March 23rd- Biggest Day Yet

Family and friends-

I am SO excited to say that Monday went so well! It was definitely Annalise’s biggest day of her life yet.

Sunday night I was already freaking out because she had to stop eating formula by 1:30 AM. … and then she could only have clear liquids from 1:30 AM until 8:00 AM. This last weekend Annalise’s appetite skyrocketed. She was eating ALL the time and SO much. I knew that it was not going to be a fun night- especially since she has finally learned how to cry! But…. Funny how anytime I am worrying or freaking out about something, it always goes the other way. She slept through most of the night, only waking up at 4:30 and then 7:30. We had to be at the hospital by 10:30 for a surgery time of “around” noon.

After we got to the hospital and checked in, we waited to be called back. At about 11:10 AM, we went back into a room to check her vitals and get her ready for surgery. For the next hour and a half, we waited and waited. The neurosurgeon finally came into the room seeing if we had any questions before the surgery and went through everything with us again. Then his nurse came in at about 1:00 PM to lead us back to the area where we had to drop her off and say our goodbyes. That was definitely the hardest time for me…. Watching the nurse take her away, feeling so helpless. I may have cried a bit.

We were then led to a different waiting room to stay for the duration of the surgery. At about 1:55 PM, we were called to step into a room and answer the phone for our first update. The nurse called and said that Annalise went under just fine, had 2 IV’s in place (in case one of them didn’t work since her veins are so tiny) and that they had just made their first incision. Everything was going great so far!

Then 2:55 PM came around…. We were called back into the room to meet with the neurosurgeon because the surgery was done!! Once we were in the room, the neurosurgeon walked in and the first thing he said was, “Well…she has a really bad haircut…. but everything went great!” He told us about where the incisions were and how big they were and just went over any questions we had thought of during the wait. After we got done talking to him, we went back out into the waiting room for the longest wait yet. We had to wait for Annalise to wake up from the anesthesia before we could go back to her room and see her.

Finally at about 3:55 PM, we were told to get our things and go to her room! By this point, we were SO ready to get back there and just give her lots of kisses! Once we got to her room, the nurses told us how she was doing, took her vitals again, and answered any questions we had. As soon as they were done with that, we couldn’t help but get her into our arms.

Daddy went first and as soon as she got into his arms, she let out a whole bunch of smiles. It was the most precious thing ever. It was SO good to see our little girl still smiling right after major brain surgery.

The rest of the night went so well. She slept through most of the night, but when she was awake- she was SO bright eyed and smiley. Around 8:00 PM that night was the first time she took a bottle and kept it down. She was going to the bathroom like she was supposed to and dirtying her diaper. She slept through most of the night, without having to take more pain meds! She was such a trooper and so strong!

 

In the morning, the neurosurgeon came in to check on her and take off her dressings! He said everything looked great and that meant that we could go home that day! My only concern though was that she was still on an IV and wasn’t taking a bottle that much. So we took her off of her IV around lunchtime and waited until later that afternoon to leave. This was so we could make sure that she was eating okay before we left. She apparently wanted to show me up and ate the most she has ever eaten that afternoon. Finally at about 4:45 PM that afternoon, we left to go home.

Last night went just as well as everything was going in the hospital. She spent half the night in her crib (which was the first night she has ever been in her crib because of her body temperature problem) and did great!

 

She has been eating so well since we have been home and keeping it down as well! Our nurse came over around 11 AM this morning to do her post-op checkup and all of Annalise’s vitals were great! Her weight has even gone up to 9lbs 7oz!!!

Overall, Annalise has been doing great… not really showing any pain. She does get a little irritable and distressed when she’s hungry or trying to do her business but I think that is expected after surgery, let alone with a baby in general. ;P Otherwise, she is her normal happy self who loves bath time! 😛

 

Now that I went through the basic, boring stuff… let me tell you about all the changes we have seen in just one day post surgery!!!

