387 hours!

Hello my wonderful family and friends!

I cannot believe it has been 16 days since the birth of our sweet little Annalise Hope! The girl who was only supposed to live for an hour… has now made it for about 387 hours! Talk about a fighter who wants to beat all odds and show those doctors up! 😉

-Side note- for those of you who don’t see my Facebook…here is Annalise’s one-week birthday picture from last week:

 

Now back to business 😛

Last Friday (the 27th) Kevin and I went to Children’s Mercy to meet up with all the different specialists and doctors to talk about this new diagnosis and about the possibility of a shunt. We didn’t necessarily learn anything new about hydrancephaly besides from what we already heard a couple days before. They mainly were discussing the “pros and cons” of doing a shunt and not doing a shunt with her 2 conditions being taken into consideration.

I find it kind of…ironic(?) that every time we meet up with the doctors, they can’t ever explain why things are happening like they are. They can’t give us direct answers because she is surpassing all they thought she could do. They can’t inform us of how things are going to go or what is the best way to treat Annalise from here on out.

The thing is….

We know EXACTLY why things are happening like they are. We know exactly WHO is in charge of Annalise’s life and what she can and cannot do. We have always had our hope in the Lord and knew that His will would be done no matter what. We cannot even begin to explain how grateful we are that God has allowed us so much time with Annalise.

Anyways…we understand that the doctors are here to try and help us. We understand that they are scientists and go by the books. We also understand that they will never be able to tell us how long we will have Annalise in our lives. This is her story…written by God alone. And let me tell you…I think it’s a beautiful story so far. A story of grace, hope, faith, trust, love, healing, compassion…I could go on and on but I will spare you. 🙂

But as of right now…Kevin and I are in the process of making a huge decision. A decision we never thought we would have to make because we weren’t planning on bringing a baby home with us. Ultimately, we have to decide which path of life we want to put Annalise through. Either we don’t put a shunt in and live life like we have been…using palliative care and making her life as comfortable as possible. Or we put her through a risky surgery to help drain the fluid building up in her head to relieve the pressure.

There are so many pros and cons to both paths and we are trying to sort through both options as best as we can. We are trying to REALLY think through both options and what all that means for us as a couple and us as a family.

If we were to go through with the shunt, the only purpose and reason for it, is to drain the fluid so her head will stop growing. (Let me stop right here and explain something so no one is confused. Annalise has TWO diagnoses- hydrancephalus (the brain not fully forming) AND hydrocephalus (extra fluid in the brain). The shunt is only here to help with the hydrocephalus. It does not change the diagnosis of hydrancephalus.) According to the doctors, even though there is some brain tissue now, doing the shunt will not change anything neurologically. The tissue will not form back and the brain will not all of a sudden grow to what it is supposed to be. But at the same time, according to them, draining the fluid will give her “the best chance of developmentally growing”. They say she will never be able to walk, talk, or do anything of that higher cognitive processing stuff though. Doing shunts is very common nowadays and most of the time they work but there is a 30% fail rate. There are so many risks to doing the surgery- including infections, the device failing, clogging, etc. The really bad thing about that is when something happens, you have to go through another surgery to take out the shunt, treat whatever is wrong, then do another surgery to put a new shunt in. So one “little” surgery could turn into 3 or more for the rest of her life. There’s a greater chance that she would have to spend the rest of her life in the hospital instead of at home with us. Do we want to risk that and put our precious little girl through all of that?

On the flip side…not doing the shunt…means we continue what we have been doing…. which is loving her and comforting her as best as we can. She has never shown us any indication of pain so far. This is why making this decision right now is so incredibly hard for us. If she were in pain, then I think the answer would be clearer for us. They did say that if we chose this path though, there are medications that they can give us that would ease her pain. The only real “con” to this way is that her head will continue to grow which could make it difficult to take care of her. If it gets too big or heavy, it may take 2 people just to hold her head up or move her. How uncomfortable would that be for her?

