Decision Time!

Well family and friends… it is about time to update y’all again! 😉

Last Sunday, we took our little one to her FIRST church service! It was the first time getting out of the house (besides doctor visits). She absolutely LOVED listening to the worship music! And despite our pastor saying he puts babies to sleep when he preaches, she stayed awake and attentive the whole time. 😉

 

Annalise is still doing so well! As of yesterday (the 11th), she is now an 8lb 7oz baby! She is finally gaining weight at a good rate! 🙂 Now, we don’t really know how much of that weight gain is just from her head… BUT! Her cheeks are definitely getting fuller so we know some of it is going to her body. Her vitals are still going strong, lungs still sound clear, and she is still eating and breathing on her own! Annalise still shows no signs of pain or discomfort and is still our super happy, smiley, funny baby!

This week has been such a beautiful week of weather that the last couple days, I have been taking Annalise outside for small amounts of time. The first day we sat out on our patio, she loved listening to the birds chirping. This was her facial expression the entire time we were outside:

 

Yesterday, when we were sitting outside, she was just so bright eyed and awake…. listening to the birds and the kids playing hide and seek. I think she likes being outside! 😉

 

We even took a nap on the couch next to the open window yesterday. And when we woke up, she was so happy. Just look at these “selfies” I got with her! (Don’t mind my “new sleepy mom” look!)

 

So, this past week has been a very good week for us. The only other major thing that happened this past week is that we finally have come to our decision!

So the answer you guys have all been waiting for is finally here!

Annalise Hope is going to Children’s Mercy tomorrow (the 13th) to get an MRI done. This will tell us just how much brain she does have and will allow the doctors to see where in the brain they should put the shunt. Yes, I said it. We are going forth with the surgery and going to have the shunt put in.

Although putting my precious baby girl through a surgery is terrifying and scary, especially when she is not showing us any pain or discomfort, we feel it is the right thing to do to help her live the best life possible.

What is stopping us from stepping out in faith and seeing if God can perform another miracle for our little girl anyways? Who is to say that her brain won’t develop anymore once the fluid is gone?

Annalise has been such a fighter for her first 3 weeks of life anyways that we know that she will continue to be a fighter through brain surgery! Now- I may be a huge nervous wreck on that day but I know that God is right there with us and He will get us through it. He has been the one guiding us so far and He is the one who has been sustaining her. He always will be until the day He calls her home.

We are so blessed that we have already gotten 3 weeks with our Annalise and we have this hope that God will continue to let us have Annalise in our lives for a while yet.

With that said….prayers are appreciated in the next few weeks to come. Like I said earlier, her MRI is tomorrow. Next week we go in for pre-testing and then Monday, the 23rd is her surgery (that is the earliest they could get it in)!

We are so excited to see what the future holds for our special miracle! We know that it may be a long, tough road ahead of us but we know that with God, it will all be okay.

On a final note….

Because Annalise is still with us and we don’t know how long she will be, what complications she may have from the surgery, what disabilities she may end up with, etc., etc., we still have our GoFundMe site up and running (http://www.gofundme.com/hopeforannalise). This is mainly because we want to be able to stay home with her for as long as possible and give her the best life possible.

With all of that said… we are so incredibly blessed by all of the support we have been getting from y’all! We are so thankful for the thoughts, prayers, gifts, donations, and food that has been brought to us! We cannot even begin to explain how grateful we are!

We will continue to keep you updated on our sweet Annalise Hope!

We love y’all!

God bless!

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49 comments

  1. Ashley · March 12, 2015

    Praying for you all in the next few weeks! Your baby girl is beautiful!

    Liked by 1 person

    • Cindy Smith · March 13, 2015

      Beautifu; Baby Girl! May God contiue to bless you and you’re wonderful family. Prayed for you all and left it to God as you have done. God is always in control.

      Liked by 1 person

      • Lisa · March 14, 2015

        My daughter is 15 and has had a shunt for 14 years with many other medical and developmental issues. Get your daughter a programmable shunt. It has saved us from many additional surgeries. The shunt can be reprogrammed with a magnet. The first shunt surgery is the least risky. It is when the malfunction years from not it is more complicated. Sending prayers.

        Like

  2. Lori Mouro · March 12, 2015

    Only God knows the plan he has for your little precious girl. He may have the doctors work a miracle through this surgery. Where ever it takes your family know that God is in control. I pray that she continues to show signs of improvement and has little to no pain.

