There are only a few days in our lives when we wake up and know your life is going to be changed forever. When we woke up yesterday Lance and I both knew that the information we were going to receive would more than likely be very grim and change our lives as we knew it. We were correct.
We went over to the hospital at two to meet with the Neurology Team and the NICU team. I knew it wasn't a good sign the other specialities weren't there because it meant the Neurology findings were going to overshadow anything else that might affect Seren's life. We were told that Seren had a random gene mutation that affected the development of several major organs. Parts of her brain are formed improperly. This means Seren will be severely mentally and cognitively impaired. We know she cannot see and we are trying to determine if she can hear. We have not been given hope that she will make much progress.
Her heart, kidneys and tethered spine may all require surgical intervention in the future but there is nothing that needs to be done immediately.
There is nothing keeping her in the NICU but her inability to eat. Her temperature is improving. In the next few days a feeding tube will likely be inserted and we will be trained on how to use it. Seren will need 24/7 nursing care and we are trying to find the best way to obtain that for her. Thank you for your prayers as we try to navigate these difficult waters and try to maintain stability for Grayson as we give Seren the attention she needs.
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The Fredette's have been praying for you and your family and we admire your strength during this time. Please know that we are just around the corner if you need anything. Little Seren is lucky to have such wonderful parents who care so deeply for her.
ReplyDeleteI'm so sorry to hear that the news was so grim. I can't imagine what you are going through in dealing with this latest diagnosis but I know that your faith in God and your love for Seren will see you through. I pray for Seren everyday and for you and your family as well. God has chosen you to be Seren's parents, he knows how wonderful you are and that you will give her the best life possible. I'm here if you ever want/need to talk. Sending much love, Maureen
ReplyDeleteJennifer, Lance and Grayson- I am just now hearing of all this, since the updates had been sent to my old email address. I don't quite know what to say except that Chris and I are saying a prayer for you, Greyson and Seren right now, as I type this. Love to you all and we are here for you if you need anything. Tara
ReplyDeleteDear, dear Jennifer and Lance, I just learned today of your situation with Seren (such a beautiful name). Our hearts are so heavy for you all, but be assured of our prayers for all of you to our gracious Heavenly Father. May HE grant you peace, comfort, strength, and wisdom as you go through this time. If we can be of any assistance in any way do not hesitate to call or let us know. We love you! Terrie and Steve
ReplyDeleteJennifer - you may not remember me - my name is Barbara Shelor and I "still" work at the church office (Shenandoah Baptist)... I want you to know of my continued prayers for your entire family. I forwarded this to my son, David Shelor and his wife and they too are praying.
ReplyDeleteGod bless you,
Barbara Shelor