Saturday, August 11, 2012

On Wednesday we took Mo to see a SIDS specialist at Children's Hospital.  It was an appointment recommended by a lead physician at the hospital who reviewed Max's file.  I wasn't sure what the point was honestly because the fact about SIDS is that doctors are unable to predict which babies will die.  The babies that die of SIDS are healthy babies.  So, what was this SIDS specialist going to be able to tell us?  Also, and I still don't understand this one - how can someone be a specialist in something that nobody really knows anything about.  But, we took Mo down there anyway because we are committed to doing everything we can to ensure his health.  There isn't much to tell.  The doctor checked Mo's reflexes, listened to his heart, pushed on his belly a little and then told us about the "Back to Sleep" campaign and the other stuff we already know about SIDS (all of the inconclusive stuff that "seems" to lower the SIDS risk, that we already did with Max, that didn't make a difference in saving his life).  Ted and I agreed that the appointment was a waste of time BUT something we had to do.

The next day, we saw Mo's pediatrician.  She gave him a regular newborn check up.  She asked if we had any questions or concerns - we didn't really.  I asked her about vaccinations.  I told her that we planned on vaccinating but wanted to space the shots out.  She kind of laughed a little and told us that there is nothing that shows that vaccinations cause SIDS (or autism or anything else).  Fine, regardless, we want to space them out.  I am not sure why it is so hard to understand that my child died and so, therefore, I am a CAUTIOUS mother.  I was cautious with Max too so any neurosis I had to begin with have been amplified.  This is a VERY special little boy!  Our whole lives depend on him.  Ted thinks she was just saying that because that is her script.  Also, what I interpreted as a little laugh, he thought was merely her being "smiley".  I take things personally (probably too personally most of the time).  I also told her that next week, we are taking Mo to a GI specialist to talk about his liver.  Ideally, I would like to have it checked throughout his first year to ensure (if possible) that he hasn't developed a fatty liver.  I had called her a couple of months ago for a referral and she said that she would talk to the other doctors in her practice and get back to me. She never did.  The doctor we are seeing was referred by the physician at Children's Hospital who reviewed Max's file.  When I brought it up to her she said that she and the geneticist had spoken and thought it wasn't a good idea because they were worried that Mo might develop a complex - that we would treat him like a sick child without any cause for believing he is sick.  Ted and I have no intention of treating Mo like he is sick.  We would like to rule out any issues that could have caused Max's death.  I honestly don't see why that is so hard to understand.  It just seems like they are working against us, even if they might have the best intentions in the world. Ted doesn't agree.  He thinks that they are just bringing up possible issues that might arise.  But I honestly don't understand why they didn't just recommend a hepatologist/GI specialist to us.  Why did I have to go out on my own to find one?

All I want to do is rule out anything that could cause this boy harm.  If I had had that opportunity with Max, he might still be here today.  He might not.  I have no way of knowing...since I STILL DON'T KNOW WHY MY BABY DIED!  Morris is probably a perfectly healthy boy in every way but wouldn't you want to make sure, after losing a child, that his little brother didn't have anything wrong with him that you might not be able to see?  Also, he is only 3 weeks old!  I am not that worried at this stage about his developing a complex.  In fact, now is the very best time to worry about him without worrying that it will affect his psyche.  The complex I might be giving him at 3 weeks old does not keep me up at night.  Ted and I are on the same page (he is just more understanding of the various doctors' intentions than I am).  Mo has saved our lives.  He has literally saved my life and I will do everything in my power to make sure that I save his if necessary.  I love him madly.  


Susan Ireland said...

I am sure you are doing the right thing Abby and Ted. It is important for your peace and mind, and Mo is only 3 weeks old - so it is normal to feel anxious at this point. I think if Mo turns 1, and you still feel anxious enough to consult a series of specialists because there might be something wrong - at that point, you might say that maybe you're over-thinking... but today - no way. This is what any normal bereaved parent would do. Am glad everything sounds good so far.

Ted sounds lovely by the way - really grounded and supportive. I wish I could invite you all over for some supper :-( said...

I feel the same way. I take everything so much more personal. I want to ensure my girls and our future baby is fine. Normally when I call the doctor I start by letting him know I just want to have some peace of mind. You and Ted are doing everything right. I'm glad you wrote about the SIDS specialist, I talk to one just yesterday and she began with the sleeping back campaign with tears I explained to her that I put my baby in his back. Our babies were healthy nothing wrong and not having answers is heartbraking.

Joyce said...

Abby, I once threw a nurse against a wall, in front of the pediatrician, because she was trying to pin Noah down to the exam table and didn't bother to notice that he was choking on vomit. I grabbed my kid and found another doctor. I learned that moment that we advocate for our kids, something that you already know. Don't doubt yourself, don't apologize. Do what your heart tells you to do. Your husband and children will thank you.

Rose said...

My Dad feels very strongly that giving vaccinations one at a time spaced at least a week apart is a great idea for many reasons. He also recommends waiting on the hepatitis shots until they are a little older, since they are extremely unlikely to be exposed as babies. We did this with both of our kids and the only downside is that you have to make more trips to the doctor's office. It also makes shots much less of a big deal both during and after, and if they have any reaction, you know what caused it. Thinking of you all and sending love, as always.

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