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Thursday, January 29, 2009

Is this really happening!!!!!

WARNING FOREVER LONG: PLUS MANY GRAMMAR ERRORS. BUT I DON"T HAVE TIME TO FIX.
The news of all news::
The story of Baby Tyson., Yesterday we had our first appointment with the perinatologist.. We first had a Level III ultrasound. Which is when I sensed that something was not right.. We then were taken to consult room to meet with the doctor. The doctor an incredible lady then sat down with us and explained that our baby has spina bifida.. There are three levels of spina bifida. Our baby has the worst form myelomeningocele spina bifida. Although for that diagnosis they told us that we had a lot good thing’s going for us. First the hole is very low in spinal column, the sacral region. The lower the better. Second, thus far the baby has no fluid on the brain. Although there is 80-90 %percent chance that fluid will develop. Our hope is that it does not develop. The fluid can cause brain and nerve damage. I was definitely not expecting this and had prepared for something quit different. The reason that they could not find the brain stem lead’s me to the next item. Our baby has Charii I malformation which is caused my spina bifida, the hole pulls the back of brain downward. The Doctor told us that our baby’s brain is mis-shapen. Jared and I are extremely overwhelmed with what this means for us. We need a lot of faith and prayers throughout our pregnancy that fluid won’t form on the brain. Another bonus is so far the babies legs our normal not clubbed or hyper extended which means he will be able to walk. We have an appointment on Monday with spina bifida team at primary’s to discuss more of what is in store for baby Tyson. We do know that he will we wisked away to surgery after delivery.. We still do no know what is in store for baby Tyson until he is born. They are a million things that can happen after he is born and all we can hope for is the best. On Monday we meet with spina bifida team at primary for more information of what to expect. Today we got a little hope. Our doctor called and said we are a candidate for a surgery called enterouterine surgery. It is where they take the baby out of the sac fix the hole, put a shunt In his brain and put him back in the sac, and close the sac> the surgery is extremely dangerous. There are only three centers in the world that do it., Nashville, Philadelphia, and California. Here is a little more about the mom study I am going to be a part of . MOMS is a long-term study which began in early 2003. Two hundred women 18 years of age or older who are carrying babies with spina bifida will be enrolled in the study. They must enroll by their 25th week of pregnancy. Half of the women will be assigned to have prenatal surgery and half to have postnatal surgery. This is a randomized trial meaning that neither the doctors at the MOMS Center nor the women who participate will have a say in whether or not they are assigned to surgery before delivery or surgery after delivery. The prenatal surgery will be done at one of three MOMS Centers between the 19th and 25th week of pregnancy. Women in both groups will deliver their babies at their assigned MOMS Center by C-section around the 37th week of their pregnancy. Women assigned to the prenatal surgery group will stay in lodging near their MOMS Center from the time they are accepted into the study and have the prenatal surgery until they deliver their baby by C-section around the 37th week of their pregnancy. Women assigned to the postnatal surgery group will return home after they are accepted into the study and will be cared for by doctors in their area until they return to the MOMS Center at 37 weeks for delivery by C-section and for postnatal closure of their baby's spina bifida defect by the MOMS team neurosurgeon.
Here are the risks.
Risks of Prenatal Surgery
-Possible Risks to the Mother

• Wound infection after the fetal surgery.
• Intrauterine (in the uterus) infection. If this occurs the baby will need to be delivered right away.
• Amniotic fluid leak. If it occurs, the mother will probably need to be admitted to the hospital to be treated with bed rest and IV (intravenous) fluids. She may need to stay in the hospital until delivery.
• Loss of ability to have more children.
• Significant bleeding during the fetal surgery.
• Side effects from any medications needed before, during, or after surgery. Side effects depend on the specific medications used.
• Complications from general anesthesia. This risk is no higher than for any other surgery requiring general anesthesia.
• Effect on future pregnancies and deliveries. It is recommended that mothers do not labor during future pregnancies and deliver by C-section instead.
• Psychological stress. There are risks of depression in both groups of women. There is the potential for placing a psychological burden on the family because of the demands of the study, including having to stay away from home and the need to travel to the MOMS Center several times.
-Possible Risks to Fetus or Baby

• Further damage to the spinal cord and nerves from the prenatal surgery.
• Prematurity. Fetal surgery can result in early delivery. The earlier the baby is born, the higher the chance that they will have problems associated with prematurity.
• Membrane separation. The fetal surgery may cause the tissues surrounding the baby and amniotic fluid to separate from the uterus causing early delivery or interference with the blood flow to some part of the baby such as an arm or leg.