But I’m going to let you in on some news. As I mentioned before, we have a hospice nurse that comes to our home 3 times a week. Each time she comes, she takes Annalise’s vitals and measurements. When we were discharged from the hospital, Annalise’s head measured 46 cm in circumference. Last week when we went to Children’s Mercy for the conference with all the specialists, her head measured at 49.5 cm. Monday when our nurse came, it measured only 49 cm. It is still only measuring at 49 cm. How is it possible that her head has gone down in size? Initial reaction…. They aren’t measuring in the same spot every time. That could be…but I like to think there’s something else going on. 😉 They think maybe the swelling is going somewhere else on the head instead of where they have been measuring. That’s a very real possibility as well but still…

Either way we go, there is no clear indication that one will make her live longer than the other. There are risks and complications to both paths and we have to make the decision of which way is going to be the most comfortable for her. We don’t necessarily want to make the decision based on which one is going to make her live longer anyways…. God already has her days numbered. He is going to see through it no matter which way we choose.

We will always have hope that our girl will continue to fight and prove everyone wrong. We will always believe God can and will, if according to His will, perform a miracle…. more than He already has. During this time, we just ask for continued prayers. We ask that with whatever decision we make, you support and understand that we are doing it for the benefit and comfort of our sweet Annalise.

With all of that said, Annalise is still doing great! Her vitals are still going strong, she’s eating well, and she is gaining weight! On Wednesday, she was up to 8 lbs. even!!!

On Tuesday we celebrated her two-week birthday. I put her in the dress she wore the day she was born and took a picture so we could see the difference just two weeks makes. Just look at the difference!

 

On Wednesday, a photographer from Lee’s Summit (who was so generous in gifting us a newborn session) came to our home and took Annalise’s pictures for us. Here is a small sneak peak of how the morning went!

 

(Thank you SO much Amy (http://www.amyleephoto.net) for doing this- we love them!)

Overall….I guess you could say our life has been crazy good? 😛 We never expected that we would be here at home, 2 weeks after our C-section, with a baby. It has been such a joy experiencing parenthood. It has been such a blessing to enjoy this time with our sweet little one. It has been so sweet to see Kev as a daddy. It has been incredible to see and experience all the support from our family and friends. It has been a blessing to have people so willing to help us out and bring us food. But most importantly, it has been such a treat to see God working in the lives of Annalise, us, and everyone around us. There is nothing greater than seeing God work and being able to glorify Him through EVERY situation. Relying on Him and trusting His will (for not only Annalise’s life but ours as well) has been the only way to go. Without that, we would be in a world of hurt, anger, depression, and so forth. I am SO appreciative of having such a loving, gracious Father to help us through all situations.

We want to thank each and every one of you for the thoughts, prayers, gifts, and food we have received over the last several weeks. We are so, so blessed by it.

i can’t wait to see where our unexpected journey leads us next! I just know God is going to continue to make Annalise’s story even more amazing than it already is!

We love you and can’t wait to share even more with you in the days and weeks to come!

God bless!!!

231 comments

  1. Carrie · March 12, 2015

    What amazing wonderful faithful parents you are! Your daughter is so beautiful. She is such a blessing. Thank you for sharing her amazing journey. The amazing works of God never cease to amaze me, they are not only showing through in Annalise but in you as parents as well. Your family is in my prayers.

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  2. Melissa · March 12, 2015

    THIS is what it is all about!! Good job for celebrating life and happiness instead of dwelling on a diagnosis! My son was born with a very different neurological disorder (Tuberous Sclerosis Complex) but we too, were told he would never walk or talk like a “normal” kid. He has been proving them wrong ever since! You and your beautiful family are in my prayers. Continue to enjoy every minute and celebrate every hour! God has a plan for us all…. Our days are numbered from the day we are born so your beautiful daughter is as “normal” as they come!

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  3. Caryn Slack · March 12, 2015

    This is just the most amazing and inspiring story! I send you and your little beautiful lady the biggest light and love available! She seems like she has such an old soul and strong will as well as an ability to exude positivity! may god continue to defy odds and bless you with many many more miracles!

