I am trying to act normal... do the normal things I usually do. Clean, cook, do my homework, play with the kids, etc. But this one realization keeps creeping in. I could actually lose a child. Everyone says things like "Don't think that way" or "That's too morbid, think of something else", and I get that, but that doesn't mean it's something I won't think about right now, simply because it is a possibility.
I have seen it on TV, I have heard of friends of friends or total strangers losing their children, I watched my grandmother bury her adult children, but I'd be lying if I said it wasn't different.
It's like when you hear people say "You don't know true love until you become a parent." It's true. You love people, sure, but I never loved THAT WAY until I had babies, created life from my life, and knew that nothing could ever fade or replace it. And now, to even realize that I could lose a baby, that it's even a possibility to lose one of the lives that I created from scratch from my own life, just sounds like one of the most ridiculous things I have ever heard. Like I said, I know it happens... we've all seen it, heard about it, maybe even watched others go through it, but when there's a real chance it could happen to you, it just sounds impossible or made up. Ridiculous!
I'm taking comfort in the fact that losing her is only one of the millions of possibilities, that there are so many other ways this could go. It's just, to think that losing a child is even a possibility is what seems so out of this world to any parent, I would imagine.
At least I can focus on the other possibilities, though. I have been researching how to breastfeed a baby that is mainly confined to an incubator and must stay in the NICU. It will be difficult, but it is not impossible. She is going to need every advantage she can get, especially those nutrients and development-boosting powers that breast milk has and formula lacks, so if learning how to breastfeed in a way that I have never done before is part of that, I am prepared to learn!
So even though losing her is a possibility, one that is impossible to wrap my head around or not think about at all, I am preparing myself for all the other possibilities: feeding her, holding her, seeing her, talking to her, and most of all, loving her.
Thursday, January 31, 2013
Wednesday, January 30, 2013
Awaiting the Specialists
With a week and a half wait between finding out our daughter's diagnosis, and being able to meet with specialists to get more answers, research, praying, and spending time with loved ones has been the best ways to fill my time. I am very anxious to get answers, understand more about her conditions, and begin the long road of establishing an immediate and long-term game plan to give her the best life we possibly can.
While all of this is a good way to try and fill the time, the shock factor of this situation is not fading, nor do I think it ever will. I find myself sitting here, thinking I am fine, thinking my thoughts are elsewhere, only to be proven drastically wrong.
Yesterday morning, Tuesday, January 29th, 2013, I was doing just that; sitting on my bed, thinking my mind was elsewhere, getting ready to log onto Facebook or do more research, when BAM! I was hit with another massive flood of emotion. I started crying uncontrollably, my nose started bleeding, and I started hyperventilating. All I could do was call my sister, Tammy, and force out the words "Tell me to breath!" She talked me down, she reassured me, she got me breathing again... She reminded me of the loving and supportive family I am blessed to have, that we all will be here for this beautiful baby girl, that no matter what happens, we will be okay. After this break down, I was able to gather my thoughts once again, and continue to think clearly while researching.
I have been informed that the specialists are going to want to perform an amniocentesis. This is where they use a needle through your belly, enter the womb, and obtain a sample of the baby's blood. Joe and I have already decided to refuse this procedure because it brings unnecessary risks to the baby. The point of the amniocentesis would be to confirm the Spina Bifida; however, the Spina BIfida has already been confirmed, as all of her defects are clearly seen on a low resolution sonogram. Having an amniocentesis comes with many risks, one of those risks includes killing the baby.
One thing I am preparing myself to do is knowing when to put my foot down with decision making. We are going to have to be advocates for her best interests because, just like with any other baby, she cannot advocate for herself. Sometimes, this means telling the specialists, nurses, doctors, surgeons, etc. "No." Sometimes, saying "NO" is the best thing you can do. If it feels wrong, if you're unsure, if your gut is telling you otherwise, find out why. Chances are, there is a reason your instincts or God or your baby is speaking to you in a way you might not be able to understand, but I know it is my job to figure it out.