When we brought her to the hospital, she was still wearing preemie clothes that were still a little bit too big on her. When we were packing up to leave the hospital, we put the preemie clothes on and they were too small! Her long, super skinny body had turned into a nice size. You could immediately tell that the fluid in her head was getting through to her body within one day. She even has little “fat rolls” on her thighs now! SO CUTE!

Understandably, her head is completely different now. Her hard, heavy head is now not as heavy and is super soft. Picking her up for the very first time after surgery was SO weird because we had gotten so used to a hard structure. We slipped our hand under her head to pick her up and our hands literally caved into her head. The easiest way to explain is that her head feels like a sponge. You can press almost anywhere on her head and it goes down a little and bounces back up. This morning, it was even worse. When we picked her up, we could feel her skull bones moving. It is definitely something we are going to have to get used too. Luckily, the neurosurgeon told us that the part of the brain that tells her skull to fuse and go back together is there but that it would just take longer than normal to get there.

Because the pressure is off of her head, you can see changes in her face now. Her once very prominent veins in her forehead aren’t as protrusive now. Her eyes are not as sunken in and not as bulgy as they used to be. Along with that, she is a lot more alert and attentive than she used to be. She can keep her eyes up for longer periods of time and is always looking around now!

Another change is that she is A LOT more vocal now. She is CONSTANTLY making noises. When she is just lying down, she’s making noises. When she’s sleeping, she’s making noises. When she is eating, she is making noises. When she is hungry… boy does she let you know now!

One of my favorite things now is that she can wrinkle her nose and forehead!!! It is seriously the most adorable thing seeing her forehead wrinkle. It really is the small things that you don’t really think about with “normal” babies that can bring so much joy to us!

And if you thought she had a lot of facial expressions before, you should just see them now!!! We may be obsessed…. And we may have a lot of pictures to try and capture these faces. 😛

 

Overall, we are so excited to see such changes within just one day! We can’t wait to see what else is going to change/improve over the next days, weeks, months, and years to come.

One of the things we haven’t mentioned is that because we decided to go through with the surgery, we can no longer be on hospice. Hospice is considered part of the comfort care plan so we had to switch to “home health”. Because of this, we no longer get formula and diapers provided for us. Also, we may have to pay a copay every single time our nurse comes to our house for her normal routine checkups like we have been doing (that is up to Annalise’s insurance if they will pay that cost or not and we have not heard back from them yet regarding this). Because of these reasons and the fact that we want to be able to stay at home with her and do everything necessary to give her the best life possible, we still have our gofundme page set up. (http://www.gofundme.com/hopeforannalise) We appreciate every little thing SO much.

But most importantly, we appreciate your prayers. Our new journey with little Miss Annalise is just beginning. We are so ready to see what all she can do and what else she can prove the doctors wrong on! 😉

She is our fighter (who has God sustaining her) and we could not be more proud, honored, and blessed to be apart of her miraculous story.

Thank you to everyone who has sent positive thoughts and prayers our way over the last several days! They were definitely felt and greatly appreciated.

 

Miss Annalise wants everyone to know as well how happy she is that you all have been praying for her!

Thank y’all again and I can’t wait to update you when Annalise reaches even more new milestones!

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35 comments

  1. tina · March 26, 2015

    Soooo happy for her and u all.. praisespecially be to Jesus..

    Like

  2. Karlie · March 26, 2015

    I’ve been waiting for this update all week and I
    So happy to hear she is doing so well and is improving daily. Is there an address or PO Box where we can send gifts?

    Like

  3. Bianca · March 26, 2015

    I saw this story through Kim Vogel Sawyer’s facebook page and keep looking for updates through her. I’ve followed it now, but I look forward to reading these updates and seeing the miracle of Annalise. It is so beautiful. She has got to have the cutest little face. 🙂 I’m so glad the surgery went well. My mother sent me off to surgery multiple times when I was a baby, so I can only imagine that pain. She’s a trooper, though! I know all my surgeries caused me to be a stronger person, so I will assume that it will be the same for her. The doctors also put limits on what I could do, but I proved them wrong, which Annalise will continue to do, I’m sure. She is beautiful and well loved. I can already see the difference since the surgery. I will continue to pray for her and you all.

