Monday, May 19, 2014

Even a millimeter can break your heart

We had a doctor's appointment today (one of many in the upcoming weeks). The appointments have been spaced by 2 weeks and this is only the second 'regular' appointment so I am still learning what to expect and how to handle all the information. The challenging part is that in between appointments, although I am constantly thinking about this little guy (who seems to be doing non-stop flips in my bladder region!) and all the challenges he may face, I am busy enough with life that spina bifida isn't as doom and gloom as it once seemed in my eyes. Our life has gone on since Diagnosis day and with some education and information on SB, the outlook isn't as terrifying as we had once viewed it, but when appointment time comes, it is back to the reality that this baby's spine is not formed correctly and he could have some major health complications that he has to deal with. It is a chilling and emotional alarm clock to wake me back up to reality. Today on the ultrasound, his ventricles had increased to 19 and 16 mm, up from 11 and 14 mm. That is so small and minute that it is mind boggling how much it shook me. I guess, I was in more denial than I had thought. I talk a big game when discussing our little guy with everyone, like I am fine and I am calm and feel good about what the prognosis is and will be able to deal with whatever we need to, but today when those little millimeters had increased, I felt myself losing it. I was still hanging onto some type of ridiculous hope that everything was fine and his symptoms were going to be minimal and surgeries, like shunts, might not be necessary. For some reason though, with the increase in those darn ventricles, it was like my reality check that this is in fact happening and it might not be a best case scenario for him/us. Which leads me to even more emotions. I feel guilt for being scared of the future. This isn't about me, it is about our darling little boy and HIS life and HIS challenges. The fact that it scares me and I am fearful of how to parent a baby that will need me to be more than I have ever had to be, makes me feel selfish. The number of times I have used the pronoun I in this post is worrisome to me. A good parent does not make their children's problems about themselves. They put their kids first without a thought....Can I do that correctly? I can't even fully accept yet what his diagnosis might be. I am being unrealistically optimistic and that probably isn't a good start to being the mom he needs.

One of the wonderful moms in a spina bifida parent group had a great quote. 'Having a child with disabilities does not require a strong parent, it creates one.' I like that a lot and am hoping that it is true.

Another little anecdote that I have fixated onto is a metaphor about grieving: Having a baby with special needs is like planning a vacation. You have been planning a vacation to Italy. You bought books, read up on all the hot spots and cool things to do. You may have even already been to Italy and loved it so much that you are feeling ready and excited to expand on your last trip. You are very prepared and excited with images in your head of how much fun you will have and the memories you will make. You get on the plane, but it takes you to Holland. You didn't plan for this, you are now stuck in Holland and there is nothing you can do. You aren't prepared and you are wishing you had been able to go to Italy. You are hearing from your friends and those around you how much fun they had or are having in Italy. They are posting pictures of being in Italy and are having the time of their life doing strictly Italian things that you can't do or find in Holland. You are happy for them, but you are sad to not be in Italy. The problem is that Holland is also beautiful, but in ways you don't know about because you weren't prepared. It is ok to be sad about missing Italy, but if you spend too much time grieving the missed trip, you won't be able to see the beauty in Holland. Don't miss what's around you b/c you are held up on what you had in mind. Holland will have it's own beauty and memories that you can't even imagine.

Thursday, May 15, 2014

Starting out

Since we found out that baby boy #3 has an open neural tube defect, we have been dealing with many emotions. Finding an outlet for these emotions has been challenging, so I started writing
many of my feelings down. This helped some, but the wonderful group of moms of kids with Spina Bifida that I joined encouraged me to blog about it. This will help communicate my thoughts on everything with those who would like to know as well as keep those close to us in the loop with updates. So let's see how this goes....

We found out on March 12th that our little guy has spina bifida. This was easily the worst day of my life, I think I will forever remember the details of that day pretty vividly and I now feel that my life can be broken into two parts, before Diagnosis Day and after. It has been a bit of a whirlwind since then, our moments have ranged from feeling hopeless despair like it is all a bad dream to hopeful and inspirational from those around us and those that I have met. The major cause of pain, for me, has been that this is my fault. I have had countless pep talks from doctors and other moms that this isn't my fault and these things happen, but there is nothing that anyone can say that will change my mind from the fact that this is my fault. We weren't trying to get pregnant, I was not taking the pre-natal vitamins which have the necessary folic acid in them that can help reduce the likelihood of Spina Bifida.  I was very sick at the beginning and couldn't eat for days at a time, I had to go on medicine to be able to even drink water...could this have caused it? I know spina bifida is determined very early in the pregnancy (first 3 or 4 weeks), I didn't even know I was pregnant then, could I have done something during that time to cause this? Even though I have come across those that took the vitamins, planned for pregnancy, did it all 'by the book' and still had babies with spina bifida, I will always have this hanging over me that I did something. It is my job to grow a healthy baby and I was unable to do this for my son this time.

After finding out at our 20 week ultrasound about the baby's diagnosis, we have been run through many more test (MRI's, Fetal Echo, Ultrasound, etc.) and we now know that the lesion (the opening in the spinal cord) starts around L3/L4 (the 3rd or 4th lumbar vertebrate) and goes all the way down the spine. The frustrating part about the pregnancy phase of this diagnosis, is there are no answers for what any of this means for baby boy. The damage to the nerves from the amniotic fluid is completely random and affects each individual differently. So he could be paralyzed, or he may walk. He could have no feeling from hips down or maybe no feeling in just his feet. His brain could be affected by the shifting down the spinal cord (Chiari II) and need a shunt or it could have no symptoms. He could have no bowel/bladder control. I have heard the phrase 'wait and see' more times than I can count. I have endless questions that no one can seem to answer and it is hard to deal with that. What will our little guy go through? How can we best be prepared to help him and give him the best chance at achieving all he wants to achieve?

As I have explored the spina bifida community, I have been amazed by the strength and tenacity of so many of the parents and caregivers of these young little fighters. It seems it takes a special kind of parent to have a child with special needs. You must learn to fight for your kiddo and be their advocate. You have to be proactive, but knowledgeable. Patient, but persistent. I find myself doubting that I have these qualities in me. My little guy deserves someone to fight for what is best for him and to learn everything they can about what he is going through and might face in the future. How do I find this strength? How do I channel an inner warrior mom that can help my little guy? These are some of the thoughts that keep me up at night. However, in the same stream of consciousness, I remind myself that this is spina bifida, it is not cancer, it is not terminal (the vast majority of the time). He will be expected to have a long life given proper medical care. He will get to have a life and be loved by an amazing family. Although he will have different struggles than our other two dudes, he will still be a little boy. He is a child that happens to have spina bifida, he is not spina bifida. I don't like the word disability for many reasons....he will have his own Flach-ability!!