This is a difficult post, so I'm just going to dive right into it. For those of you who may not have heard, our precious baby girl has Spina Bifida (Myelomeningocele). I won't go into too much detail about what that is defined as. Rather, I'll point you to this very descriptive, yet fairly brief & understandable article explaining Spina Bifida. You may have noticed that in the some of the photos she's in the ICU, and that is why.
Essentially it's a birth defect that happened very early in her development, and it will likely result in several challenges to her living a normal life, most specifically that she may not walk without braces/walker/crutches, if at all. In addition to this, she will have to undergo several surgical procedures (performed by a Neurosurgeon). One of these surgeries was Fri (7/25) at 12:30pm. This was to close the opening in her lower back where her spine & nerves were exposed. It's at the L4 vertebrate, which is fairly good news, as the higher the opening, the more severe the situation.
The other surgery will be to put a shunt (tube) that will allow excess cerebrospinal fluid to drain from her brain into the stomach where it can be absorbed. The shunt will be put in (probably) a few days later, depending on how she recovers from the 1st operation.
These are both very serious procedures, and we need all the prayer you can offer. God has been with us on this journey, and is giving us the strength and peace we need to get through it. As we continue to pray for our precious gift, we hope that you will join us.
It's hard for us to call/email/text everyone regularly, so this blog is the best way for us to communicate what's going on. And we love reading your comments, so please keep it up. We'll definitely continue to post updates as soon as we have them.
Love & thanks to all of you.
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34 comments:
I was sitting here 2:30 in the morning responding to client e-mails, project issues, and employee dramas that has been making me quite miserable and upset. When I got your e-mail everything just stopped. I am not going to waste any more energy on these issues and just stop and pray for you and your family, then I am going to bed and when I wake up I am going to pray for you again my friend. My prayers, my heart, and my strength goes out to right now and I cant help but also shed a tear for you all as well. Stay strong my friend.
George Lim
Our thoughts....
-Leftwich
She is a beautiful little girl, Our thoughts and prayers are with you and your family.
I couldn't wait to get to my computer this AM to see new pics :) What a beautiful way to start the day - looking at pictures of a baby angel!
I'm praying with all of my heart for everything to go well. Love you guys...
I'm sending all my love and prayers to your baby girl-if she's half as strong as I know her Daddy is, she'll be just fine! You picked a wonderful name, by the way:)
Alix Sheppard
What a gorgeous baby girl! She’s so lucky to have you both as parents. Give her a big kiss for Rachel and I until we can do it in person. Baby Alex has already received so many of my prayers and now that she has finally graced us with her presence and has put life into perspective my thoughts for her will only strengthen.
God Bless,
Jeremiah
Our little Angel of Hope is precious and beautiful. I am fortunate to be able to be here with the 3 of you at this wonderful time in your life. I love you all very much.God is with you.
Carol
Congratulations on your sweet girl! We just wanted to tell you that there's a group of us here in Michigan that are behind you and are praying for that beautiful baby of yours! Based on my experience, her head looks amazing! We are with you all the way!
What a gorgeous, precious baby girl! Just want you to know as always, you have been in our thoughts and prayers, she is proof that prayers and "HOPE" are so powerful and amazing! We can't wait to see you all. Love you three lots!
Aunt Nadine, Paul and Kylie
Your little girl is just so gorgeous and with an equally beautiful name to match. My thoughts, prayers and heart are with you all.
Taylor
Congratulations on your beautiful baby girl! I'm so excited for the both of you and I will definately keep you all in my thoughts and prayers.
Lyndsey
What a sweetie! I know that with 2 great, loving parents like you, she'll do awesome. Welcome to parenthood and all of it's joys and challenges - it's the best thing that can happen to us.
Many blessings to you all.
Chris Thomas
Congratulations on the beautiful Baby Girl!!! I can't wait to meet her the next time we are able to see each other. Parenthood is always filled with struggles, but Hope has been blessed with two strong, loving, determined parents whose faith in God and courage will carry the family. I know in my heart you will all persevere through these trying times. Until we speak again, please know you are all in my thoughts and heart. All my best wishes.
Augie
Continuing to lift you guys up to our Heavenly Father. You guys are awesome, and it's evident that you have a crowd of people surrounding you with prayer and support.
Praying for the Alex and the doctors today. . .
Josh
You two are, without a doubt, the perfect parents for Alex. Your strength, faith, and courage will help her through these tremendously trying times. Please know that you will, for years and years to come, be in our thoughts and prayers. And not for sympathy, but for admiration, knowing that Alex will be in the best situation possible with you as her parents. Forever know that all three of us love all three of you.
God bless,
Andy, Kerri, and Zoe
Congrats on the beautiful baby girl. Her name is beautiful. Ever since mom told me, I have been praying and keeping you guys in my thoughts. I love you so much. Continue to keep the faith, and all will be well.
Love ya, Your sis. Laveena
hey guys!
my new little cousin is BEAUTIFUUUUL! congratulations! i cant believe nicole is a mommy! what a cute new family.
i am so glad to hear that the surgery went well yesterday. i was studying with my two friends yesterday when i found out about Hope, and my stomach fell to the ground. my friends asked me what was wrong, and i told them that I had a new little cousin, and that she was going to have surgery. one of my friends tried to console me and told me to think positive, because her mom was also born with spina bifuda, and 53 years later, she is living a great life and going strong!
Hope's name says it all.
I love you guys and we are all thinking about you!
Hugs to you and Nicole, and a tiny little hug for Hope!
Andrea
God sent the little angle to you two because He knew that you were the perfect parents for her. He knew that you would love and protect her though any trials she might encounter in life. I love you all and pray for God to take care of you.
