So lots of stuff has been going on the past several months. I just hadn't had a lot of time to update this blog. Believe me I have been wanting to write. Back in mid June I took pictures for my friends dance show and have been working at getting all 900+ pictures edited. Plus I had all 3 girls home for the Summer which was stressful and busy. September has been crazy busy as well. Kayla started preschool on September 14 and I have been juggling lots of doctors appointments for me and this pregnancy. I have been putting off on writing this blog post regarding my pregnancy and baby boy since late July. We unfortunately got some unexpected and troubling news regarding baby boy on July 29 (17 weeks along). We found out on ultrasound that he has spina bifida. I have been having a hard time taking it all in and understanding why it had to happen since the diagnosis. My heart just hurts that we have to endure another trial and challenge like this in regard to another one of our children. My baby boy will have disabilities, mostly physically. His spine is open approximately at L3 or L4 which means he will have issues with walking in the future. He also has enlarged ventricles in his brain due to the open hole in his back. He will most likely need a shunt after he is born. He will also have to endure surgery to close the hole in his back when he is born. Other than that he is doing good. He is growing well and his other organs look great. I never thought we would get a diagnosis like this when I got pregnant with him. I was just hoping for another healthy baby born close to full term to join our family. I am trying my hardest to keep the faith that all will be ok. I have lots of fears and worries for baby boy and am hoping for the best outcome we can get. I love this sweet picture of his profile.
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| 21 weeks, 5 days ultrasound |
He is a strong fighter already. He moves and kicks me a lot. I really enjoy feeling those movements inside my womb and am soaking it all in as this will be our last baby.
The good news is that I am 28 weeks. We have past that point of when I had the sextuplets (22 weeks, 6 days) and have gotten past the point of viability (24 weeks). I do have extra amniotic fluid and look much further along than I am. I am hoping my uterus will hold out despite the extra fluid and I will make it to 37 weeks. I am getting the weekly progesterone shots to keep my uterus calm and so far those seem to be helping. I have not been put on bedrest and so far the doctors have not talked about that at all so I really am hoping and praying all continues to go well.
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| 27 weeks |
So Rachel and Haley don't seem to notice the pregnancy or understand, but Kayla is very excited to be a big sister and have a little brother.
We are excited to meet him too despite his diagnosis. We are praying all will be well despite the spina bifida. We are relying on the Lord to help us through this unexpected trial along our journey. We have made it this far and will continue the best we can and continue to endure.
Again sorry for the long break in my blog. I really do want to continue this blog and I will, I just have been having a hard time making the time plus I have been more tired lately due to this pregnancy. Stay tuned for more though! Thanks for thinking of us!
Hi Amanda good to hear from you. You have a bunch of readers very willing to pray for you and your baby. I'm sure you're aware that a child with a disability can be a huge blessing, although also hard work. I am sure Kayla will grow up to be a big help, someone who is very accepting of others. Having a sibling with a disability really makes kids into better people, especially as she knows no different. I believe each of your children have been created for a purpose-(Jeremiah 29:11)
ReplyDeleteAlways praying,
E x
Sending our prayers to you, baby boy and your family. We have followed your blog for years silently but felt we should let you all know we are thinking and praying for you. Peace.
ReplyDeletePrayers and much love to you and Thomas. I cannot imagine the grief you're processing right now. Praying for joy and peace for yiu both
ReplyDeleteHello Amanda, I was wondering how the pregnancy was going, so thank you for the update. Your baby boy will be surrounded by the most loving family and whilst there will be challenges you will be given the strength to get through these and receive the blessings of the little one, with love and best wishes xxx
ReplyDeletePrayers for you and your family. I have a favorite blog which is written by a mom who has a son with spina bifuda. You might find it helpful/interesting: wifeytini.com
ReplyDeletehttp://thegreatumbrellaheist.blogspot.com/?m=1
ReplyDeleteThis is another blog I follow. She has identical triplets and one has spina bifida.
I have been reading your blog for years and have never commented before. I am sending prayers to you and your family. You must be so loved by your Heavenly Father to be the mom of so many wonderful special children. I will keep you and your family in my prayers.
ReplyDeleteMelissa
Prayers to you and your son. Check out this website of a friend of mine (also on Facebook). He was recently seen in a national TV commercial for Target playing wheelchair basketball. Nothing holds this kid back.
ReplyDeleteI will be praying as well for your family.
ReplyDeleteHi, I don't know you personally, but enjoy reading your blog. I have a 2nd cousin who was born with spina bifida. She lived to be 52 yrs old, (died of sepsis after battling bladder cancer ) doctors told her mom she wouldn't make it past 2 yrs old. She became a 3rd grade teacher, bought her own house, took care of herself for the most part. She even drove. She was in a wheel chair. Although could walk with braces/ crutches when she was a little girl. One leg had issues. Doctors gave her a choice and she chose a wheel chair so her student would look down on her while sitting, not standing as she wasn't very tall. My point is she was a fun, smart and succesful woman. She lived a great life to the fullest. She traveled, went to concerts etc. She had a bunch of friends. She was ina sewing club and so much more! Praying for yourbaby boy and your family. :)
ReplyDeleteYou should check out the great umbrella heist blog, it is a mother of triplets one who was born with spina bifida. She has overcome many odds and it may be inspiring to see other people living with this disability.
ReplyDeleteWe have been praying for you family since I was first introduced to your blog just after you had the sextuplets. We will be praying for you and your family. This little boy is such a miracle for you and your family. You and your husband must be AMAZING parents for the Lord to send you yet another one of his precious children that may have struggles but will bless you and so many other. All the best and our prayers are with you..