    Like

  4. dee steinbach · March 26, 2015

    I have sat here for 20 minutes trying to read your update because I couldn’t stop crying myself, so it is hard to read when you cry… Anyway, I praise our Lord that she is doing so well. You have an amazing journey in your life now. I know God will bless you daily with love, fun and challenges. I know we do not personally know each other, but God has blessed my husband and I with our beautiful son, who spent the evening telling us in his own unique way how he wanted to buy a green truck (not a toy one a real one). So we had to sit down and search the internet for one and hopefully he will be employed soon so he can earn money to buy it. Although he will not be able to drive it, the support staff and his brothers can use it to drive him places he needs to go. He is passionate about his vehicles and we enjoy life with him daily.
    Please continue to keep God at the forefront of everything and you will be blessed in the end, no matter what challenges Annalise Hope brings to you. Please reach out to parent supports and your local infant toddler program for early intervention services. These services can change her life. If you are in Kansas the organization you will want to start with is Families Together at http://familiestogetherinc.org/ If you are in Missouri http://ptimpact.org/
    Either of these organizations can help you find local resources that can make a difference in your life.

    One word of suggestion as one mom to another, start a word doc now of medical procedural dates. Maybe even an excel doc. Some kind of ongoing document of the date, the procedure that was done and possibly why. AS the years go by and more things happen, the harder it is to remember exactly what was done and when. I print this off every time I need to take Jake to a new doctor and they love the concise medical history.
    I do a separate list of his current medication, mostly because we do herbal instead of standard prescriptions, but I can’t tell you how much time and energy it has saved.

    God is good all the time!

    Like

  5. Karen Grimez · March 26, 2015

    I just met this baby tonight and am totally in love with her!

    Like

  6. Jim and Pam Canady · March 26, 2015

    Great update! Candace! Thanks!

    Like

  7. Connie Weber · March 26, 2015

    What a story. Thank you so much for sharing your journey through this with us so we can hold you all in our prayers.She is gonna show the world and already has just how strong she really is. So excited for you all!!

    Like

  8. Jen C · March 26, 2015

    Oh my!!! I’ve been obsessively checking your blog for new updates. I’m THRILLED for all of you that things are going so well! The changes are so apparent in those pictures. Annalise has always been beautiful, but she is even more gorgeous now. I just love her!

    Thank you so much for the update. I will wait with baited breath for the next one!

    Happy happy thoughts for you all!

    Like

  9. Rhonda Reinhardt · March 26, 2015

    It has been a joy to see her defying the odds and limitations the doctors had placed on her. What a precious baby girl! Thanks for sharing your journey with us. May God continue to bless and guide.

    Like

  10. Amy Watercott · March 26, 2015

    This is amazing! I am really lifted up by your outlook and courage! She is beautiful and it’s so exciting to her about her progress. Thank you so much for sharing her (and your) journey with strangers. The pictures and info are beyond precious.

    Like

  11. Aubrey Gallagher · March 26, 2015

    This is the most adorable little girl!!! #cantgetenoughofhersweetface ♡♡♡ Love and prayers to you all- we are holding you up to the Throne.

    Like

  12. rach666Rachel · March 26, 2015

    I love getting your updates thank you for sharing your beautiful daughter with us all my thoughts are with you all stay strong

    Like

  13. Michelle Johnson · March 26, 2015

    What sTate do you live in? I work for an organization in SC calked Family Connection, parent to parent support for special needs families. I would love to help with resources available in your state. Please email if you would like to talk. Michelle Johnson

    Like

  14. Janey M · March 26, 2015

    Praise GOD! I pray for continued blessings and strength for all of you.

    Like

  15. jeanne · March 26, 2015

    Oh she is so beautiful! I wanted to let you know that your church family loves you and we pray without ceasing for you.