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  4. Becky · March 12, 2015

    I’m a parent to a miracle baby as well. Your daughter is precious and so amazing! I know The Lord will direct you in what you should do. Keep the faith!

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  5. Brittney Fulp · March 12, 2015

    This just makes my heart swell and my face light up with a smile. I just now came across your story but I feel like I already know you and your heart because of a special connection. The first of which, is that we are sisters in Christ. The second of which is that my family had the incredible blessing of taking in a baby girl with a very rare condition that is sometimes referred to as “Cloverleaf Skull syndrome”. (We live in Guatemala now and my parents have a group home for children with special needs…we are really just a large family.) She came to us at 4 months and we were told that she could pass away at any time and that it was too late for anything to be done for her….that she just needed a family to love on her in the meantime. When we picked her up, we discovered how serious it was…that her head was growing rapidly (hydrocephalus was a part of her diagnose), that her eyes had been removed due to the pressure, that her elbow and knee joints were locked into place, that her ears were not even open, and that she was extremely malnourished with little hope of gaining weight. It broke ours hearts, but we loved her. We loved her so much it hurt! And she was immediately a part of our family. We had four months with our precious Esperanza (the Spanish name for “hope”… The name we gave her due to our hope in Christ. [she was not named when abandoned by her mother.]) She went home to be with her Heavenly Father on January 6th of last year…but those four months that we shared with her remain fully ingrained in my heart.

    I smile as I read your post about Annalise and your love for her, not because what you are experiencing is easy, but because what you are experiencing an incredible blessing…and I don’t think I have to explain my heart behind that statement to you because it sounds like you already know that. ❤ My parents, siblings and I have talked about how much we loved that journey with our precious daughter/sister and how we would have chosen to do it again in a heartbeat…no matter how difficult! Because it let us know and love HER! She is now experiencing life to the fullest, and we have to wait a bit longer, but in the meantime…we get to keep loving on kids in the name of Jesus! I can't think of a greater joy. ❤

    Praying for you, your husband, and your precious Annalise, and I will be watching for updates! Already praising God for guiding you and your husband as you made this big decision! Looking forward to seeing what He has for you and little Annalise next!

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  6. Kaitlyn · March 12, 2015

    That is an amazing story! You 2 are wonderful parents! Your baby girl is beautiful! My brother was also born with hydrocephalus. My parents where told the same as you where about your child not living past a few hrs! Trust in God! The doctors where amazed my brother lived to 23yrs old! My parents did get he shunt placed when he was very young. He did spent a vey long time in the hospital, but was then sent home and lived with us. Sometimes things had gotten rough, but God never makes things to impossible for us to handle! Other problems later on caused his passing.

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  7. Jennifer · March 12, 2015

    Beautiful little girl! My daughter was born with Hydranencephaly in 2009. Enjoy your beautiful girl, they are miracles!

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  8. emma · March 12, 2015

    Hi
    I was diagnosed with hydrocephalus at twelve days old. Im now coming up for my 36th birthday. I have had a shunt fitted since my diagnosis and although i dont have any other brain related condition. Having the surgery has meant i have been able to live the fullest life possible. Im married. Work part time and have three wonderful children. None of which would ever have been possible without my parents taking the chance and letting me have the surgery. All the best. I wish u and your beautiful daughter all the luck in the world. Emma xx

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  9. William mckay · March 12, 2015

    Such a beautiful little soul. Simply beautiful

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  10. wendygordon95 · March 12, 2015

    Bless you all! It is amazing to see God working. Praying for wisdom and peace in the coming days.

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  11. Moira · March 12, 2015

    Oh my goodness, what a sweet baby! I pray that you will be guided in whatever decision you make as her parents. She is adorable, just beautiful xx

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  12. Linda Gaines · March 12, 2015

    Just keep loving that sweet little girl, and let God lead. She is an amazing baby. Not to mention her amazing parents! Love and hugs and prayers to you all, and give sweet Annalise a kiss from everyone here in Chillicothe, Ohio, and know that she has touched many lives everywhere!!!