I may have more to say before my meeting with the specialists on Wednesday, or I may wait until after I meet with them to post more. Either way, I'll be sure to give all information I can, and if my experience can help someone else, in any way, I will have achieved something.
Doing Research
Doing research is part of my daily life, as I am a college student majoring in psychology. I also learned after my first child, that if you want to know the whole truth, you cannot always trust doctors or medical professionals to give it to you, so you have to find it on your own. I research many things on a very regular basis, so I am used to keeping an open mind about information I find. Regardless of how much research I am used to doing, or how detached from the information I am used to being, or how open minded about the information I have learned to become, nothing can prepare you for looking at your child's possible outcomes over and over again.
I will not discourage other people from doing their research about medical problems with their children, but I will be honest when I say that it is not easy to digest, and even that is a wildly understated statement.
One of the inevitable experiences of learning accurate information about your child's condition(s) is having to see morbidity rates, worst case scenarios, life-long impairments, struggles they will face, pain they will be in, etc. etc. etc. This terrible list of things you will see goes on and on and on.
You will also see inspiring and miraculous stories. You will see the best cast scenarios, and the miracle cases, and hear people's inspiring stories. It brings light to the situation, but at the same time, it is a reminder that you can have no expectations. To expect the worst, or to expect the best is setting yourself up for failure. With the complications my daughter has, she could either lead a perfectly normal life, her life could be ended before it barely begins, or she could be in a condition of one or more of the millions of possibilities in between. Joe and I have already accepted the fact that expectations are not things we can afford to have, and to us, the best case scenario is that she survives.
So again, I will not discourage anyone else from doing research about a medical condition. But I will stress the necessity of not getting hung up on any of the results/stories that you find. Do not dwell on the worst case, do not dwell on the best case. Look at what you find as only possibilities, but not expectations. Prepare yourselves for any and all of the possibilities, but expect nothing. It is impossible to be detached, but remind yourself that every case is different. Even when the exact complications are present, every person and every case is different. Expect nothing.
I will not discourage other people from doing their research about medical problems with their children, but I will be honest when I say that it is not easy to digest, and even that is a wildly understated statement.
One of the inevitable experiences of learning accurate information about your child's condition(s) is having to see morbidity rates, worst case scenarios, life-long impairments, struggles they will face, pain they will be in, etc. etc. etc. This terrible list of things you will see goes on and on and on.
You will also see inspiring and miraculous stories. You will see the best cast scenarios, and the miracle cases, and hear people's inspiring stories. It brings light to the situation, but at the same time, it is a reminder that you can have no expectations. To expect the worst, or to expect the best is setting yourself up for failure. With the complications my daughter has, she could either lead a perfectly normal life, her life could be ended before it barely begins, or she could be in a condition of one or more of the millions of possibilities in between. Joe and I have already accepted the fact that expectations are not things we can afford to have, and to us, the best case scenario is that she survives.
So again, I will not discourage anyone else from doing research about a medical condition. But I will stress the necessity of not getting hung up on any of the results/stories that you find. Do not dwell on the worst case, do not dwell on the best case. Look at what you find as only possibilities, but not expectations. Prepare yourselves for any and all of the possibilities, but expect nothing. It is impossible to be detached, but remind yourself that every case is different. Even when the exact complications are present, every person and every case is different. Expect nothing.
Letting It Sink In
Once the OB left, Joe and I took a moment, and then quite a few more, to gather ourselves, support each other, and tell each other it will be okay. We held each other, talked about the wonderful life we intend on giving her, prepared to leave, and then stopped and held each other some more. We repeated this a few times, and finally left the room to obtain the information from the secretary about the specialists we would be meeting with in Pittsburgh. She informed me they would be calling me to set up our appointment.
As we were leaving the hospital we started making phone calls to family and friends to inform them of the news, which was a process that would last for the next couple of days. Each time I made that phone call, it never got easier to say the words out loud. I spent the rest of that day on the phone with loved ones, secretaries from Pittsburgh, and health insurance representatives.
