Well, today (May 13) has been a bit on the emotional side. I’m not even sure where to start but many of you that have followed our blog know that this pregnancy has been full of surprises:
Lately, the morning sickness has been a bit better but I’ve been dealing with some other extreme issues like low iron, extreme fatigue, major headaches, elevated blood pressure, and shortness of breath. I’ve had some cardiac testing done and am waiting on the results as well.
I’ve also had some issues with a kidney stone that just doesn’t want to pass… frustrating and painful!
We also had an MRI done last week to check on the fluid on baby Shyanne’s brain. Well, I wasn’t sure what to expect and I had done a little research (I don’t recommend doing this) prior to the MRI so I had some ideas of what it could be.
Here are some screenshots of our results:
That’s a lot of medical lingo that can be quite confusing but we are trying to stay positive about her overall outcome.
From the bit of research I have done I believe a diagnosis of Dandy-Walker and Down Syndrome is extremely rare… we won’t know for certain about her Down Syndrome until they do the blood test after birth but all of the other findings are pointing towards the likelihood of her having it.
I have requested a meeting with the doctors who will be treating her after birth and waiting to hear back from them. Our next OB appointment will be next Friday and I will be asking even more questions then.
After a really good cry I sent this message out to some of our family and friends:
[We got the results back from last week’s MRI and our heads are spinning at the moment.
We don’t have a lot of the answers for the questions that many will ask but we have requested an appointment to meet with the specialists who will be caring for baby Shyanne.
First, it appears that she has a duodenal atresia.
‘Duodenal atresia (DWAH-de-nal ah-TREE-zha) is a condition that occurs when a portion of the duodenum doesn’t form. This condition results in a blockage (atresia) that stops food or fluid from leaving the baby’s stomach.’
We know will need surgery and a NICU stay after birth so the doctors can fix this. She will probably have a feeding tube for a bit as well.
That’s not all though. Probably the most concerning is the issue of the fluid on her brain which is consistent with Dandy-Walker malformation.
‘Dandy-Walker syndrome, also known as the Dandy-Walker malformation, is a rare, congenital hydrocephalus (a buildup of fluid in the brain) that affects the cerebellum portion of the brain. The condition, which occurs in 1 in every 25,000 to 35,000 live births each year, causes different parts of the cerebellum to develop abnormally.’
We won’t know the full extent of her condition until birth but it can cause a wide variety of issues.
We will be learning as much about her conditions and treatments as we can but all of this is a bit overwhelming so please be patient if we don’t answer questions about her health issues right away.
We just ask that you keep us in your thoughts and prayers as we continue to count down the days until we meet this precious little girl who has already defied the odds by making it this far.
We know that God has a plan for her and that’s why he is making her a little extra special… we might not understand His plan but we have to trust Him.
We love you all!]
Right now the next couple of months are full of uncertainties but we will continue to be strong and will try to stay positive with our thoughts. We are also asking for prayers for baby Shyanne and our family.
There have been a few days where I have questioned why this has happened and how but I know this is all in God’s plan and it is not meant for us to understand but we need to trust him. I have dealt with feelings of guilt… that maybe I did something to cause this but everything I’ve read says that the causes are generally unknown. All I can do is to try to continue to stay as healthy as possible so I can give her the best start in life.
As you can probably tell I have had my hands full with all of this and I’m still trying to get this house organized which has been a bit challenging as I can’t walk from the couch to the bathroom without getting short of breath or feeling faint.
There are still so many things to get finished before she gets here although I know some of them can wait a bit as we most likely won’t be bringing her home right away. I need to work on getting some freezer meals made up soon… we still need to bring our freezer over as well. I’m really trying not to get overwhelmed with everything but some days sure are harder than others.
I do have a few posts, including the bathroom makeover, that I’ve been working on and I will try to get them out as soon as possible.
Thank you all for support and understanding through this time.
So… I’ve had a few days to process all of this before this post was published and I can honestly say I have a feeling of peace about it. Yes, it still scares me and I question whether I can be the parent I need to be to this special little girl but I trust that God has reason for allowing this to happen.
I still tear up when we have to talk about it or tell someone the news for the first time because it is quite shocking and confusing to hear… I mean how do you explain that your baby has something terribly wrong with her brain but it isn’t necessarily life threatening?
When I explained it to someone yesterday I could see that it hit Mr. Awesome really hard... he has been so positive and supportive but I know he has a lot of the same feelings that I do.
It brings up so many questions that we don’t have answers for. I know that God is going before us and He has the answers and He knows what the future holds.
I know from past experiences that some of my most difficult and painful times have brought forth some of the most beautiful blessings… so all I can do is take things one day at a time.
This experience has really made me stop and think about all the things I have taken for granted… all of the healthy babies I’ve had… I’ve even been able to sympathize with some of what my adopted children’s mother may have went through at some point because this is so overwhelming!
I’ve also come to realize that I can’t worry or dwell on the What if’s… we don’t know what the future holds. We don’t even know if we have a tomorrow or even another breath.
When I first got married I couldn’t have told you how many kids I’d end having or that I’d adopt! I couldn’t have known how that marriage would end or that I’d end up raising our kids alone… that would’ve seemed impossible… it did seem impossible when it happened but with God’s grace we made it through!
Often we are told that God won’t give us more than we can bear but right now it feels like He has. I’ve had to lean on Him and honestly I feel like He has picked me up and carried me when I was ready to just give up.
I have been reminded that He knows each and every person before they are born. He is the one who knits them together in the womb. I also know He is not finished with our baby yet and that He is making her extra special for a reason… that excites me a
little LOT! She is jumping as I type this last part.
I just want everyone to please pray for us as we get ready to meet this precious little girl. Please don’t feel sorry for us because this is God’s plan. I do ask for prayers for our safety and well being and for the health and safety of family. I ask that God’s will be done according to His plan, not ours.
Thank you and God Bless!