    ❤😁

    Like

    • Jennifer lutterman · March 26, 2015

      ❤️❤️❤️❤️❤️❤️I love her too. God made a beautiful little girl! She has a tremendous impact on all. God is good. God is love. God our Creator. When she smiled I burst into tears! 🙏🙏🙏🙏🙏🙏

      Like

  16. Janie Elhard · March 26, 2015

    So thrilled to hear she is doing so well!! Our God is SO GOOD-ALL the time. Praise Him. Can’t wait for your next update on this sweep little thing ❤

    Like

  17. Janie Elhard · March 26, 2015

    I mean Sweet!!

    Like

  18. kallia risley · March 26, 2015

    can’t wait to hear more about how she is doing. hang in there God can do miracles and she is such a precious little girl and God has great plans For her life, and He will give you strength and encouragement through this time 🙂

    Like

  19. halley · March 26, 2015

    I was holding it together until I saw the picture of her smiling after surgery and then I lost it! Ugly crying at my desk- tears of joy for a baby and family I have never met but pray for daily! She is so sweet and beautiful!! God bless your whole family!

    Like

  20. Emma · March 26, 2015

    What a beautiful wee lady, I’m sending you all love and hope Xxx

    Like

  21. Dorothy Ransom · March 26, 2015

    What a brave family and I love her little pink hat. I will be praying for all of you.

    Like

  22. ajkelley73 · March 27, 2015

    I am so happy things went well during surgery. She is so adorable . I will keep you in my prayers.

    Like

  23. Hiedi · March 27, 2015

    I just Wanted to say that I am so happy you two decided to go ahead with the surgery. She looks wonderful!! My brother also has hydrocephalus and he’s had his shunt in since he was first born… He is now a happy and healthy 24 year old. 😊 You guys have a long road ahead and I give you prayers for the years to come. 🙏

    Like

  24. momof3lilmen · March 27, 2015

    So happy to hear! Praying for you all!

    Like

  25. jimmy capps · March 27, 2015

    aww wata precious lil angel god werks misteryous ways u hava beyutiful lil baby

    Like

  26. Ashley · March 27, 2015

    I cry my eyes out every time I read your updates. God is so awesome! Annalise is so beautiful, I think about her all the time. She is so strong and has wonderful parents. I will be donating to your gofundme but also wanted to ask if you take any donations.. I have lots of girl clothes ☺️

    Like

  27. Laurel · March 27, 2015

    I’m following your story from Ohio. What an amazing family. You are showing great strength in the hardest imaginable situation. God bless your miracle baby!

    Like

  28. Stephanie · March 27, 2015

    Such a beautiful girl! Baby wrinkles are just the best. Keep being strong momma!

    Like

  29. Jami · March 28, 2015

    What a blessing! You all are in my family’s prayers! God bless you and that precious little sweetie.

    Like

  30. Natalie · March 29, 2015

    So glad everything went well. Baby Annalise is just gorgeous, love those little wrinkles on her. Waiting patiently from all the way in Australia for more updates.

    Like

  31. my western nest · March 30, 2015

    Praise God! So happy to hear your update. This pictures of your little miracle baby smiling brought me to tears. Praying for her and for your little family every day!

    Like

  32. Kate · March 30, 2015

    You’re in our thoughts & prayers daily! We love seeing these awesome updates on baby Annalise. She’s adorable and such a trooper!! God is good!! We miss you at daycare, but are so happy you are enjoying every minute of her you can!!! ❤ –Stella, Brooklyn, Kate & Jon Alvarado

    Like

  33. Sarah · March 30, 2015

    What a wonderful update! So happy to see the amazing blessings in your life and your wonderful Miracle, Sweet Annalise. Thank you for sharing with us.

    Like

  34. Jen C · March 30, 2015

    I know you’re very busy with you little beauty, but can we have an update soon? I’m going crazy over here!!!

    I’ll keep watching – you keep parenting. I’ll wait (impatiently). 🙂

    Like

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