Today we got to see a bit of light at the end of this long tunnel we are traveling down. The hospital called with the preliminary results of the amniocentesis and there are no signs of chromosomal defects. As far as the full results, which include the confirmation of the AFP hormone causing the neural tube defect won’t be known until next week. From what we saw in the ultrasound we know without doubt that the baby does have a neural tube defect, however, what we don’t know is how many other complications it may be faced with so we now await all final results. Thus far though this is a very good sign and hopefully will give us the best case scenario for the not so great situation we’ve been put it.
I admit the last day has really created not only a lot of emotions but at this point the exhaustion has set in and it’s really tough because no matter how tired I am my mind is constantly moving and has a tough time resting as I have so many thoughts racing through my mind. One thing I have sat and thought about, which Jason and I even discussed yesterday, was how we move forward and what we do if we get worse news than what we have thus far. We are learning a lot more each day about spina bifida and getting to see the experiences shared of other families who are enduring what our baby must face, however, we are frightful of the worst. I know this sounds incredibly awful and I suppose I may even offend some of you but the emotions I feel I know are very real for any parent who is told their child may be born with significant issues. Part of me truly hopes that if God really truly thinks that our child and our family are to endure so much and if my child is so challenged that it has no possibility of a life worth living that it go ahead and take this baby to heaven where it may be spared all the pain and heartache the world would bring. I have been through so many loses and even have sat beside many families as an NILMDTS photographer as several have been faced with this same decision. And it takes an immense amount of bravery to take a child off of life support or give in to having the baby much earlier than might ever give it a possibility of living. This is not what I want but I fear the worst so badly and I pray God is listening because the baby and my family do not deserve any more pain. But I have also recognized that this baby is special, in fact so very special that I have sensed there’d be something…I wasn’t sure what, but I sensed something would make it far different than the “ordinary”. I hold onto so much hope, and as I begin to think of my own neice who was born last year with Down’s syndrome, I am reminded of all the hope we have for this little one. And though I know many of you may be moved by these thoughts that have certainly crossed our minds…I pray you all know that all Jason and I have ever wanted was to have a baby who is healthy and has a possibility at living a life where it won’t need such serious medical attention for the remainder of it’s life. We know there will be many concerns, even with mild cases, but I suppose after we’ve seen Jason’s father last year on life support in the final moments before his death, we just never would want anything so serious that we wouldn’t be able to give our child the best…because that type of life is not anything anyone should ever have to live.
Tomorrow morning we have an appointment with the genetic counselor at the hospital. We are certain this will help not only prepare us but hopefully help us better understand the scope of what we are dealing with and what we may have to worry about after all the amnio results are in. The doctor informed us yesterday also that we should expect several meetings like these to prepare us for all these things that normal healthy babies don’t have to go through, like scheduling time to meet with the pediatric neurosurgeons as we are closer to term so that we will know what exactly to expect in the moments and days after the baby is born. There is no avoiding that the baby will need surgery and possibly more than one and may deal with infections or other side effects from this and I’ve been learning the days and week after birth are a mixture of uplifting moment of hope and trying moments where the baby may be challenged tremendously to fight for its life.
That’s the most recent update…hope it helps you all continue to feel updated on what the days ahead hold for us. Now I must finally try to find a way to rest…Lord knows I am exhausted — now if only he would allow my mind to stop racing with thoughts so I may rest well enough to fully focus and function.
by Amanda Kern
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