I know it has been a LONG time since I last wrote a blog post. (A very long time at that and I do apologize!) I’m sure you can understand how life just gets busy and you don’t have even an hour just to sit down and write….but since it has come to my attention in the last few weeks that there are so many people on our Facebook page that don’t know the background to our story…I figured it was time for a refresher! 🙂
(Reminder… you can always go back to all my old blog posts and reread them. ;))
So here is the background to our journey!!! 🙂
We found out back in the summer of 2014 that we were expecting our first child. Everything was going great in the pregnancy…no morning sickness, no problems in the routine checkups, etc,. When we went in for our 2nd trimester screening (the one where you find out the gender and REALLY check all the measurements and what not to make sure the baby is on track), that’s when our whole world changed. We were told that “the ventricles in the baby’s brain were enlarged”. They sent us to a specialist to further “diagnose” the situation. It was then (October 15th, 2014) that we found out that “baby girl” had the MOST SEVERE case of HOLOPROSENCEPHALY (HPE for short). They told us the 2 hemispheres in her brain did not split so it was just one big structure of fluid. Throughout the rest of our pregnancy, we went through bereavement counseling and talking to every kind of specialist to fully understand what was going on. Of course, they IMMEDIATELY threw out the idea to abort the baby due to there being NO chance of her living or even making it out of the womb.
It wasn’t until we were about 30 weeks along, (and visited a whole new set of specialists at a different hospital) that they added HYDROCEPHALUS on top of the Alobar (most severe) HPE diagnosis. This was when we were told that IF she made it out of the womb alive, she would be 4-6 weeks early and would die IMMEDIATELY after birth (they specifically GUARANTEED us that she would not live for any more than ONE HOUR!) This was when we scheduled our C-Section date due to her head already measuring way too big for a normal birth. (We also were told that this would help her “live longer” because then the pressure of birth wouldn’t be as stressful on her.)
We went through our entire pregnancy believing that she would pass away shortly after birth (but always held on to our hope anyways) and did everything according to that. At home, we only had a handful of outfits, one box of diapers/wipes, and a crib. THAT was IT. We already knew that if we came home without a baby, the sting of the crib in our bedroom was going to hit us hard but we knew that whatever time God allowed us with her was going to trump it all. We had every second of that day (her birth) planned out as if it was going to be her last second with us.
I canNOT even begin to explain you to the emotions that went on the day Annalise Hope was born. And here we are, almost an ENTIRE YEAR later…. getting ready to celebrate her FIRST BIRTHDAY!!!!!!!!
After she had made it a week, we decided to go get an ultrasound done on Little Miss Annalise’s head. This is when they CHANGED the diagnosis from HPE to HYDRANENCEPHALY (along with the hydro as well still). For those of you still unclear on what exactly hyrdanen is… simply put, she is missing most of her brain! It did not form. She has her brain stem (which allows you to breath and do all your basic functions, SOME of her cerebellum (which relates to muscular activity), and MOST of her temporal lobes (which mainly deals with hearing and some memory formation). The ENTIRE TOP HALF of her brain (forebrain) is missing and is replaced with cerebrospinal fluid.
The difference between hyrdran and hydro is that hyDRO is the excess of cerebrospinal fluid IN the VENTRICLES of the brain. So not only does she have extra fluid in the ventricles, it’s also in the brain area itself.
The SHUNT that she had placed when she was a month old, reduces and relieves the fluid IN the VENTRICLES… that means, it’s only “helping” the hydrocephalus. So yes, she still has a lot of fluid in her brain (due to the hydran), which is why her head is still “big”. But you have to remember… at birth her head was 47cm in circumference. Right before the shunt surgery it was 57 cm… and went back down to 47cm after the surgery. It has stayed the same with a little bit of fluctuation (48-50cm) as her skull shifts and moves, trying to find it’s way to fuse together somehow.