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  13. Jennifer S. · March 13, 2015

    Friends of ours has a hydrocephalic, amongst other things, child. The doctor advised them to abort. He said she wouldn’t live long, and if she did she would be a vegetable her whole life. They refused. She is now a happy, talking, walking, thinking 7 year old kindergartener. To think, a doctor didn’t think she should be born… they aren’t always right. God goes by HIS plan, not Dr’s or anyone else’s.

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  14. A schumaker · March 13, 2015

    I wish your family the best. Prayers going out My daughter was born with hydracephalus and had her first shunt her first week of birth. The fluid was build up fast. Her head was the size of an adult. Yes she went thru several shunts but the pain of surgery compared to the pressure building up in her head and pushing down on her vent trials was worse. My husband were told the same things you were told. Only we were blessed to have Dr. Carson chief of peds neuro of John Hopkins. When our daughter was born we were told they like to see half of the cortex to say they will be able to function. Our daughter have very little that was visible on catscan. It was explained that the brain is like a sponge the fluid was putting pressure on the brain. Once the pressure was released the brain like a spong will spring up the problem was there would be no way to tell how much brain damage there would be. We took her home gave her all our love all we had to give stimulated her worked her arms and legs to keep her muscle tone. And waited for Ashley to give us all she could. We were ready to accept what ever she could be. We made devices to support her head and at age 1 1/2 she was walking at age 3 her cognitive was at a 5 year old. They told us in the beginning she would need facial survey because the size her head. She did not need the survey. She was beautiful. I know a lot of people are telling you what to do. You have to decide what you think is best. I would think about the pros of the shunt. I would ask if this will help prevent brain damage. I know it did for us. But you have another condition as well. I would contact john Hopkins hospital. Dr Carson is retired. Maybe going to run for president but Johns Hopkins is a good place for special needs. If you would like to talk Let me know. God bless

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  15. Sam · March 13, 2015

    I am praying for your beautiful baby girl and your family…God sees and knows and will lead you in making the right decisions for your little one. After all, He gave her to you! God bless you all!

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  16. Abby · March 13, 2015

    Your daughter is so precious. My sister needed a shunt at birth as well. She spina bifida and scoliosis as well. She went through several shunts until one worked and that lasted until she was 8, then it had to be replaced again. They doctors told us she should never walk (she did with braces) know when she had to use the bathroom (no true, she learned) and because of the last shunt replacement and their failure to replace it immediately, she lost some brain function but went on to work in an enclosed work place. Chrissy lived to be 30 years old and most of those years were amazing for all of us. Good luck to you in whatever path you take. my email is alexchasmom@yahoo.com if you want to write and ask questions.

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  17. lisha23 · March 13, 2015

    Yes beautiful story that touched my while family. You are so right God is in control. And I’m praying for your family. From the Barrows family. From Chillicothe Ohio.

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  18. lisha23 · March 13, 2015

    Reblogged this on Beauty and More and commented:
    Such a beautiful story. Pray for this beautiful family.

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  19. Becky Newman · March 13, 2015

    A number of years ago I read a book by Dr. Walt Larimore, he worked for Focus on the family. In his book he shared about their daughter being born with only part of her brain and how her life progressed. He is a medical Dr. and graduated from Duke. He might be worth trying to get a hold of. Prayers for you and your family

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  20. Morgyn Rogers · March 13, 2015

    My dad had hydrocephalus. He had the shunt put in and has had the same shunt for 30 years. Good luck! Just trying to give some hope.