I kept thinking that while I was on the phone making professional phone calls, I would be able to control my emotions, but as soon as I got to the word "baby" or "Spina Bifida" I broke down every time. It is an uncomfortable situation, to be experiencing your most vulnerable moments while on the phone with a stranger who is just trying to do their job. To repeatedly sob to someone you will probably never meet and have never met before about the most life changing event you have ever endured. No part of me blames them for being awkward, or not knowing what to say; after all, what do you say?
What seemed like an endless list of phone calls finally wrapped up once business hours for the day ended. This is when I started hitting the Internet to do research and find out as much as I possibly could before the Pittsburgh appointment, which was now scheduled for Wednesday, February 6th, 2013.
As we were leaving the hospital we started making phone calls to family and friends to inform them of the news, which was a process that would last for the next couple of days. Each time I made that phone call, it never got easier to say the words out loud. I spent the rest of that day on the phone with loved ones, secretaries from Pittsburgh, and health insurance representatives.
I kept thinking that while I was on the phone making professional phone calls, I would be able to control my emotions, but as soon as I got to the word "baby" or "Spina Bifida" I broke down every time. It is an uncomfortable situation, to be experiencing your most vulnerable moments while on the phone with a stranger who is just trying to do their job. To repeatedly sob to someone you will probably never meet and have never met before about the most life changing event you have ever endured. No part of me blames them for being awkward, or not knowing what to say; after all, what do you say?
What seemed like an endless list of phone calls finally wrapped up once business hours for the day ended. This is when I started hitting the Internet to do research and find out as much as I possibly could before the Pittsburgh appointment, which was now scheduled for Wednesday, February 6th, 2013.
The Diagnosis
A nurse called us back, and we went into an exam room. The nurse informed us that our OB would be in any minute to talk to us. In a matter of minutes, my OB came in, sat down, put her hand on my leg, and began the discussion.
As she was speaking, my mind was racing, but there was little I could say. She kept asking if I had questions, but one of the only words I could form was "okay." I looked at the floor and cried and she explained our daughter's conditions.
Our unborn baby is confirmed to have Spina Bifida. This is called an "open neural tube" which occurs when the spine does not form together during development. A gap in the spine is created, which often, and in our case has, led to other complications.
She also has developed a Myelomeningocele, which is the most severe form of Spina Bifida, and unfortunately, the most common. A Myelomeningocele is when the spinal tissue and spinal cord come out of the gap in the spine, and entangle themselves outside of the body. My OB informed us that our daughter's defect is "substantially large" and there is little chance that she will have function of her legs.
But wait, there's more. Because of her spine forming improperly, she also developed what is called a Chiari Malformation. This is when the bottom of the brain "leaks" into the spinal cavity where spinal fluid would normally be able to flow freely. This also caused Hydrocephalus, which is a build up of spinal fluid in the cranium around the brain. The spinal complications also caused a defect of her feet where one is notably smaller than the other.
The open neural tube and Myelomeningocele are located at the bottom of her spine, which may decrease the possibility of her being completely paralyzed from the waste down, but it also increases her chance of having her bladder, bowels, and sexual organs compromised.
Each one of these complications has the potential to be surgically corrected, and she could walk away to lead a fairly normal life; or each one of these complications has the potential to be fatal.
The OB informed us that our case would be transferred to Pittsburgh, PA., told us to use the room for as much time as we needed, and left.
As she was speaking, my mind was racing, but there was little I could say. She kept asking if I had questions, but one of the only words I could form was "okay." I looked at the floor and cried and she explained our daughter's conditions.
Our unborn baby is confirmed to have Spina Bifida. This is called an "open neural tube" which occurs when the spine does not form together during development. A gap in the spine is created, which often, and in our case has, led to other complications.
