Ah…my resolve not to google David’s condition lasted less than a week.
We actually had a pediatrician appointment yesterday, and I was able to hear a little bit more about what’s going on with David’s back. I found much of what our doctor said very comforting. The condition is called “tethered cord syndrome,” and with a successful surgery we can expect David to run, jump, and skate just as well as his big brother. The timing depends on the opinion of the neurosurgeon, but we may be looking at surgery in the next couple of years, not the next couple of months. I’m sure that will still be hard when the time comes, but for now I am glad that the timetable is longer than I thought. The doctor really seemed positive about everything considering we were worried about a more devastating diagnosis (for instance, a spot that left neural tissue exposed).
I didn’t feel very good after googling “tethered cord syndrome,” though. I knew I should have held off on that one. I read all the complications that can happen when the problem isn’t treated early, which left me wondering if it really would be okay to wait a couple of years on the surgery (glad we’ll be seeing a neurologist to help with that one and that I don’t have to depend on the wisdom of the interwebs). I also read that this problem is considered a neural tube defect related to spina bifida, which of course left me searching my brain to see if I remembered to take my prenatal vitamins during those first few weeks of pregnancy (i.e. — is this my fault?).
I really won’t have any more answers until our appointment at the children’s hospital in February. Until then, I am trying to choose faith over fear and count the many blessings we do have in this situation. Thanks for your prayers.
P.S. — We did find out at the pediatrician appointment that David is gaining weight really well; I am so grateful for that!
It isn’t your fault. First off, know that. Things happen that just can’t be helped and beating yourself up won’t do anyone any good at all.
I know that it rocks your world to have all this change thrown at it at once, but it really will turn out okay in the end.
The best advice I can give you as an eternal patient with multiple specialists is this: arm yourself with knowledge and be prepared to be the best advocate for David. Doctors now are so fragmented in their knowledge that it takes a good patient (or patient’s support team) to keep the gaps filled in.
Also, do you know Rachel Walden from Women’s Health News? She’s a Medical librarian and a wizard of help for you when you need knowledge and layman’s translations of the knowledge you’ve found.
Kat is right – IT IS NOT YOUR FAULT. No one could have taken better care to have a healthy baby! No one. No one is perfect in every moment of every day… you may have missed a day or two of vitamins (for example) – that is not going to cause this. NOT YOUR FAULT.
I also agree with Kat that being able to ask intelligent, informed questions will help David to get the best med care. Also getting 2nd and 3rd opinons from docs not affliiated in anyway with the first doctors helps. Drs deal with so many patients and so many areas of concerns, you will have one little boy and his issues to deal with as you research and think of questions to ask. David could not have a more skilled or caring advocate. you are a research master! But his care and well being is not all on you – you are the mommy – not a medical expert. So research and ask questions…but don’t stress. Don’t fear. Easy to say, I know. Pray, research, and talk with the experts. Know you can vent on me and others. … And more “Cast all your cares upon Him, for He Cares for you” I Peter 5:7. We love you and are praying.
Kaye N
NOT YOUR FAULT! What is your fault is that fact that baby David made it to 39 freakin’ weeks! I was thinking about how incredible you are the other day…your dedication made it possible for David literally to survive! What a great mama!
But back to the tethered cord syndrome…I have friends whose daughter had it as well. I think she had surgery around 4 or 5. I’ll “suggest” you to each other on facebook in case you want to connect with the mom.
And, hey, one more reason to love the March of Dimes, right? I’ll put you on my call list. 😉
Love ya, sis.
Of course it’s not your fault. Sometimes things just happen in this world and there is nothing you or I can do about it.
We are so grateful for all the patience, pain and perseverance you went through to bring David into this world. You could not have been a better mother for those critical nine months. I dare anyone to tell me there has ever been anyone more conscientious or careful than you were for that time (and are being still).
I feel confident that this will work out just fine and David will be challenging Ian at the blue line before you know it!
Surgery is scary, but there are some really good specialists who know how to take care of this and will be on your team.
I’m sorry you are having to deal with the inevitable false guilt and fears while you are so tired and worn out, but that will get better too.
In the mean time we will pray and wait for God to provide the right skilled surgeon and/or others to be His hands and bring about a permanent healing.
Thanks for the encouragement, everybody. I don’t really think it’s my fault, but that’s one of those thoughts that occasionally comes unbidden late at night.
Nancy, I should have known you’d have a connection to someone in a similar situation. You definitely have the perfect job. 🙂
squish! I’m too fried to say the right words, but I love you and all will be well. His plans work together for our good!