Grandma Gordon
I'm so sorry to hear the news but want you to know that you have the love and support of many people to help you through all of this forevermore. Hang in there...
She is BEAUTIFUL! We will be praying for you all. Just know that every day is a new day that brings new "Hope". The love you have for Alex and each other will see you through all obstacles ahead.
God Bless,
Kristine, Brett, Caiden & Reilly!
Hi Guys!
What a wonderful blog! Hope is simply beautiful!! I can't wait to meet her! I can't wait to have Liam and Lydia meet her also! she is so so beautiful! How proud you both must be!
At first I have to tell you when I heard the news I was very upset and sad. I have said many prayers for you guys...and have been thinking and thinking about what you must be going through and you know what I realized? YOU TWO ROCK and how blessed you are that God has choosen you two to look after this beautiful girl!
Im sure that you will have many trials ahead, but remember that God loves you! and that he has blessed you. You must lift up your hearts to him ......
Please know that we are thinking of you and praying for you guys!
Love you lots and lots,
Big Big Hugs!!! (until I can do it in person)
Ann-Colin- Lydia and Liam!
Thank you, Jimmy and Nic, for opening your hearts and sharing your story. Precious Alex and you will constantly be in my prayers. May you all feel Jesus' arms wrapped around you!
In His Grip,
Cindy Berner (Ashley's mom)
Welcome Baby Hope.
Many, many many Blessing to you Alex, Miss Nicole and Mr. Jimmy and your families.
I apologize for not blogging you sooner. It took me by surprise regarding the news. Then, Karly and I cried together. That one of God's precious gifts and truely one of the sweetest couples we know were hurting.
Karly has added you guys to all our prayers (ie. meals, bed, and thinking about).
Isaiah 25:1 Keeps coming to my mind. I am holding on to that. While I pray for all of you.
Please, Let me know if there is anything. We can do. Clean your laundry, toilets.... No, act of servanthood or nurturing would be to big or small for you guys. We love you guys very much and miss you GREATLY.
Much Love and Many Blessings,
Karly, Annamarie and Kal
May His peace and strength be with you. We love you,
Scott, Lauren and Archer
Hi from Tulsa.
Linda and I are praying for you and with you as you go through the different procedures for the care of Alex.
To paraphase a friend of mine, "It's hard to watch your friend go through tough times and feel like you can't do much to alleviate their pain."
Thank you for your postings and letting us be part of your journey.
Two are better than one; because they have a good reward for their labor. For if they fall, the one will lift up his fellow: but woe to him that is alone when he falls; for he has not another to help him up.
Gary & Linda Geppelt
Jimmy and Nicole/I've been reading Alex's blog.It is affermation that you are meant to be Alex's parents and she is blessed to have both of you.I am reminded of an Emily Dickens quote,"Hope is a thing with feathers that perches in the soul and sings the tune without words and never stops at all."xoxo Laurie B.
Dear Jimmy & Nicole,
Just wanted to send a word of encouragement your way. I know a bit about shunts as I now have 2! The first one is exactly like (I believe) that of your precious baby girl. Let us know when/if you are up for call or visit, we can talk more. Lori & I will continue to pray for you.
Blessings,
Daryl & Lori
Congratulations on your sweet angel! Hope Alexandra is so beautiful! Our thoughts and prayers are with you and your family. God bless you both as parents for staying strong through this difficult time...
Always, Stephanie,Gabe,& Gabriel
Jimmy & Nicole;
I'm not very good at notes -- but really want you to know that the 3 Diffees are often in my thoughts & are definitely in my prayers. (I like saying "the 3 Diffees.") Your church family awaits your return and the meeting of Miss Hope Alex.
I love the photo of Nicole holding Alex. Please post one of all 3 of you if you can manage.
I know you have heard/read this a myraid of times, but God is with you and His strength and wisdom and peace is beyond our understanding -- please bathe in it.
Your sister in Christ,
Ruth C.
Jimmy and family,
I heard about your new precious baby at the ADCD board meeting last Sat. We are all praying for you.
My first thought when I heard you were facing some challenges was, "I hope they are not alone in this." I read through your blog this morning and I am so thrilled and inspired by your faith & hope... and the out pouring of support from friends.
Let me know if I can do anything for you guys. I'll continue to pray for y'all.
-Bryce
Nicole & Jimmy,
Congratulations on the birth of your beautiful little angel. I will keep little Alex in my prayers. I told my daughters Jennifer & Amanda about her & they also are praying for her. Jens little boy Zachary was born with a genetic defect called trisomy 18. He is now 3 yrs old & thanks to Gods blessings & everyone who has prayed for him he is doing better then the doctors said he ever would. His progress is truly a miracle. Stay strong & faithful. God has blessed you with a precious angel as He has blessed us with our angel Zachary.
Your Cousin Annette
Nicole and Jimmy, Congratulations on your precious gift from heaven. Justknow Aunt Elaine and Uncle George are praying for you .May God give you the strength needed to care for your baby girl. We belong to a prayer group which meets every Friday morning . Be assured of our prayers. What could more perfect than the name "Hope". Love you ,Aunt Elaine
She is just beautiful!
I know some pretty amazing kids with Spina Bifida -- and I also know a ton of amazing folks at Children's. As you might know, Garth and I are both volunteer ski instructors at Winter Park with the National Sports Center for the Disabled, and the kids we teach are from The Children's Hospital Group. In fact, we've both taught kids with Spina Bif in our day, so in 7 or 8 more years, plan on getting her up skiing. And in the meantime, if you want any names of people to talk to (though I'm sure you've probably got quite a few already), let me know.
Stef Jacobs
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