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  21. June Patenaude · March 13, 2015

    I thought I would write you about our experience 35 years ago. We had a precious baby girl born with hydrocephalus. We were told that she only had a brain 1/3 the size it should be, and that was all scattered. One doctor said she would be a vegetable all her life, and that we should put her away in an institution and forget she was born. Danielle got her first shunt at four days old. That shunt had to be replaced at three weeks. At three months, the shunt was replaced again by a valve that would open more frequently. At the age of six, she had to have the tubing replaced because it had run out of room. Danielle lives a normal life, is very smart, writes poetry, plays musical instruments, is a math whiz, and has even traveled internationally on her own. We are long term foreign missionaries. Her condition never hindered our work on the field. She has never had to have any other surgeries. She still has the same valve they put in when she was three months old. Our Father does wondrously!

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  22. martha · March 13, 2015

    I will be praying for you! ♡

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  23. Erin Shaw · March 13, 2015

    Your daughter is beautiful. Thank you for sharing your story.

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  24. Keturah Kerst, RN · March 13, 2015

    I stumbled across your story on Facebook. As a labor and delivery nurse, I wish EVERY parent faced with knowing their child had a congenital anomaly could read this, and have the same faith. God is SO good to us, and we do NOT know the future. I also have a little Annaliese of my own who is 4, and I love her name. I don’t know you guys, but applaud your willingness to speak out about God’s graciousness to your family. I will be praying to the God of miracles for all of you!

    Liked by 1 person

  25. Rick Hollenbeck · March 13, 2015

    this story makes my heart happy! God bless you and we will continue to pray for even more miracles.

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  26. Kim · March 13, 2015

    She is so sweet. We have a son who we didn’t even know there was going to be issues with when he was born. What I found then and still is that medical professionals don’t ever really know what special children are going to be capable of. When I could get something definitive from a specialist, it has proven to be different then what our son’s reality is 12 years later. They said he wouldn’t walk-he runs. They said he would never eat on his own-he did tonight. Heavenly Father is in charge and will give her what she needs and you both also. I know this.

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  27. Joy · March 13, 2015

    you are an inspiration! May the Master of all creation continue to carry you and your precious girl! Praying for Gods mighty miracles to continue for your family!

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  28. Ashlee · March 13, 2015

    Your story, incredible love and bravery, and infallible faith has touched my heart more than you’ll ever know. I am so amazed by your unwavering positivity and trust in God and his miraculous plans for our lives — your beautiful, sweet baby girl has known such utter love and care in her life, and reached so many through your story. Sending all the positive thoughts and prayers possible to you and your wonderful family and trusting in His great plan!

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  29. Liz · March 13, 2015

    Praying!

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  30. jennifer · March 13, 2015

    Hey, your sweet little girl is so beautiful. My baby has hydrocephalus and needed a shunt. We were also very very hesitant because of all the fear the doctors instilled in us BUT it was the best decision we have made as far as her health is concerned. It gave her a whole new life snd I am so thankful God has blessed us with modern medicine and allowed our sweet daughter an opportunity for the shunt. We thought she was fine and not in any pain iether but within 12 hours of surgery she was a whole new happier and more alert baby. My daughter was also never expected to walk and just started taking her first steps at the age of 2. I will keep you in our prayers. I know the shunt process seems so scary and painful but it wasn’t as bad as we imagined. Our baby only needed Tylenol for pain after the surgery but every baby is different and so is every story. Good luck and God bless.

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  31. Elizabeth Gonzalez · March 13, 2015

    Thanks for sharing your lil miracle with the world .I noticed that just by reading this how much faith you have in the lord.You have inspired me to never loose hope in lifes struggles may god bless your beautiful family.