    Like

  3. Bridget white · March 12, 2015

    Prayers for your precious Annalise and you!

    Like

  4. Jean · March 12, 2015

    Dear Candance,
    You don’t know me personally, but my heart is overflowing for you. The first couple of weeks after the birth of my son were the hardest of my life – and that was with a (thank God!) healthy, uncomplicated baby. God’s grace and his presence are palpable in your writing and I have been praying for your family since I saw your 387 Hour post. I am so glad you have had the unforeseen time with Annalise – to enjoy her, to get to know her, to be together as a family. I am praying that God would give Annalise continued health and awareness – and that she will continue to be pain free. I am praying for peace and joy for you and your husband – and that you will grow closer to God and to each other during this difficult time. I’m praying that the doctors will have wisdom and skill to treat Annalise as best as they are able – and that you will be received with grace, empathy, and understanding.
    -In Christ,
    Jean

    Liked by 1 person

  5. Diana Lynn Montgomery · March 12, 2015

    I am praying for you and baby Annalise Hope. The Lord touch her and giver her a complete healing.

    Like

    • shonna · March 14, 2015

      I just have to say my son had major brain surgery. At seattle children’s. And they did beautifully . god is using this for his glory. To glorify his son

      Like

  6. Megan · March 12, 2015

    I am touched by your incredible love for your baby girl. A reflection of the father heart of God, no doubt. Will pray for your beautiful little one.

    Like

  7. Lisa · March 12, 2015

    I am SO happy you chose the shunt! My daughter has congenital hydrocephalus and was born in August. Before birth we also were misdiagnosed with holoprosencephaly and given the most grim prognosis. Today? I have a happy, social, HEALTHY 6 month old daughter who is meeting many milestones and proving everyone wrong! She had an MRI 3 months after her shunt and you wouldn’t believe the way her brain bounced back! I know hydranencephaly is very different, but I have so much hope for your little girl!!

    Liked by 1 person

  8. halley · March 12, 2015

    She is so beautiful an precious! I love the photos of her discovering the world! Though we have never met, I have her surgery date written on my calendar so my family can be in prayer!!

    Like

  9. Betsy · March 12, 2015

    Praying daily for your little family! Even in your decision about surgery you are listening to God! Thank you for the update!

    Like

  10. jennycarlisle · March 12, 2015

    What an amazing example of praising God in the storm.I love how you enjoy each moment of this journey. God truly has an amazing plan for your family.

    Like

  11. hydrokellyg · March 12, 2015

    I am praying for your sweet baby with her surgery. I have hydrocephalus and my shunt saved my life. My ventricles never went down in size but my brain managed to reroute and recover an amazing amount. It is an amazingly resilient creation. So many, in the hydrocephalus community and outside of the hydrocephalus community are pulling for you!

    Like

  12. Jan McClanahan · March 12, 2015

    So glad to see she has not been in pain. And that you was able to be outside with her. I will continue to pray for all of you. Will look forward to your updates. Hugs

    Like

  13. Angie Conkel · March 12, 2015

    Dear Mom and Dad, God bless you for all you are enduring at this point with your sweet angel Annalise. Not to take away from your story, but I also was born with hydrocephalus (in 1971). I want to assure you that with the technology today and God’s hand on Annalise, the surgery will be a success. The doctors didn’t think I would make it through the night either, and I am now 43 years old (almost 44). Pray about the situation, as I am praying with you that God guide the doctors through this tedious surgery. Annalise is beautiful and I will continue to pray for each of you. God Bless!!

    Like

  14. Amy · March 12, 2015

    My husband is 41 and has hydrocephalus!!!! He was not supposed to make it past a couple of days. He was born 3 months early and weighed 3 pounds. He is proof babies can make it. I am so glad you are doing the shunt my husband has had several in his life so far.