When the diagnosis changed from HPE to Hydran….the outcome of life changed a little bit as well. Before it was NO chance of living. When they changed it to hyrdan, it was “she CAN live up to ONE YEAR, but MOST die WITHIN that first year”. They always said that she would be in a “vegetative state” and wouldn’t be able to do ANYTHING. And by anything… I mean EVERYTHING. No eating, swallowing, talking, crying, crawling, walking…. literally, they ruled out everything. They said she would be deaf and blind even. (HAHAHA!)
Over the past year, she has amazed all of her specialists and doctors. Every time they see her, they comment that they can’t believe how well she is doing and how MUCH she is doing.
When it comes to prognosis (how long she will live). they will NOT tell us anymore. They simply say that it’s up to her and her body. She’s going to live as long as she allows. To which we always say… GOD is sustaining her life… HE decides how long she is here with us.
We won’t ever know when that day is going to come. It could be today, tomorrow, or in 5 years. Only God knows. But we will continue enjoying and appreciating each and every minute we get with her.
I THINK that sums everything up. (You can always ask questions if you need to!)
Now that we got that cleared up 😉
The past month or so has been SO crazy busy. January FLEW by because we had SO many appointments. We had to do all of her checkups with every specialist since she had her first seizure back in December, along with all of her normal weekly appointments. We were practically doing at least 4 appointments EACH week…sometimes more.
And now that February hit, its been planning her first birthday and all that fun stuff! 🙂
Annalise has been continuing to grow.. size wise and developmentally! On Friday, February 5th, she weighed 18lbs, 7 oz (was 7lbs, 15oz at birth but at least 2-3 lbs of that was head) and was 28.5 inches long (was 20.5 inches at birth). She’s been stuck in size 6-9 clothes for months now and we are just NOW switching her from size 1 diapers to size 2! (whoot whoot lol!)
She is continuing to do well in therapies! We just got her special tomato chair for home too so that will help tremendously with neck strength and different muscles. She is so happy to be able to “sit up” like a big girl!
She is still “scooting” around even though she cannot lift her head yet.
Funny story about scooting… we have a “play mat” in the living room so the floor isn’t as hard for her to do tummy time or anything. She was laying on it, starting to fall asleep… so I went into the kitchen to wash her bottles. Kevin was reclined back, with the footrest up, on the couch… reading one of his textbooks for class. After a couple minutes, I come peek over the couch to check on her and could not see her. I walk around the side of the couch and she was completely OFF the mat and UNDER Kev’s footrest! Which means she had scooted about 4-5 feet! So, needless to say, her scooting has improved 😉
Her grasping has gotten WAY better as well. She is still left side dominant though. She will ONLY pick up toys with her left hand but she can transfer it and hold it with her right. So she can grip things with both hands, it’s just picking up things that she can only do with her left. She has even advanced from the baby “palm grip” to using just individual fingers. (These things probably don’t seem like a big deal to an average person, but it is a HUGE deal with her condition! Because she doesn’t have most of the part of the brain that deals with muscular activity, she doesn’t have all the abilities normal people do with their muscles. She has such low muscle tone almost all over her body that it makes simple things like that really hard to focus on and do!)
Her noises have been improving and she is making ALOT more of it! She still does not cry. She still does produce more of baby noises than anything else but there are times that you can hear her say “mama” or “mom” or “dada”… a few times she even said “hi”. But I guess that could always be our imagination hearing those things. 😉
She LOVES watching TV lately. She will seriously IGNORE us when she is completely focused on the TV. And by ignore, I mean she has swatted at me to stop bugging her to play or work out.. HA! She also still loves book and any toy that lights up, makes noise, or moves.
She is once again, obsessed with her feet and toes. Her toes apparently help with her teething! She is getting her two bottom teeth at once… and they are taking FOREVER. They have popped through the gums but have not fully set up shop yet. They seem to be bothering her more now that they are playing peek-a-boo than they did when popping through.