Is it worth it! It gives me hope and I feel like I should be apart of this group they have a website called spinabifidamoms.com that have some incredible video. I am sure many of you have heard of the famous baby Sam who reach out of the uterus and grabbed the surgeon’s finger. If not you should google sam interuterine surgery. His story is incredible and the surgery helped him. I will definitely have to pray and have a strong feeling that we are doing the best thing for our baby. I am so grateful for the many wonderful people in our lives, I have been overwhelmed with school and all the sad news. I have amazing family, neighbors and friends who have called, sent me flowers brought by gifts and prayed for us. It means the world to us and we are extremely grateful for you. We have some big decisions to make and will fly to one of the three center in a few weeks where we will meet with doctors and find out what part of the study we will be involved in. I have faith that it will work out. WE LOVE YOU ALL!

7 comments:

Tashina said...

Jess, I have been so consumed with thoughts of you, your family, and your baby for the past few weeks. I have been checking your blog constantly waiting for updates. You are always in my prayers. I can't believe how incredibly strong you are to be going through this right now! I'm happy that you at least got some good news, and that you have options. Remember that, if you include the Lord in your decision, then everything will work out as He has planned for your family. Baby Tyson must be so incredibly special to our Heavenly Father to be going through this! And how much the Lord must trust you and Jared to be putting Tyson in your care! Please keep me updated (even if it is just through your blog since I no longer have your phone number), and remember that we are praying for you! Love you!

Steven and Kimberly said...

You and your family are often on my mind and always in my prayers. Good Luck with everything, and please let me know if there is anything at all that I can do.

Bry and Meliss said...

Oh my goodness-your post brought me to tears. I can't imagine what you are possibly having to deal with right now. But one thing is for sure-that baby is super special. The fact that you two are so willing to do everything possible to bring him into the world is incredible. You are such a strong girl-I really look up to that! PLEASE keep us updated, I have been thinking about you so much lately. I understand how difficult it is being in school and being pregnant, I really look up to you for going through everything right now. God bless you guys in these times!

Melissa said...

Jess, I don't even know where to start. I've been so worried but I didn't want to bombard you with phone calls. I'm just heart broken. I jumped right off of your website and researched everything about the surgery and I'm filled with so much hope and this amazing feeling of peace!!. I know Heavenly Father has a plan and you are just the sweetest mommie! Baby Tyson is the luckiest little man to have you. I will be praying for you and your family and we would love to take that little mouse, Chloe, so you guys could go to the Temple. We are so blessed to have you in our lives. You are such a wonderful example to all of us moms. I can't wait to hold that special angel in my arms and welcome him into our little neighborhood! Thank you so much for sharing your story with us and reminding us why we are here on this earth. We love you guys so much and we can't wait to help you in anyway possible!

Jaci said...

I am praying for you daily Jessica. Your strength is incredible. I am a firm believer that Heavenly Father gives us trials we can handle-- wow, look at your courage! Such a little gal, but bravery, love, and, faith are beaming out of you.
Little Tyson is such a special guy already. He has a fan club cheering him on, and praying for him.
You are the mother of the year in my eyes! Hang in there girl. I love you to pieces and pray for angles to watch over the Thomas family daily.
Love, jaci

Erin said...

So glad to here this positive turn. Now you have something to focus on. Your faith and hope totally inspire me. We are hoping and praying with you!

JoDee and Celee said...

Jessica hunny, you and sweet baby Tyson are in our prayers. You are unbeleivable, just in reading this I can feel your faith. Doctor's are amazing! We're so lucky to have their knowledge. Keep your spirits high and take care of yourself. I love you! I hope and pray that you might know without a shadow of doubt which surgery will be best for you and baby Tyson. Were behind you all the way. Thanks so much for the time you took to update us. Keep us posted. I wish I were closer to give you and Chloe a hug.