I apologize for making y’all wait so long to be updated! We wanted to make sure that certain things were taken care of before we posted for everyone to see! But- the wait is finally over!
On Monday, January 19th, Kev and I went to Shawnee Mission to see and meet the perinatologist. (We have decided to deliver at Shawnee Mission because of proximity and the outcome being the same. This is why we were meeting up with the specialists “again”. We have never met/seen/talked to the specialists at Shawnee Mission. We wanted them to do their own looking and researching instead of just going off of Children’s Mercy’s information.)
We did an ultrasound to relook at the brain of our sweet little Annalise. And, of course, she wouldn’t show her face. She was curled up in a ball with one foot on top of her head and her hands over her face. We have yet to see her entire face straight on. She really must want our first look at her to be outside of the womb!
After we got done with the ultrasound, we went and sat down with our perinatologist. It was during this consultation that we learned something new. Annalise not only has holoprosencephaly, but she also has hydrocephalus.
Hydrocephalus is the excess fluid in the brain. This is the cause and reason for her abnormally large head. When babies just have hydrocephalus, doctors can just drain the excess fluid after they are born and the child can survive. In our case, draining the fluid will do nothing. This is because Annalise’s form of HPE was so severe that not only did the brain not split, the tissue in the brain is nonexistent. Usually with just hydrocephalus, the fluid just pushes the tissue to the outside so when the doctors drain the fluid, the tissue will form back. Because Annalise has no tissue, draining the fluid would only do just that- drain the fluid.
The perinatologist at Shawnee Mission did confirm that Annalise has the most severe form of HPE and was very confident that she would not live long. Now, no one can give us a rough time frame of what “not long” is, even though the doctors tried to and said it probably wouldn’t be more than one hour. Only God knows how long she will be with us. We have hope that we will get exactly what we need though. We know His timing is perfect. Whether we get one minute, one hour, or one day with Annalise, we know it will be perfect and the most cherished time we will have so far in our lives.
During that consultation, it was also confirmed that we would have to do a C-section because of the size of her head. When we went in for the ultrasound on Monday, her head had grown from even just the last appointment. If Annalise does not come on her own in the next several weeks then we can have a scheduled C-section at 36 weeks gestation instead of 39. This is because of her condition and the head growing daily that they can do it early.
So! We decided to go ahead and schedule it!!!
If Annalise does not arrive on her own in the next couple of weeks, we are scheduled to have her on February 20th! That is SO close! We are so excited/nervous/scared/ready for this day!
On Wednesday, January 21st, we met up with our OB for a regular checkup (which we do weekly now because of the situation). Then we went back later to meet up with the neonatologist. We met part of the team that will be in the room with us specifically working with Annalise. This time was spent discussing the different birth plans and how we want them to treat her when she is born. They described to us how Annalise just has her brain stem. So when she is born, the signals that are sent through the brain stem to the brain have nowhere to go. She won’t know how to do things on her own because the brain stem isn’t able to transmit the signals where they need to go. Simple things like knowing how to breathe and how to swallow probably will not happen. This is why they can say with confidence that she will not live long.
They did their best at explaining in detail what the day of our C-section would look like and how to help us get prepared. Now it’s just up to us what all we want to happen. Decisions have to be made-whether big or small. Decisions as simple as do we want to hold her to big decisions like having her be an organ donor and so forth.
The main decision we have to face is how we want the doctors to treat her. Shawnee Mission described 2 different ways of doing this. Either there is “comfort care” or “aggressive medical care”. Comfort care is how they treat any “normal” baby. If the baby comes out and can’t breathe on their own, they will use the oxygen mask and so forth. The child stays with you in the room and you get the skin-to-skin contact while attending to the child. Aggressive medical care means they do whatever surgery/operation/etc. that is needed to prolong the life of the child. This would mean that they would take Annalise and rush her to Children’s Mercy to operate because Shawnee does not have all the necessary medical equipment for those types of situations.
This is where the tricky part comes in. There is absolutely no surgery or operation that will fix her brain. So either, we “let nature take its course” or we do whatever necessary to prolong her life when there is no fixable surgery.
Over the next couple of weeks, we ask for prayers of guidance and comfort as we make all the necessary decisions. We ask for prayers of peace over all of our final decisions as well.
So that is all the big news I made y’all wait so patiently for! Thank you again for all the thoughts and prayers over the last several weeks and months!
Just for a fun update- we took our youth group to Winter Jam (a Christian concert featuring several bands) last night. So Annalise got to experience her one and only Winter Jam!
I think she loved it! 😉
Here’s another random tidbit of info. I have a love/hate relationship with Hobby Lobby. Every time I go there, i just dream of how I would decorate my house and always want to buy everything there. Well, I made Kevin go with me the other day because they were having some good sales and I knew if I went alone, I would buy too much. But look at what we found and is now in our living room for all to see:
There is no need to even explain this. It’s perfect. It fits us.
Well…. with all that said, my next check up is Wednesday. We have to continually watch her to make sure she isn’t getting too big. If that would happen, we would have to do the C-section earlier or do a classical C-section. But, with how stubborn and hard headed she has been, I’m pretty sure she will wait to make her debut on the 20th! 😉
Oh! One more thing. (And you thought you would get away with me not reminding y’all!) Remember to share our fundraiser page! (http://www.gofundme.com/hopeforannalise) Now that we are only 25 days away from meeting our sweet, beautiful Annalise, expenses are going to start sooner than we thought! We would appreciate it so much if you could continue getting the word out to help support us in this journey! We love you all and really do appreciate the prayers and support we have been getting.
Have a blessed week! We will continue to update you as the days progress over the next month!
“My hope is built on nothing less
Than Jesus’ blood and righteousness;
I dare not trust the sweetest frame,
But wholly lean on Jesus’ name.
On Christ, the solid Rock, I stand;
All other ground is sinking sand,
All other ground is sinking sand.”