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 27^th) 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!!!