    Like

  15. Tessa Hagan · March 12, 2015

    I am just in awe at how incredibly beautiful she is!! What a sweet, sweet little blessing you have there! You are all in our prayers and thoughts! As parents of a special needs child, and parent who live by faith, daily, your story touches our hearts! Continued prayers and God bless you all! ❤

    Like

  16. Mandy · March 12, 2015

    I am so glad you have decided on surgery! I truly believe it will give her the best chance possible to reach HER full potential. I do not understand, though why they are delaying the surgery so long. As much as her head has grown in the past few days (since your last post) I can’t imagine how uncomfortable she will be by then, and how much pressure will be building up and possibly causing more damage. I urge you to please get her surgery moved up. I am hoping that once they see her MRI tomorrow they will see that this is urgent and do the surgery RIGHT AWAY! I fear that with the rate of growth, she may be in a dire situation by the 23rd…. I would be harassing the neurosurgeon until they agreed to do the surgery sooner. My son does not have hydranencephaly (and who knows, Annalise may not actually have it either, I pray that diagnosis is wrong), but he has hydrocephalus, and I cannot imagine watching his head expand and the pressure build day after day, just waiting for an appointment over 10 days away to get him some help and relief. I know you say she is not in pain, but she cannot be comfortable. I am not here to pass judgement, or make you feel bad, that is not my intent, but PLEASE push to have her surgery moved up. I can’t imagine waiting that long. I will continue to pray for little Annalise.

    Liked by 1 person

  17. Laurel · March 12, 2015

    I’m so happy about your brave decision. I’m a believer in miracles, and feel that this surgery will help her be the best that she can be.

    Like

  18. Mary Schneider · March 12, 2015

    My daughter Gracee has hydranencephaly. The frontal lobes in her brain are Just fluid sacs. She does have a brain stem. She is now 4 years old and doing well. She can see and hear and she tries to imitate noises she is truly a blessing. I am not sure if Annalise has the same diagnosis but I wanted to let you know that I have gotten so much help from a group called Global Hydranencephaly. I would encourage you to check it out. It’s a group of parents that are available 24 hours a day to give prayer support or answer any question you can imagine. If you would like to see pics of my daughter My name is Mary Schneider Somerset WI friend request me on facebook. You are not alone

    Liked by 1 person

  19. Roger Tharpe · March 12, 2015

    CRITICAL PRAYER http://wp.me/p11mpq-YP

    Like

  20. doularae · March 12, 2015

    Such a precious family! Just wanted to encourage you as I have hydrocephalus and a shunt. I am praying for your family and believe we serve a miraculous God who is so in love with your baby! He has good plans for her!

    Like

  21. Becky Pfeiffer · March 12, 2015

    I am the mother of a now almost 14 year old boy, Matthew. He was born with hydrocephalus as well. He has had many shunt surgeries and has come through them all with God’s blessings. He is our miracle. It brightened my day to read you made the decision to have a shunt placed. Love is the best medicine there is and I can tell that you are overflowing with love for your beautiful daughter. The second thing that we believe strengthened our son was music. You and your family will be in my daily prayers to our Heavenly Father. I offer a shoulder to lean on, an ear to listen, and a prayer in my heart.

    Like

  22. Donna West · March 12, 2015

    I am praying for you and your daughter. I know the decision to do surgery is not an easy one on such a little babe, but I wanted to share that when we first got our diagnosis we were told that our daughter had no brain. None. The only reason she was alive was that she had the brain stem, which controls all the autonomic functions. 2 months later we went for her next check up, and her head had grown 5 cms. in those 2 months. Now from the pictures you have posted, it appears her head has grown much more than 5 cms and in much less time. When I took her for that check up and we found out her head had grown so much, my pediatrician sent us straight to the ER and the neurosurgeon did shunt surgery that day. My daughter, who supposedly had no brain, actually does have a brain! They misdiagnosed her. I am so thankful that they placed the shunt and she is now a thriving 4 year old girl. Our neurosurgeon said that if the head is growing there is a brain in there and the pressure needs to be relieved as soon as possible to prevent less damage. I know this is so tough for you as you learn this information and wonder what God has in store for your family. But from one mother of a daughter with hydrocephalus to another – please fight with all you have to have her shunted sooner than later. Many prayers for you and your family.

    Liked by 1 person

  23. Brittany Bush · March 12, 2015

    Although I feel that you already know this, all things are possible with God. But.. My sister also has hydrancephaly and Hydrocephaly, she was never supposed to come home. She turned 4 two weeks ago and has developed (miracuously) a large portion of the “missing brain”. She eats, drinks, crawls, stands, has a personality and has amazed every single person, doctor and surgeon. She also attends a specialized school and knows a small amount of sign language. The doctors can not tell you that it won’t get better, only God can. God bless you on your journey and never give up on tomorrow!

