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!!!

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231 comments

  1. dympna linton · March 14, 2015

    My gorgeous daughter Charlotte was born with dandy walker syndrome and severe hydrocephalus. .Dr’s said she wouldn’t live more than 24-28 hours. .she lived until she was 6 years 8 months and 5 days old. She has 17 shunts and numerous other surgeries. .A miracle everyday until she grew her angel wings 10 years ago. God bless your family now and always xxx

    Liked by 1 person

  2. L · March 14, 2015

    What An amazing daughter you have. I am one of a twin, my brother was born with spinabifida and hydrocephalus. He had an emergency shunt fitted, and was given the last rights twice. The doctors also told my parents that he would never sit up or walk. We are now both in our 30’s, he walks, works and horse rides. The impossible is possible, have faith and let the Lord guide you. Xxx

    Liked by 2 people

  3. Lisa · March 14, 2015

    You have a beautiful daughter! God is good all the time! Praying for you and your family from Arkansas!

    Like

  4. Sharon · March 14, 2015

    Our son Adam was born with hydrocephalus unable to have a shunt fitted he died at six weeks old he would have been 21now, we now have a little grandson named after him. You have a beautiful little girl may god bless you all x

    Like

  5. Are Almon-Kok · March 14, 2015

    I think as parents you are doing an amazing job looking out for and being a voice for Anneliese Hope. I was hoping that you have a Facebook page or a way for anyone to watch and learn from your journey. I would love to (in a small part) be a part of your journey and watch your beautiful daughter grow and to be able to see God work through her. Good Luck and from one mother to another GREAT JOB! Please give her all of mine plus so many others love. I will be praying for her and for the two of the strongest parents I have ever come to read about.

    Like

  6. Louanne kayani · March 15, 2015

    You have a beautiful daughter x god bless her x I just love her cute little feet n hands sooo tiny xx

    Like

  7. Ness · March 15, 2015

    Your daughter is wonderful, and God is glorified in her! The Lord has a special plan for her. God bless you as you continue to trust in Him. Love and prayers.

    Like

  8. Wendy Romaniello · March 15, 2015

    God bless your precious baby girl!

    Like

  9. Pam Burtness · March 15, 2015

    My 32 yr. old daughter acquired hydrocephalus from lack of oxygen & brain hemorrhage shortly after birth. She’s had 5 revisions total in her life. She does not speak and functions between 3 yrs.-7 yrs. She thinks she’s a princess & has always had her Dad wrapped around her finger! It hasn’t been easy but God has used her for the good of others & His glory! We are blessed to have her & to be entrusted by God to raise & care for her! Praying for The Lord’s strength, compassion & mercy for all of you…
    Zeph. 3:17 The LORD your God in your midst,
    The Mighty One, will save;
    He will rejoice over you with gladness,
    He will quiet you with His love,
    He will rejoice over you with singing.”

    Like

  10. carly · March 15, 2015

    I just wanted to check the boxes below so I get notifications in my email. Thanks and God vless. All through the blood of Christ she will be healed!

    Like

  11. Amy Mollallegn · March 15, 2015

    Praise the Lord! Thank you for sharing how our wonderful Lord is blessing you and thank you for your wonderful christ like example! May the Lord continue to bless you in every moment with your beautiful and precious little girl! Xxxxxx psalm 103 xxx

    Like

  12. KIRSTIN payne · March 15, 2015

    My daughter has 2 syndromes, and microcephaley( small head), she doesn’t have a shunt but she doesn’t sit, walk, talk, fed (peg fed into stomache), has complex heart condition, uncontrolled epilepsy, blind the list goes on. But she has her own personality, the happiest girlie who brings a smile to everyone, and I would not change her for anything. Yes, it’s hardworking but she is my love, my life and I would do anything for her. Your daughter is beautiful and I wish, pray for you on your decision whichever u make.xx

    Like

  13. yourhistories · March 15, 2015

    I am not sure where in the world you are, but here in the UK it’s Mothering Sunday today. So – happy Mother’s Day. Love to you all x

    Like

  14. Angela · March 15, 2015

    You have such a beautiful child!!! Thanks for sharing your photos. We live in the same area so if u need anything inbox me. Prayers for your strong beautiful daughter and your family.

    Like

  15. Vickie · March 15, 2015

    I was diagnosed with Hydrocephalus at the age of 16 and had a shunt fitted. I’m now 32 and have been very lucky to have had no complications, it has worked perfectly.
    Your daughter is gorgeous and i wish you all the very best of luck and wishes in whatever you decide to do 😘 xx

    Like

  16. Laura H · March 15, 2015

    She is so beautiful, what an absolutely gorgeous set of photos xx

    Like

  17. Rachel · March 16, 2015

    Hello! Your family is beautiful! My name is Rachel. I was born 3 1/2 months early, at 26 weeks gestation. I developed Hydrocephalus outside the womb. My head was super spongy. I got my first shunt at 6 weeks old. It saved my life. I have had several revisions but I have not had any revisions or surgery because of it, since u was 6 years old. I will be 24 next month. And as of 18 I have outgrown the need for my shunt. They won’t remove it because that would mean unnecessary surgery. But my body doesn’t need it anymore.
    I will be always thinking and praying for your family.
    God bless you!
    Rachel

    Like

  18. Melissa · March 16, 2015

    Thank you for sharing your story thus far and the beautiful pictures. Your love and joy of new parenthood is inspirational. All parents should be so joyous. God Bless Annalise, her mommy and daddy, and her doctors. May she continue to defy the odds.

    Like

  19. Lorie Ann · March 16, 2015

    What a beautiful blessing you have been given. Never loose hope. My son was never supposed to walk or talk. They didnt even thi.k he would make it past his 5th birthday. Not only does he walk and talk, he is 9 and runs, rides a bike, jumps, and is living life. Never ever give up.

    Like

  20. Sandra Atalig · March 16, 2015

    I had a son name Dravin Joe who was born with hydrocephalus, too. He had surgery to insert a shunt on his head to ease the pain he was suffering since birth. He lived for 1 year six months and 8 days of his life with us. I can imagine what you have and been going through with your new born. She is such an adorable fortunate baby with such great loving parents. I know God is good and has so much for Annalise Hope. I admire your love and affection and the decisions you both are making for your daughter. Follow your heart.

    Like

  21. accsoleh · March 16, 2015

    Praying for you and your family.

    Like

  22. Marcy · March 16, 2015

    Her photographs are beautiful. Your story is inspiring to all of us.
    God will take care of Annalise.

    Like

  23. Natasha · March 16, 2015

    Too beautiful what a precious baby xx

    Like

  24. dpottercrew · March 17, 2015

    Happy 1 month Birthday sweet girl! Having your child go through surgery is so terrifying but with all the prayers I believe the Lord will bring you both comfort and peace. During my daughters shunt placement I recited Isaiah 41:10 over and over in my head and I was brought so much comfort from Him. I will be praying for all of you over the next few weeks. Our God is bigger than all earthly things.

    “Don’t be afraid for I am with you, Don’t be discouraged, for I am your God. I will strengthen you and help you. I will uphold you in my righteous right hand.” Isaiah 41:10

    Like

  25. kelly · March 18, 2015

    God bless you sweet baby.

    Like

  26. joannawiggin · March 23, 2015

    Reblogged this on beautyinthedust and commented:
    And speaking of beauty…little Annalise Hope is beyond beautiful. I just LOVE the pictures of her outside, enjoying nature. Blessings to this family.

    Like

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