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Showing posts with label spina bifida. Show all posts
Showing posts with label spina bifida. Show all posts

Monday, May 24, 2010

Losing It

Evan's summer break started officially on noon this past Friday. I had all of these grandiose plans of how we were going to spend the summer, since I am still on maternity leave for another month: outings to the park with my boys, lazy afternoons in the sun, picnics. Ha!

Evan has ADHD. I know, I know. I believe it is completely overused as an excuse too. But my son truly needed medication to focus in school once we found an academic program that offered up an adequate challenge for him. In other words, we tried everything else first. So here lately, we notice he is getting more aggressive. I figure it is the changes that have taken place in his little world, from having a mom on bed rest to getting a new baby brother after almost 9 years as an only child. So I make an appointment with our doctor--incidentally on the same day Zachary was to be checked for the sacral dimple. Of course, this required some tag-teaming on mine and John's part, as both boys were scheduled at the same time, in the same office, with different doctors. Zachary's appointment resulted in a referral for an ultrasound of his spine. Evan's appointment resulted in the discontinuation of his meds due to side effects and ineffectiveness, and a referral to a child psychologist.

So today was step one: Zach's ultrasound. I was a nervous wreck, since our doc pretty much already told me it looks like some form of spina bifida. We just needed to know how severe it was. I told Evan how important the day was, and that I needed him to behave. He understood. So we all load into the car and head to the hospital for the test. Evan even brought a book along to read in the waiting area. It all started out fine. Then it hit.

"I'm bored."

"I'm starving. You never feed me."

"I'm going to dehydrate over here!"

"I want to sit next to Zach!"

"Why isn't there a kids' show on the tv?"

Constant. Complaints. But that is nothing compared to him running up and down the hallway of the pediatric wing of the hospital, jumping up and down to slap the decals of kites and clouds and suns that adorn the walls. Or him arguing with his father in front of a waiting area of tssking grandmothers. I thought for sure that John was going to kill him. Or that I would lose my cool and do something that would result in my Mommy license being revoked.

We manage to hold it together long enough for the ultrasound, where Zach got a clean bill of health, and meandered to the Lactation Services office to get Zach weighed. But Evan's behavior just got worse. And worse. And worse. By the time the lactation consultant was ready for us, I was in tears. I'm not sure why--hormones, spina bifida threat, Evan's behavior, the stress causing a decreased milk supply that is requiring supplementing Zach's breast milk. Or a combination of any of these factors.

It's only been 11 days since Zach's birth. I think I forgot the demands of new mommyhood. He hit a growth spurt a couple of days ago, and our routine goes something like this: Nurse him anywhere from 15 to 35 minutes, followed by pumping whatever he left behind. Every 2 hours. The nursing-burping-pumping routine takes almost a full hour. So basically, I have one hour to wash pump parts, change diapers, hurry and take a shower, use the bathroom, get dressed, eat something, or any other task that needs to be completed to meet mine (or his) basic needs. And of course this goes on around the clock. Don't get me wrong--I love this baby. He is still the easiest baby I have ever met. I already cannot imagine life without him. I think I am just feeling a little overwhelmed with everything.

In the meantime, I picked up the new schedule at work. How beautiful was it to see my name scheduled for shifts starting on June 28th? Especially when, by the time my postpartum recovery is over, I will have been off of work for 20 weeks! Almost 5 months!

As for other news in my world? Zach's newborn pics came in the mail today, which got me all giddy. And I also took my first walk around the neighborhood since being put on bed rest in January. And unless you want to talk of the color/ consistency of newborn poop, that's all I have to report.

Friday, May 21, 2010

Worry and Fear

I haven't told anyone this because I don't want to induce panic. But since I know for a fact that no family members read my blog, or even know it exists, I can say what I want here.

2 Day ago, Baby Zach had a messy BM that required really thorough cleaning. His little stump from his umbilical cord has not come off yet, so he has yet to get the full wash job that comes with our ability to full submerge him in water. So aside from the quick once-over with a soapy washcloth, nobody has done a very thorough investigation. Well, I had to finally. And that is when I saw it.

Just posterior to his little anus, there is a dimple--a very, very deep dimple. It also has some blue-black coloring to it, and looks like a second opening. Knowing what I know, I immediately thought of neural tube defects and called our doctor. Upon further probing, I saw that it is not an opening. But it can still represent mild spina bifida. It can also mean nothing. Or it could mean that at that location, there is a defect in the formation of his spine. So in other words, we don't know.

Zach has an appointment with our doctor today. I am so worried that I cannot stand it. I am expecting her to order more testing just to be sure--usually an ultrasound or MRI. All I can think about is what I did in the first trimester. I caught H1N1 from a patient at work--was it the Tamiflu? Was all of the orange juice I gulped down, the multi-vitamins, the green leafy veggies not enough? What about all of the preterm labor drugs?

Of course it is most likely that this is all completely harmless, that it is just how Zach is made, and doesn't represent anything at all. I am clinging to that. After all, in the multitude of ultrasounds I received during my pregnancy, nobody ever suspected a neural tube defect. As far as the other testing, well, I turned it down. The odds are that if you get a positive result, it could be a false positive and incite panic for no reason. Plus there was no way we would make a decision to terminate a pregnancy based on disability, so why even know?

I am having a hard time. I look at my baby boy's sweet face and want to cry. Please, Dear God, let my baby be okay!