    Like

  24. usolyfan · March 12, 2015

    I am so glad you decided to move forward with the shunt. My daughter is nine and has shunted hydrocephalus. Her was placed at 26 hours old. I am excited to see Annalise ‘ s progress postoperatively.

    Like

  25. ajkelley73 · March 12, 2015

    I just found your story on Facebook. Your sweet baby girl is so precious. My daughter is much older and is under a different circumstance, but she has a shunt. She has had the shunt for almost 2 years now, and have not had any issues with it.
    I pray that all goes well with her surgery. We will continue to pray for your family and that sweet baby girl.

    Like

    • T. Hurley · March 13, 2015

      ajkelley73, I would like to follow on FB, too. What is the name of their FB page?

      Like

  26. Jennie Tracy · March 13, 2015

    Prayers are being sent to your beautiful angel Annalise. Prayers also to her mommy and daddy. I will light a candle for her tomorrow and every day through her recovery from surgery. I truly believe in the power of prayer. Keep your faith in God and he shall watch over your precious angel. Love and prayers to all of you!

    Like

  27. ayietim1 · March 13, 2015

    I want you to know that God is using this precious gift to tell us through you, that we all owe our existence, our earthly journey to Him. We are His to turn in any direction but in which ever direction He turns us to, we will always come out on top, if we submit ourselves to His Will. God will continue to use this miraculous baby to tell us how much He loves us. How long this story will last is only known to Him and He may once again make the impossible to be possible in this case. Be strong. God bless you and your baby.

    Like

  28. Trish · March 13, 2015

    Prayers for all of you!!!

    Like

  29. Em · March 13, 2015

    Have doctors considered an Endoscopic Third Ventriculostomy as opposed to the shunt? Perhaps do some research on this procedure. I know a young boy who was born with spina bifida and hydrocephalus and had this surgery instead. It has been five months and he has been doing wonderfully and progressing so well. Stay strong and my thoughts are with you and your family.

    Like

    • Mandy · March 13, 2015

      Glad that the little boy you
      mentioned is doing so well. Unfortunately, ETV’s are not always an option, and are often unsuccessful in infants and small children and they end up having a shunt placed anyway. My son has a shunt, we were not given the option of an ETV when her was born, but if we had been, I would have opted for the shunt. Sorry for butting in on your comment, but I wanted to mention that….

      Liked by 1 person

  30. Emily · March 13, 2015

    Praying for your sweet family. ❤️

    Like

  31. Ashley · March 13, 2015

    She is so precious! Love her little smile. I will be praying the next few weeks as well 💜

    Like

  32. Emma Jacobi · March 13, 2015

    What an amazing little fighter keep going little princess

    Liked by 1 person

  33. Carin · March 13, 2015

    My son’s situation is similar and I’d recommend the shunt. We wanted our son to be comfortable and with all the extra fluid continually building up in his scull, the shunt was the only way to relieve that. We aren’t sure how long he has (they said he wouldn’t make it to 10) but I’m glad his poor head isn’t as big as it used to be. He’s 18 months and quite delayed both mentally and physically but he’s a happy boy and a blessing to our family.

    Liked by 1 person

  34. Caty · March 13, 2015

    To the courageous Mummy and Daddy of beautiful baby Annalise. I have been searcing the web since waking from a dream at 03:37 this morning and having come across your page realised it is you I have been searching for. I must explain that whilst I was bought up in a Christianfamily with a very devout mother and attended the salvation army up until I was around 17/18 I lost my faith many years ago so I do not really know what prompted me to take any action on my dream but here I am. I have suffered with accute insomnia for a long time and do quite often have vivid dreams but none like this. I was on what appeared to be a SCBU at a hospital and felt as though I was just floating above the room. I was looking down on a beautiful baby girl wrapped in an emboided blanket with the name Annalise in the arms of her mummy in one of those soft upholsterd rocking chairs with daddy sat on the arm with an arm cuddling mummy and a hand softly on babys head. Though a lot of what was being said did not make sense (at least not until I found this site) mummy was softly telling baby that it was time to get the shunt they had told her about and not to worry.all the time this song played
    I’m in his hands, I’m in his hands
    What ‘ere the future holds I’m in his hands
    The days I cannot see have all been planned for me
    His way is best you see
    I’m in his hands.

