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!