I realize that it has been a very long time since I have even been remotely active on my blog. More and more complicated and yet interesting things keep coming up for our family.
In May we found out our youngest daughter will be affected by the same disease that killed her sister just two short years ago. There's no way to not be a little upset about it. Knowing that our genetic odds were 25% each pregnancy, I guess we thought we might not have another baby with SMA this time. But that isn't what happened.
After the amnio, it took a while to tell friends and family of the diagnosis. It took even longer for me to be able to talk about it, and explain things to people when they asked questions. The truth is, we are absolutely thrilled God has blessed us with another little girl to love and raise. Despite the hardships we know are coming, we can't help but look forward to meeting this little creature and see just how much love she adds to our family.
For months, I have basically just shoved all of this: my feelings, fears, hopes and etc. in a tiny little box in the corner and never really thought about it. Our minds tend tot ry to protect us from trauma, so I have essentially been avoiding reality. I know it isn't ideal, nor is it something that will work long term, but for now it is how I am surviving. I can't keep thinking of the what ifs because I know a lot of them are terrifying. There really is only so much we can know before delivery, and most of it is already out there.
But now, my due date is 6 weeks away and baby could be as few as two weeks away. The reality I have been avoiding will soon be staring me right in the face, forcing me to deal with it. I have done most of the practical things that I can do to prepare for the baby's arrival. We haven't purchased a crib yet because our current house isn't really big enough for it. Also, she won't be able to sleep in her own room for a while anyway. So for now, we have a bassinet that will work for that purpose. In addition, we have not purchased a car seat because at this point we're not sure if the baby will be able to tolerate a regular car seat. Amelia needed a car bed, and having this gave us so much peace of mind because otherwise every time she was in the car seat, she had respiratory distress.
We have a plan in place with our Maternal Fetal Medicine team as well as Neurology and the Neonatal team. The neonatal team will be on standby at delivery and it is likely the baby will need to be in the Neonatal Intensive Care Unit (NICU) for at least a couple of days. This is the best course of action because infants with SMA can have breathing and feeding issues very soon after birth. Our neurologist will also be paged when I go into labor so that they can start working on getting insurance to approve the drug called Spinraza, which is the medication that is being used to slow the progression of SMA. The goal is to start baby on Spinraza somewhere between 4-6 weeks of age. An earlier start generally means a better outcome, so we are pleased with this plan. This is one of the reasons we agreed to prenatal testing so that we could get prepared earlier rather than later.
Of course, all of this is complicated by the fact that we have been trying to sell our house for nearly a year, and in that time we have received one offer. The offer we received is nowhere near what we would like it to be, but we are not really in a position to reject it. Justin and I are both working half an hour away from where we live, so we are spending more than $200 a month on gas just to get to and from work. In addition, Justin's job requires on call hours, especially in the winter months when there are snow storms. He would have to be at the facility by 4 AM on those days, and the commute would be absolutely horrendous if we stayed here. So we have largely decided that we need to let the house go, and that moving is the best option for our family. Unfortunately we don't know yet what that looks like. Everything is really up in the air right now, which is not helping the anxiety I am feeling.
We are very much aware we need help with caring for both of our daughters, and will likely need some help financially as we will be making many trips to Sioux Falls for baby's treatments and ongoing care. I feel awful about the fact that we will need this help, but we really can't be too proud in this circumstance. Most likely I will be starting a Go Fund Me campaign so that people who are able to contribute can do so, but do not feel obligated to.
I ask that anyone reading this will pray for our family. We are going through some very difficult times and there is more to come. This will not be an easy journey and we are very much aware of that. However, we will do whatever is needed to ensure that our family is taken care of. We trust that God will help us through this time, as He has always done in the past.
I am looking at keeping this blog updated more consistently and starting a You Tube channel as well. Having a child with SMA on Spinraza is something that I think people with find interesting, and I also intend to raise more awareness so that someday this awful disease will have a cure. We are still doing everything we can to honor Millie's memory, and feel that this awareness raising is something she would want us to do.
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