Hello, sweet people! It’s so good to have a place I can connect and share with other folk who know and understand me. So many of you have been with me as a single writer, to married, and now as a pregnant momma. Thank you!
Pregnancy for me has had its ups and downs, highs and lows. It has been one amazing event and one I am so thankful for. We’re 22 weeks along and our baby boy is kicking more than ever. (And yes … if I had told you originally that he was a she the jokes on us! Ha! Wrong ultrasound guess again!) Our baby is named Uriah , meaning God is our light, and he is a joy to us and a blessing we love already.
And do we ever need God to be our light. Two days ago, I went to my ultrasound expecting to hear good things, instead we were given sad, hard, life-changing news.
Uriah has hydrocephalus which means he has a fluid build-up in his skull. Normally, we all have some fluid surrounding our brains … it’s a necessary part of our bodies. But for some reason our baby boy has more than normal which means there is a blockage or problem somewhere. The specialist says it is severe.
Hydrocephalus is a big, scary term but it doesn’t necessarily mean big, horrible things. Uriah will need a shunt to relieve the pressure from his head which means he will (if I understand correctly) be having a form of brain surgery after he is born and until a good shunt is in place which doesn’t become blocked or infected. This is a life-long condition.
As far as mental and intellectual disabilities we won’t know how the pressure affects baby until he is born. Many children (and elderly) with hydrocephalus grow to have normal development; God made the brain awesome that way especially since babies’ skulls are soft and able to sustain pressure! However, there is risk that the fluid build-up will prohibit normal development of our baby’s brain and his mental abilities.
I wish that was all that was wrong but Uriah has one other complication. His femurs are 22 days behind in growth. This, along with the hydrocephalus, signifies that there could be chromosomal abnormalities with the three most common being Trisomy #13, 18, or 21 (Down Syndrome). Both #13 and #18 are fatal and are termed “incompatible with life.” Of course, #21, Down Syndrome, is different and can promise all sorts of possibilities within that spectrum.
So, at this time, there is no definite answers. We do know our baby has hydrocephalus and that it may be his only issue; if that is the case we can hope for very good things as many children have had this and develop well. However, the short femurs are a big concern and do point to chromosomal problems which would be a double whammy.
What next, you might ask? I’ve been told that pregnancies with issues like this tend to be a waiting game; there’s very little we can do. There are tests which we may take in the future but they would only (possibly) help pinpoint or rule out possibilities but one of them poses a risk to the baby. I just learned that I could get a simple blood test to help rule out chromosomal abnormalities which would be huge for us. In reality the tests may help us prepare some for what is to come but there will be nothing we can do for Uriah except watch his progress diligently.
Sweet people, this is a very, very hard time. Except for our crazy misdiagnosed miscarriage, (which still makes me laugh when I think of the craziness that time was!) this has felt like a very healthy, normal pregnancy so discovering that it isn’t feels a bit like being caught in a bad dream. It feels like a bad joke and I’m waiting for someone to slap me on the back and tell me they’re kidding and then apologize for being such a jerk.
Please keep baby Uriah in your prayers. No matter his abilities or disabilities we love and cherish this little boy and yearn to give him the best life we can. Pray for God’s will to be done in our lives.; it’s what we want most of all. We want to trust in God for all our needs and this means taking one day at a time. We know that Uriah has purpose in this world and was fearfully and wonderfully made and I hope we can meet this little guy and show him all the beautiful things this world has.
I had hoped for a simple, natural home birth but now we’re looking at time in the NICU three hours from home in a specialized hospital but I am so grateful we live in a time and day where such specialized help is available; I just need to be flexible.
As for how we’re doing, we’re okay. It’s really tough stuff to be told your baby will have life long, life altering, life threatening issues. This changes everything for us. And, we’re okay. We know God is incredibly good and that He withholds no good thing from us and that includes baby Uriah’s issues. He has a plan and even if it hurts us we want to walk in that plan. But we will need your prayers during the next several months; I know God works in and through them. <3
With lots of love, blessings, and coffee,