After many attempts at diagnosing our baby's symptoms the results are officially in and she has an unknown diagnosis. All they can really tell us is that it is not genetic or chromosomal and they have ruled out all trisomy's and tubal defects. Unfortunately the testing raised more questions than answers and we are at a dead end.
The plan is to continue to do ultrasounds every 3 weeks to monitor the progression of her hydrocephalus and single umbilical artery. If she makes it to the third trimester, they may attempt to do shunting while she is still in utero to give her more of a chance at life. The prognosis is still very poor, but they can't give us much to go on.
So with the very few details I have let me tell you what I do know. We have our daughter right now and for now we are happy. It doesn't mean we are are ignoring the future, we are just content with what we have now. We will deal with whatever comes our way when it is time. And at that time, Travis has promised me a puppy so I know it will be ok.
We will keep everyone updated and thank you for your prayers. Also, if anyone has any great suggestions for names we need one asap!
10 comments:
you are amazing!!! we will continue to keep you guys in our prayers.
I always wanted a little girl that I could name Belen. (Spanish for Bethlehem) It was very popular in Chile. Joe likes the name Alaska for Malamute Dog. Nicholas wanted us to use the name Hulk for Matthew. But since it is a girl maybe you won't want to use it. (There is always She-Hulk).
You sound very prepared for what ever may come, well at least as well prepared as one can be. I came across your blog and just wanted to make a comment. I don't come across many who are experiencing the lack of a diagnosis with their child before birth. If I would have had an ultrasound with my daughter it would have likely been that way. Anyway I just wanted to let you know that there is a community of parents who have children with signs and symptoms where the diagnosis is unknown. I'm not sure if that will be helpful or not but am letting you know just in case www.undiagnosed-usa.org
How frustrating to not have a real diagnosis. We will continue to pray for you all.
Good luck deciding a name for your daughter. We have a few that we like but they aren't too generic. We like Ame (Amy in Spanish) and Analiesa (Anali) because of people from my mish and we like Sara.
We love you lots
okay, here are our suggestions:
Jason & Dana: Adalyn (add-a-lynn)
Jayden: Meg or Meagan
Braley: Hazel or Jules
Ansen: Tyler...ha, he LOVES this name....maybe better suited for your puppy
Love you guys!
Perhaps, the Lord is in the process of healing your baby; therefore, "no diagnosis" available at this time.
It's interesting that Braley chose "Hazel" - Oma's mother's name.
When choosing a name, it's helpful to discover if you and Travis want to highlight a specific nationality, use old family names, want cutting edge names, choose names for their meanings, and then go from there. Do you want a pattern for your kids - starting with one letter, rhyming, from same era, etc. Then, you should be on your way. Enjoy choosing the perfect name for your little girl.... :)
I love the name Malia, which I thought I made up until I was told by a friend that there is usually one Malia in every Philipino family. I still love it even though I didn't make it up. I'll keep thinking, the name game is my fav and possibly the reason for why I have so many children.
I think that the name Helena would be a great name for your little baby girl. this name means sun ray or shining light and I think that your daughter is the closest thing to heavenly father that I know at this moment. Enjoy picking a name.
you k-dawg. luke was just reading to me from the "teaching of the presidents of the church" Joseph Smith book and i thought that you would like to read them, they are rad and i think they will make you happy, start on page 176 and read for a few pages, it's sooo good.
I just thought of a name - "Hope." Does it need explanation?
You continue to be in my thoughts.
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