She told me that there were a few other things that she was seeing but was not able to tell me a lot of information about it. She said that there was a problem with his spine and that it didn't look good, she then told me that it looked like there was a hole in his abdomen and it looked as if there was something wrong with his feet. I didn't know what to think at that point, I just kept asking questions that she said she couldn't answer for me. I felt so angry that she wouldn't tell me more than what she was. She told me that I would have to talk to my doctor about everything and that she was so sorry for the bad news. She told me that the baby could still live but the chances weren't very good. She then took me into another room and told me to wait there so she could call my doctor and let her know what was going on. That's when I completely lost it, I called Joe hysterical and told him that he needed to get to the doctors office right away, things weren't looking good. When he got there he was of course hysterical and I told him everything that was going on. After a few minutes the tech came back and told us that she couldn't get a hold of our doctor but she left a message. She also told us that she made us an appointment with a specialist for Monday afternoon in Salt Lake. She said she would have a doctor call us as soon as she got a hold of her and that we were able to go home. So after spending the longest most horrible Easter weekend we have ever had we finally made it to the specialist. They took another ultrasound and that's when we learned that our little Crue had a sever case of spina bifida. The tech then went over the rest of his little body and said that there was no hole in his abdomen and that he did in deed have a cerebellum. He said the cerebellum was hard to see because it was being pulled down by his spine and was being pressed up against the back of his skull. He then told us that our boy had a very good chance of surviving but he may never be able to walk. We were also told that he had bi lateral clubbed feet (clubbed feet are when the baby's feet are turned inward) but that could be fixed with physical therapy or surgery. We were relieved to know that he would live but devastated to hear that he may never walk. He explained to us all of the possible side effects and everything to expect when having a baby with Spina Bifida. I can't even begin to explain to you the emotion or the heartache that i felt at that moment. He told us that we would deliver the baby C section at 39 weeks and that he would go in for surgery to close the hole in his back within the first 24 hours of his life. He would then have to have surgery to have a shunt put in his brain to drain the extra fluid that builds up from the pressure the spine causes. Our lives have been forever changed and as hard and emotional as this has been, we are trying to keep our heads up and hope for the best. We pray every day and night that Crue will have the best possible out come that he can have. I don't know where I would be without the gospel and the church in my life. As hard as it is to except at times I believe that the lord has sent us this special little boy for a reason and that we are being blessed in so many ways, even if we can't see that right now. One thing that has helped us cope with this is a talk that was given by Ronald A. Rasband at general conference. Here's a link if would like to read it. It was an amazing and uplifting talk. http://www.lds.org/general-conference/2012/04/special-lessons?lang=eng We just want to thank all of our family and friends for all the love and support. We are truly grateful for everything that everyone has done for us. All we ask is that you keep praying for our sweet baby boy.