I’ve been torn on writing this for a while, but I find this cannot delay any longer. For those who are only here for the board games and don’t wish to read anything more personal, full disclosure: this is a 100% personal post.
I had planned on writing something lengthy, uplifting, and faith-filled in contrast to the uncertain situation we have found ourselves in right now, but I think conciseness (for a change) is the best approach here.
Tomorrow (September 19th, 2018), our daughter will be born at 37 weeks into my wife’s pregnancy. We have had a really rough pregnancy, with talk our daughter having Down Syndrome (ultimately tested and came back negative), skeletal dysplasia (commonly associated with dwarfism), underdeveloped lungs, and severely enlarged kidneys. The talks have ranged from “she might prove us all wrong and do just fine” to “you may only have hours with her” and everything in between. We’re having a scheduled c-section at a hospital about 90 minutes away from home and are optimistically looking at several weeks or months with her staying there in the Neonatal Intensive Care Unit (NICU).
This uncertainty about what trials we, as a family, may face when she is born has been weighing heavily on our hearts and our minds for several months now. We have a 2-year-old boy (Archer) whose life may also be about to change in ways he can’t expect. All of that uncertainty will end, in one way or another, tomorrow.
If you have provided us with a review copy of a game, I ask for your patience as we try to figure out what our lives will look like going forward. I have a list, and several of them are ready to be reviewed as soon as I have the time to write them and those should appear soon enough. There are others that still need played more before I feel comfortable with a review, and that timeline is something I cannot commit to yet.
But ultimately why I am writing this, and all I am genuinely asking for, are prayers. I believe in God and have a strong faith. It has been tested these past few months and has come out even stronger than it was before. I am firm in my conviction that, no matter God’s plan for our little Elowen, it was according to his plan and we will one day be able to look back and see the reasons for our pain and tears throughout this process.
But as we approach the time where my daughter will come into this world, I am convinced that we cannot have enough people praying for her to be a fighter and to come out strong. I’ve wanted a daughter for so long now, and I pray she will get that chance to grow and be a presence in our home. Here are the messages my wife, Nicole, sent out yesterday regarding Elowen and her conditions:
Had appointments in Iowa city today. Elowen’s kidney’s are bigger than 2 weeks ago so there is still concern there. I am also starting to have excess swelling and higher blood pressure. Not currently having preeclampsia but borderline. They have decided due to Elowen’s stomach size that I should have a c-section so she does not get stuck coming out vaginally. Also due to the blood pressure I am having the c-section will be this Wednesday the 19th which is 37 weeks gestation. Do not know the time yet. They are still unsure about how she will do after birth. I had a steroid shot today to help with her lungs and getting another tomorrow. Lots of prayers needed especially for her when she is born since we do not know what God’s plan is for her life here. Thank you all for your prayers!
Sorry about my short post earlier about the baby. Wanted to get some prayers in. Throughout my pregnancy Elowen has had many medical concerns. Her most pressing concern is she has very enlarged kidney’s. Doctors are concerned on if they are working properly. She may need dialysis or surgery after birth or a kidney transplant later on. Due to the fact that her kidneys are so enlarged, therefore making her stomach enlarged, it is putting a lot of pressure on her lungs, which may cause them not to work well. She also may have a form of skeletal dysplasia (dwarfism.) I was originally going to be induced October 3rd because of all of this but now I have started to develop high blood pressure and swelling. Not yet preeclampsia but borderline. Due to this they have decided to do an c-section on Wednesday the 19th. This is 37 weeks gestation which is not too early but still early, and with her health concerns we are unsure of Elowen’s future. We may be in the NICU for a week or months or she may pass away at birth. I do know, weather you believe it or not, that God is powerful and his power is supernatural. If it is his will he can heal her. It is all up to his plan for her life here though! I ask that we all be calling on his name and that power in the next few days to heal Elowen if it is his will.
I want to thank you, in advance, if you are reading this and you say a prayer or two for Elowen. Whether you pray or not, your sharing of this post is equally appreciated so that it may reach more eyes and receive more prayers than it ever could through my own efforts.
Look for an update, possibly with pictures, a little later this week as we find out how she does and get a better idea of what the next weeks and months have in store for us. Thank you and God bless you for prayers and for sharing. If you have any questions, you can reach out to me directly via email at: firstname.lastname@example.org
Update on 9/19: Elowen was born at 2:51 pm, is 18 inches long and weighs 13 pounds! Most of that weight is from the fluid trapped in her Kidneys. Her stomach is so large! It is scary to see! They plan on draining the kidneys tomorrow and will hopefully have a more accurate weight afterwards. They believe she has a blocked valve in both sides of bladder which has been causing the fluid retention in the kidneys. They are going to see about doing a procedure tomorrow to correct that. No word yet on how the kidneys are functioning.She is currently on a ventilator for breathing so we can not hold her. Might be a few days until they take her off that. They say she is doing so much better than they thought she would with breathing. Hopefully the the kidney drain will help the pressure on lungs and she will breath better. They are not currently feeding her my breast milk but pumping is going well. She does have dwarfism just do not know what kind yet.Do not have more to say right now. Will probably keep to no visitors right now apart from our parents. Thank you all for the prayers! Will update again when we know more!