    I heard a voice say give them this hope they need it now over and over and I woke upalthough I had little more than 90 minutes sleep I felt more well rested than I can remember but also compelled to share this dream. Although admittedly feeling a little foolish I typed bits I remembered into Google and after looking through many web pages came across yours. Idont know what it means I don’t know why. I wish I had the means to help your gofundme page rather than just realying a feeling and a song from a dream. I wish you every luck and happiness in the world and know that you will be in the thoughts of someone on a little island in the English Channel. Take care. xx

    Like

  35. Robbi · March 13, 2015

    My daughter has had a shunt since 2004. It has been a blessing to watch her grow without discomfort from her hydrocephalus. I pray your surgery goes well and you begin to see the same positive changes in your already happy little girl. Shunt surgery is performed on every 1 in 1000 people. A very common treatment and i pray you will have peace during this difficult time. God bless.

    Liked by 1 person

  36. Patty Stewart · March 13, 2015

    Lifting you all up in prayer. Our God is GREAT and MIGHTY!! We have all fallen in love with your precious daughter and look forward to following her journey as she bring HONOR and Glory to the LORD!!

    Liked by 1 person

  37. Chelsi Rogers · March 13, 2015

    my son Cohlson was born early, via c section on Fathers Day last June. 6/15/14. At 20 wks we found out about the hydrocephalus, I was told I would miscarry and every other horrible outcome. We declined the option to terminate the pregnancy, I got pregnant while on birth control and after being told since I was 16 I would never have children. We knew it was in His plan. He also had stunted brain growth because of the excessive fluid, we placed the shunt but there was not enough brain matter to “push” the fluid out. The 11 days we spent with him in the NICU were the best 11 days of my life and I don’t regret them one bit even considering the circumstances. He had a very strong heart but could not breathe on his own or maintain body temp, partly because he came 4 wks 5 days early, still weighing in at 7 pounds 7 ounces 21.5 inches long! We made plenty of difficult decisions but we felt led in all of our choices, it takes special parents to be strong advocates for their babies and you guys are doing an awesome job. Such a heart warming story, sending love from our family to yours!

    Like

  38. Allyson Collier · March 13, 2015

    My thoughts and prayers have been with you since meeting your beautiful family! Im absolutely thrilled to see that Annalise has been doing so well. I’ll continue to pray that her surgery will go as smoothly as possible. 🙂

    Like

  39. Alicia Lynch · March 14, 2015

    Continuing in our Prayers. The day my son went into surgery to have his shunt placement was the scariest day of my life. But I felt the many prayers being said for him and us. I love seeing those beautiful pictures of your little girl. It brings back the many memories with our son when he was little.
    Alicia Lynch

    Liked by 1 person

  40. heather · March 14, 2015

    I just want to say I’m praying for your family! My son has l1cam hydrocephalus he had his shunt placed at two days old, they said he would never do anything and thank the lord he is now almost three and he’s the happiest Lil boy I know, he does more all the time! I’ll be praying for your Lil girl and for you!

    Like

  41. Lilly Colclasure · March 15, 2015

    In just the last week Annalise’s story has been viewed over ONE. MILLION. TIMES. Let’s stop and think for a second…if every person that viewed the blog (this week alone) donated $5 (the minimum donation on gofundme), we would have raised $5,000,000.00 for this sweet family. ‪#‎MINDBLOWN‬
    Not that they would ever expect that much, but I’m willing to do anything I can to CONTINUE raising money for Annalise and her family. So tell me, who’s going to donate the first $5??? http://www.gofundme.com/hopeforannalise

    Like

  42. Celeste · March 16, 2015

    Prayers for your family. My daughter had her shunt placed at 2 months and (knock on wood) has had no problems with it at all. She is now 18 months and is the happiest baby I have ever met. She walks, talks and carries on just like any toddler would. Hoping the best for your little girl. I love hearing the updates.

    Like

  43. Jeannie Nichols (Aunt Jeannie) · March 20, 2015

    God bless your precious family! Your Maryland family has been following your story and praying every day.

    Like

  44. Paige · March 21, 2015

    i am 50 years old, married, with three handsome healthy boys. I was born with congenital hydrocephalus. I had other issues as well scoliosis and ear tags. The tags were removed when I was very young. I don’t remember half of the surgeries I have had. I think there were 30. My mom and dad can recall something about each one. Which is the point of this post. I can’t imagine what you’re going through now and what’s to come. Even though your beautiful girl feels pain now, she won’t remember any of it later in life. Bless you for helping your daughter have a “normal” life. Mine did too and I am forever grateful.

    Like

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