ReplyDeleteHi Amanda, I have followed you since the beginning. I have twins, one of which has Spina Bifida. They are almost 11 now. Veronica's lesion is at L3, L4. She had a shunt placed at 9 days old and has had gross motor delays, but walks some on her own and some with crutches. Dr. Daniel Curry was her first nuerosugeon and is now at Texas Children's MM (Or Spina Bifida) Clinic. He is outstanding!! Good luck! Feel free to contact me! We pray for your family every night!
ReplyDeleteI have following you since the beginning. I have 11 year old twins, one of which has Spina Bifida. Veronica's lesion is at L3, L4. She had a shunt place at 9 days old. She had some physical delays, but walks some without any support and with crutches. Her first neurosurgeon was Dr. Daniel Curry who is now at Texas Children's. You are in VERY good hands with him! We were very sad to see him leave Chicago. We pray for you each night. Stay strong!!
ReplyDeleteyou have come so far with your family, our Heavenly father will continue to bless you just keep your chin up and god bless
ReplyDeleteAmanda and Thomas, I'm sorry to hear about the spina bifida, but he will be part of a great family. I'm sure he will exceed all expectations and will surprise you every day. You will be amazed with what he will be able to do and how much progress he will make. I always pray for, and think about you. All will be well, stay strong.
ReplyDeleteThere is a procedure now for repairing spina bifida while the baby is still in utero. Are you going to have this? I think it has been done in Houston.
ReplyDeleteWe knew about this procedure before we knew our little boy had spina bifida and we did ask about it, but due to my history of incompetent cervix, premature delivery in past pregnancies and my type 1 diabetes, they would not do the fetal surgery.
DeleteThe two of you must be some of God's most special people, to be entrusted with those very special little ones. We have a young man in my home town who was born with a really bad case of spina bifida. He has taken college classes, drives a specially equipped auto, sings in a youth choir, walks with crutches and served a mission for the LDS church. Will be praying for you and yours. Much love to the bunch of you.
ReplyDeleteI am sorry to hear your little boy will have health issues. I used to work with a lot of kids with spina bifida as a nurse. They were all generally happy independent children with some of the greatest personalities and strength of character. There is so much that can be done for this condition. I know it's not all rosy, but I'm sure you will enjoy your new baby and learn to care for him just as you did your little girls.Hopefully it won't be a severe case- some kids you could barely tell have this; they whiz around in wheelchairs or in braces, know how their shunts work, do bladder caths at school, and just accept and fight..... and have the best parents around. :)
ReplyDeleteCongratulations on your little boy. Who dictates that everybody should be "perfect" in a certain way? He is perfect in his own way, there might be difficulties but there are always difficulties. The gist is that he will be a very lucky little boy to come to your family, to have you and Thomas as parents and Rachel Haley and Kayla as big sisters. The rest will be sorted out and he will do things none of you will believe he is able to. All the best of luck for the remainder of your pregnancy.
ReplyDeleteAnother good blog from a spina bifida family is: http://erniebufflo.com/
ReplyDeleteI am following you since a year now. I admired you. I only want you to know that God give special children to special parents. And you definitely are special. My heart is with you. God bless you all.
ReplyDeleteWow you will have three special needs children. You are blessed. This poem always got me through the difficult times with my special needs child. Thankfully there is so much hope and potential for child born with spina bifida. With all the prayers your son will do fine. God doesn't give us more than we can handle...
ReplyDeleteHEAVEN'S VERY SPECIAL CHILD
A meeting was held quite far from Earth!
It's time again for another birth.
Said the Angels to the LORD above,
This Special Child will need much love.
His progress may be very slow,
Accomplishments he may not show.
And he'll require extra care
From the folks he meets down there.
He may not run or laugh or play,
His thoughts may seem quite far away,
In many ways he won't adapt,
And he'll be known as handicapped.
So let's be careful where he's sent,
We want his life to be content.
Please LORD, find the parents who
Will do a special job for you.
They will not realize right away
The leading role they're asked to play,
But with this child sent from above
Comes stronger faith and richer love.
And soon they'll know the privilege given
In caring for their gift from Heaven.
Their precious charge, so meek and mild,
Is HEAVEN'S VERY SPECIAL CHILD
Amanda, I love your blog and hope you can continue it after you have 4 kids, even if it is only an occasional post and update. I am a parent of a special needs child. There are so many struggles, and I appreciate every small step forward, for they did not come easy. Your strong faith, never-ending strength and determination inspire me to work harder to be a better mother. I thank you for sharing a part of your life in your blog.
ReplyDeleteAmanda, I love your blog and hope you can continue it after Baby Boy. You inspire me to be a better mother to my own special needs child. Many thanks for sharing your life experiences and making the world a better place.
ReplyDeleteHello Amanda, I had a friend in my ward (Maureen Harshman) contact me. She follows your blog and contacted me. I have a daughter that is 18 months with Spina Bifida at an L2 level (no movement past hips) and it doesn't slow her down at all. Reading about you and your husband's journey through parenthood, I can tell you guys will will be amazing parents to your little one. I can honestly say our family has been blessed with Spina Bifida. If I had known this is how life would be, I would have spent so much less time worrying. I'll keep you in my prayers, and please feel free to contact me if you just need someone to talk too, my email is ariel.gilstrap@gmail.com
ReplyDeleteHi Amanda, I've been following your blog for a few years now. Fellow FF mommy =-) I'll be praying for your little boy! My nephew was diagnosed with Spina Bifida at 20 weeks of pregnancy too. My sister and her husband were heartbroken and afraid. We lifted them up with prayer and God was watching over him. He celebrates his 5th birthday on Wed. and miraculously overcame huge obstacles he faced prior and after birth. He walks, runs, and you'd never know he was born with Spina Bifida. He shows no physical effects. I'll be praying for your family!
ReplyDelete