She also has developed a Myelomeningocele, which is the most severe form of Spina Bifida, and unfortunately, the most common. A Myelomeningocele is when the spinal tissue and spinal cord come out of the gap in the spine, and entangle themselves outside of the body. My OB informed us that our daughter's defect is "substantially large" and there is little chance that she will have function of her legs.
But wait, there's more. Because of her spine forming improperly, she also developed what is called a Chiari Malformation. This is when the bottom of the brain "leaks" into the spinal cavity where spinal fluid would normally be able to flow freely. This also caused Hydrocephalus, which is a build up of spinal fluid in the cranium around the brain. The spinal complications also caused a defect of her feet where one is notably smaller than the other.
The open neural tube and Myelomeningocele are located at the bottom of her spine, which may decrease the possibility of her being completely paralyzed from the waste down, but it also increases her chance of having her bladder, bowels, and sexual organs compromised.
Each one of these complications has the potential to be surgically corrected, and she could walk away to lead a fairly normal life; or each one of these complications has the potential to be fatal.
The OB informed us that our case would be transferred to Pittsburgh, PA., told us to use the room for as much time as we needed, and left.
Waiting for News
The weekend of waiting to find out what was revealed on the sonogram was excruciating. I made many phone calls to my sister, Tammy, to discuss what was possibly going on. My mind went to spina bifida because of the way the stenographer focused on the spine during the sonogram, but I also thought of down syndrome because during our pregnancy with our son, we were told he had an elevated chance of having down syndrome. Dustin turned out not to have down syndrome, and I always thought it was just a fluke until this time. I then started thinking that maybe Joe and I carried genetic markers that created this outcome. These were only a few of the millions of places my mind went during the weekend of waiting.
Monday morning arrived, and as Joe and I headed to the OB's office, I was anxious to hear what was going on, but at the same time, wanted to run away, as far as I could, and never look back. The mental and emotional struggle between needing to know what is going on with your child, vs. not wanting to have your worst fears confirmed is an internal battle that is difficult to explain.
Nevertheless, Joe and I checked in with the secretary and waited to be called.
Unknown Panic
On Friday, January 25th, 2013, Joe and I went in for what we thought would be a routine ultrasound. Our only hopes/expectations were to possibly get some good pictures and find out the gender. As I laid there, we held hands, watching the screen, captivated by our little one. A worrisome alarm went off in my head as I noticed the stenographer was taking a lot of pictures of our baby's spine. That worry soon vanished in replacement of happiness because our stenographer informed us that we were having a little girl. I did not think about the alarms that went off in my head again until the sonogram was finished. The stenographer then asked us to wait while she rushed the results to a doctor. She tried her best to act as though this was routine, but having two previous children, I knew this was not how a routine ultrasound played out.
10-15 minutes later, the stenographer returned, still trying not to alarm us, but informed us that a doctor had seen the results and we were to schedule an appointment with our OB/GYN for first thing Monday morning. Joe and I went out to our car, and I called my OB's office. My OB's secretary said that I needed to come in immediately on Monday as soon as the office opened so my OB could speak with me. I asked her what was wrong, and she said she had no information, only that I needed to speak with my doctor about the results of the sonogram. When I hung up the phone, panic set in. As a parent, the last thing you want is to know that something is wrong with your child, and there is nothing you can do. All we could do was wait. Wait an entire weekend to discover what was wrong. This was definitely a weekend of hell.
10-15 minutes later, the stenographer returned, still trying not to alarm us, but informed us that a doctor had seen the results and we were to schedule an appointment with our OB/GYN for first thing Monday morning. Joe and I went out to our car, and I called my OB's office. My OB's secretary said that I needed to come in immediately on Monday as soon as the office opened so my OB could speak with me. I asked her what was wrong, and she said she had no information, only that I needed to speak with my doctor about the results of the sonogram. When I hung up the phone, panic set in. As a parent, the last thing you want is to know that something is wrong with your child, and there is nothing you can do. All we could do was wait. Wait an entire weekend to discover what was wrong. This was definitely a weekend of hell.
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