Baby News: Our Little Boy, His Health Issues, and Your Prayers

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,

Frannie

17 thoughts on “
Baby News: Our Little Boy, His Health Issues, and Your Prayers

  1. Hi Frannie,

    God impressed on me how you are a blessing to Uriah as well as everyone else. I am convinced that Uriah has been greatly loved from the moment you knew he existed ( maybe before that?), and that he will be loved every day after that. With or without health issues HE WILL BE LOVED! That is how God loves His people and that is good news. Love you, and thank you for the example.

    JW

  2. Frannie, I am saddened by your news this morning, but I know your faith and it will sustain you. I will be praying for y’all during this walk of life. Our Lord is a merciful God He will hold you, comfort you and guide you.
    Love Debbie

  3. Frannie, thank you for sharing this difficult news. I will be praying for you, Dalton, and Uriah. May the peace of God, which transcends all understanding, guard your hearts and your minds in Christ Jesus.

  4. My Dear Frannie,

    This is difficult news, we all want a healthy little baby. most folks waiting on the new of sex of a baby, will usually say “we don’t care as long as he/she is healthy. Now you know you have a sweet baby boy but with health issues. This is sad because I want you to have that healthy baby. But I am not God, but I know without a doubt that this baby will be loved and cherish perfectly by you and Dalton. That God choose you to have this baby because of HIS wisdom and perfect love for you. There will be prayers said for you and baby Uriah. He is loved already by so many of us because of his sweet mama.

  5. Frannie, your faith and grace you show is inspiring. Your family will remain in our prayers. God is blessing Uriah with a wonderful mother and father. God bless you all. Love and hugs, Lori

  6. I am continuing to pray every day for the three of you my friend. I love you and I am here for you always. I know the Lord is with you, Dalton, and Uriah and I pray for you to have His peace, comfort, and guidance every day. Much love to you my friend.

  7. My heart goes out to you, your husband and family ❤️. They power of prayer is incredible. God is good and even through our darkest trials, He provides what we need. I pray Uriah is all the glory God means him to be. Your faith is astounding and beautiful!

  8. Frannie,
    What difficult news to receive at a time you should be celebrating. But God has a plan for you and for baby Uriah already mapped out. He had a purpose when He chose you to be Uriah’s parents. He has blessed you with an awesome, if heart-breaking, responsibility and He will walk before you every step of the way. I know someone who also used to attend NPBBC that is already walking in those those and would be a wonderful contact for you. If you are interested, message me. With much love and many prayers, Vicki

  9. Frannie, I was so saddened to hear the news about sweet Uriah. May God give you and Dalton strength , endurance and comfort through this difficult time. Mike and I are praying for You , Dalton and sweet Uriah. Love to you

  10. Dear Frannie,

    All though we have not met in person…my husband and I went to school with your Mom…I know that you have a heart for Jesus…we will be praying for you and Uriah…God will not give us more than we can handle with his Grace. Days will be long and nights possibly longer …remember our days on earth are not the goal…trial such as this makes us stronger and desire to be with Jesus. In May our Grandson was diagnosed with a brain tumor, blocking the fluid ..he had a shunt inserted within hours…today he is well…God can and does heal on earth, but in heaven we are all whole …either way if we live for him…he will provide. Take courage…God has a plan!

  11. Oh Frannie … oh Frannie, I don’t know what to say … other than I love you, so very much, and I will keep you and your family foremost in my prayers. I don’t understand why, or how such frightening news could be part of God’s good plan, and I certainly have no advice or solutions to offer – I can only sit down with you here in cyberspace and put my arms around you and let you know that I’m here. I see you. And our Father, El Roi, the God who sees us, sees you too and loves you so very much. I will pray for extra protection against doubt of that truth, against despair, and especially against fear – may the Holy Spirit fight on your behalf and keep your heart safe and hidden in His peace.

    I also rejoice with you that you have “met” your son more clearly this time than before and have even chosen a name! May you treasure the miracle of his kicks and wiggles inside you, and know that he is with you and can feel how deeply he is loved by both of his parents. Praise to God for the creation of such a precious miracle as your baby boy!

    I love you, my friend, I love you and I will remember you in prayer this week – please reach out to me by comment or even by email if you need me.

    Holding tight in hope,
    Vicki

  12. Oh Frannie, reading this just hurt my heart. But know that no matter what he will be loved and happy!!! Prayers for your whole family!!!

  13. Frannie, dear girl,
    Thank you for writing this post so we know how to specifically join you in prayer. May you continue to know the peace of Christ and the love of His people. We love this little one and will pray for wisdom for all involved. Love you!

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