Her glasses are still a hard time. She will allow them to stay on for a little bit but once she has been using them for about 15-20 minutes, she gets really tired and they have to come off. So we can only use them for about 15 minute intervals. We have been focusing on using them for reading and more visually stimulating things though which helps with her wanting to keep them on. Also, now that we got the special chair, they stay on better. Because her head is such an odd shape and her ears aren’t quite even, the glasses don’t stay on when is laying down… which made it REALLY hard to use them. So we are excited for more and better opportunities to use them and see if they make a difference.
She is still eating and taking a bottle really well. Baby food feedings have been few and far between because we didn’t have anything to sit her in to do it. But now that we have a chair, she is doing really well. She still can only take about a teaspoon at a time because it takes so long to process how to swallow. It takes so long to feed her even just a teaspoon that after so long, she is just tired of doing it. We have found out that she REALLY dislikes fruits LOL! She always did well with her veggies… but for some reason… apples and bananas are not her thing. She spit them out or made herself gag on them. Silly girl!
At her one year wells child appointment, I’m sure we will have to start talking about what to do if she’s not getting enough nutrition by bottle. Whether it would be getting her to drink something other than formula or having to go the route of getting a g-tube. I do remember our dietician/nutritionist said that babes can live off of formula alone for about the first year and a half but it’s something that we will have to start thinking about/planning for in the next several months.
Other than that, I can’t think of anything else to update y’all on! She continues all her therapies (OT, PT, Vision, Early Ed) and sees her nurse weekly. She only has to see her neurosurgeon every 6 months. We now have to see her neurologist every 4-6 months to regulate and monitor her seizure meds. And she only sees her pediatrician on the normal baby wells child exams. We have been SO blessed to have a fairly “healthy” baby girl for the first year!!!
I still cannot even believe that her birthday is in 6 days! 6 days, y’all! February 17th is one of my absolute favorite days now and I am SO beyond thrilled that we get to celebrate this HUGE smilestone WITH her! I can’t wait to see what Little Miss Annalise does this coming year to keep proving the doctors wrong!
For those of you who don’t see our Facebook page, I’ll let you in on some exciting stuff! We have set up a PO Box for Little Miss so that you can send her birthday cards! I am making a “book” out of all the cards we get, to show Little Miss later in life (God-willing of course) just how loved she is from all over the world!!! It’s been fun seeing where all the cards are coming from and she LOVES looking at them and reading them (okay, okay, maybe more like eating them but same thing, right?).
If you want to send Miss Annalise Hope a card, you can send it to:
PO Box 14814
Lenexa, KS 66285
We rented the box for 6 months so you have time to send one, even if it arrives late! 🙂 (Some people have asked if presents could be sent and yes they can…. if they don’t fit in our box, they hold them in back for us 😉 We do NOT expect gifts or are asking for them….I just threw that in there for those who have been asking.)
We do still have our GoFundMe page up as well. (www.gofundme.com/hopeforannalise) We have been SO blessed with having that for the past year to help with bills and medical expenses. That money is what has helped me stay at home with Little Miss. Since Kevin is in seminary full time and only can work part time, he doesn’t have much income coming in. (I was the main income in the household before Little Miss arrived.) So that money that was raised LAST year, has been “my” income for the past year (which is actually less than what I was making in a year). We could never ask for anything more but we are at the end of it and trying to figure out how I can still stay home with her… so we had to throw that up there one more time 😉
MOST OF ALL, the ONLY thing we REALLY ask for, is your continued PRAYERS! They have been SO appreciated throughout this journey and they will continue to be!
We are SO incredibly GRATEFUL for y’all!!!
Since I don’t have much time left, I’m just adding the pictures off of our Facebook page since Christmas. So here you go:
We can’t wait to share all her photos from her one year photo shoot and birthday party that is happening next week!!!
We hope you all have a blessed weekend!!!
Happy Valentine’s Day as well!