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  32. devra · March 13, 2015

    My Son was born with similar, he had bi-lateral crainosynastosis along with an underdeveloped eye, low set ears, blocked nasal passages and hydrocephalus. We had his shunt put in at 5 months old and there was never a question in my mind. I really admire your strength. My son Billy did well although obviously delayed for the first 5 years and then we had problems with his shunt which almost took him from us. Since then he has had a whole new shunt and he is thriving at 11 years old. He has been diagnosed with severe autism and is non-verbal but none of that matters as I am just so thankful to have him and be amazed by him several times a day everyday. He is the happiest kid I know and I hope you also get to enjoy all the beautiful gifts your beautiful baby has x

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  33. Brooke Caputo · March 13, 2015

    I love you. I feel so close to you and your family right now. You don’t know me, but we are connected. We are connected through our baby girls and their similar birth defects. I have recently begun blogging about my experience losing my daughter, in 2004. Kate was born with Hydrocephalus, you can read about her here. http://www.doesthiscouchmakemelookfat.com/2015/02/losing-baby-katie-belle-part-one.html?m=1 I have not finished reading all of your blog posts yet, as it is very difficult for me since I personalize the experience you’re going through. Just know that God loves you and we are all here for you, praying and lifting up your family.

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  34. shaquitacombs · March 13, 2015

    Don’t believe anything the doctors say God hast the last word. For almost two years they have been telling me from birth that my son wouldn’t walk or talk nor have a normal life. He has Dandy Walker and shunt and he had open heart surgery. My son walks and talks and has no delays. Early Intervention really helped him. He got PT and when he got strong and had open heart surgery he just never slowed down. Our God is a great God. Sometimes he allows things to happen so he can get the Glory out of your testimony. It made my faith a lot stronger.

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  35. Polly Piepel · March 13, 2015

    God bless Annalise, a beautiful name, I might add, and God bless Mommy and Daddy. Thank you for sharing your story, and how GOD is in control. GOD is the MAKER, GOD is the TAKER. You are his clay…

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  36. Karlie Welch · March 13, 2015

    Beautiful baby girl with beautiful parents. We need more people like you in this world.

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  37. kindael2012 · March 13, 2015

    She is so beautiful, I would be so proud of her if I was her mom. We are all sending prayers out for her ❤

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  38. Amy · March 13, 2015

    My brother is now 34 and was diagnosed at birth with hydrocephalus. They said he would never live past 7 years old. My mom would pray over him every night, asking God for his mercy and strength. One night she was doing her regular prayer ritual and placed her hands on his head and prayed aloud. She said she felt a warm rush pulsing through her hands that she never felt before. When she took him to the doctor the next week, they measured his head and it shrunk half the size. The following week the fluid was completely gone. The doctor had no answer, just amazement. But my mom knows what healed him!

    Stay strong and stick to prayer! Much love to you and your husband and little Annalise!

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  39. Nichole Chandler · March 13, 2015

    How can I get in contact with you? Or could you contact me? I have a baby with the same diagnosis. She was only supposed to live maybe an hour and she is now 1 yr and 3 mos. God bless you. My babies middle name is also Hope.

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  40. Jennifer Zuker · March 13, 2015

    I just read that you are going to get a shunt! Yay!
    Best of luck to your beautiful daughter and your family. It’s great that you have such strong faith to guide you when times are tough, and I will pray that your daughter has a good recovery with no problems from her shunt. I also pray that she will surprise you and her doctors with the things that she is able to do in the future, despite her other condition, hydroancephaly. Annalise is a beautiful name!
    P.S. There is the possibility that she might still be able to get the ETV / CPC, even in the future. I know of one child with spina bifida and hydrocephalus (like my son) who needed 3 shunt revisions, and then after a 4th problem, was able to get the shunt taken out and ETV/CPC. If I were you, I would try to contact Dr. Warf in Boston, even just to inquire about neurosurgeons near you that may know how to do this surgery, or if she could be a candidate.

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  41. Lori Marshall · March 13, 2015

    My daughter was born with the same diagnosis and we were told she probably wouldn’t make it through birth. She blessed us with almost 20 years💗 She was able to do things that we were told she wouldn’t be able to do and the Dr.s said she didn’t” follow the book” with her condition. We were left just going with our gut feeling and the Drs learned that her and God had their own agenda. We also were scared of putting a shunt put in but she was so much more comfortable with it because it reduced the pressure in her head. We had quite a few replacement shunts over the years but it always was a fairly simple procedure… At least in her case. She did not eat well and we went back and forth with Dr.s for 2 years before they all agreed to try it. She did wonderful with the feeding tube and finally started to thrive.
    So I guess I would say to not let Drs pressure you into doing anything you don’t want to do and don’t let them talk you out of anything you think is the right thing to do because they really don’t have all the answers to this complex diagnosis. You just have to trust that you know her better than anyone else and you will be guided to do what is best for her. God Bless you and your beautiful daughter!

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  42. Brigitte · March 14, 2015

    You are such amazing examples of a parents’ love. Enjoy every second you have with Annalise and know that so many are with you and your little girl in spirit.

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  43. Kylie · March 14, 2015

    What a beautiful and amazing family. Your faith shows how much love and good is still a part of this world. I am grateful for your example and your beautiful baby.

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  44. Amy · March 14, 2015

    What a beautiful little girl!!!! My nephew also had hydranemcephaly so me and my family know all to well the stories of perplexed physicians just trying to make stuff up as each day passes. My nephew was only to live a few minutes according to the doctors..he will be 11 in May. An absolute miracle he is. My mom and sister have traveled many of miles to just to find doctors that will help with shunts and feeding tubes. There is a website the found years ago called Rays of sunshine…it is a website dedicated to the few children and their families dealing with hydranencephaly it is an amazing source of support and ideas. I wish you and yours the best and if we can help in anyway please don’t hesitate.

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  45. Amy · March 14, 2015

    What a beautiful little girl!!!! My nephew also has hydranencephaly so me and my family know all to well the stories of perplexed physicians just trying to make stuff up as each day passes. My nephew was only to live a few minutes according to the doctors..he will be 11 in May. An absolute miracle he is. My mom and sister have traveled many of miles just to find doctors that will help with shunts and feeding tubes. There is a website the found years ago called Rays of sunshine…it is a website dedicated to the few children and their families dealing with hydranencephaly it is an amazing source of support and ideas. I wish you and yours the best and if we can help in anyway please don’t hesitate.

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  46. Jordyn Phillips · March 14, 2015

    What a beautiful and precious gift God has given you both to take care of here on earth. My partner was born with hydrocephalus, and spina bifida and the doctors told her parents she wouldn’t live very long and be somewhat of a vegetable. At 3 years old she was reading her mothers Harlequin Romance novels And she made it in the town paper because they wanted to see this really smart girl. Lana has a shunt and has only needed one revision.
    I’m a spiritual person and believe that we have to rely on Gods will to come through, not ours. Will be praying for you all and hope you come to a feeling of peace when you’ve made the decision on what to do. Shunts can be life savers in my opinion. God bless and will be praying for you all. God might have a great big plan for this precious baby girl. It happened with my partner!!
    God bless

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  47. Jen · March 14, 2015

    This is an inspiring story. I thought I’d share w you that in 2006-2007 I was a home health aide and I took care of a young girl that has this exact same condition. She was born in the late 90’s so medicine was way less advanced to what it is now. When she was born the Dr told her parents that she wasn’t going to make it and insinuated they shouldn’t fight. Well they did fight and when I came to know her she was 11-12 years old. She had shunts in her head to drain the fluid. As she grew older she had to go in to have them replaced. She went to school everyday. She knew her name and recognized those closest to her. She had the most beautiful smile. There were many times throughout her life that was hard to accommodate all her needs but the fight never ended. I will be praying for you and your family for an amazing and positive outcome for the best that this situation can be. God bless.

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  48. Debbie · March 14, 2015

    Beautiful story!!

    Like

  49. Carol ODonnell · March 14, 2015

    You are in my prayers. May God continue to show the direction for your family. My prayer is He guides you & shut doors that He knows are not rt for your family. Open the doors you should proceed in. Beautiful baby!! God bless your family.

    Like

  50. thefunhouseuk · March 14, 2015

    Reblogged this on thefunhouseuk and commented:
    Such an amazing story just shows that if you believe anything is possible. We all hope this little girl keeps fighting!

    Like

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