Wednesday, April 13, 2011

Micah's Neurologist Appointment

So way back when Micah was in the NICU they scheduled him an appointment with a neurologist for April---back then it seemed like forever away. Well forever is here so today was his appointment. I was kind of dreading it--nobody wants to go to a neurologist for their own kid. I was afraid of what they might say, especially since Micah seems so normal, I just didn't want to be hit with a surprise bomb if you know what I mean.

As always, I will back track a little.  You might be wondering why he even has an appointment. When they are in NICU they do head ultrasounds on the babies frequently to check for brain bleeds, which is generally pretty common among early preemies because their brains are still immature. Micah had a Grade 1 brain bleed on the right side, which was basically the most minimal version of brain bleed you can have and I was told by the doctors that for his gestational age at birth it was basically like never even having a brain bleed. That was a relief. He had another ultrasound about 3-4 weeks later to see how the brain bleed was doing, and it had gone away. Another relief. What was very unsettling was the new news: he had cystic "PVL" and if I quote the NICU doctor "not what you want to see." I was sick to my stomach. They told me it could mean anything from Micah having no issues, minor learning disabilities to cerebral palsy and total mental retardation. One of the worst things about it was there was no way to know then, only time would tell. We were told things like the brain is "plastic" meaning it can rewire itself. I saw the scans and to me, a very much non-expert, it seemed like his cysts were pretty tiny so I hoped it was just a mild case giving him a better prognosis.

I educated myself and did the google-until-you-have-a-nervous-breakdown thing. It was horrible. I was always worried. I hyper analyzed anything about him. Some things happened to ease my fears, a) Developmental Eval came to see him around his due date and said he was advanced in many things b) he smiled around 7 weeks old (adjusted) and has been super smiley ever since c) he has reached nearly all of his developmental milestone nearly on time or fact he is advanced in many areas. Not to mention he has ALWAYS been described as "alert", even when he was so very tiny in the NICU. Those things have reassured me so much. I was just afraid that maybe I was missing something major by being so optimistic.

Back to today's appointment. We showed up to a nice little waiting room, all decked out for kids and pretty cool actually. The nurse brought us in, weighed him, measured his head etc and got a few details from us about him. I knew I was in the right place because when she saw his purple Gentian Violet tongue she said "He's got a Chow tongue." Ah, a fellow dog person. ;) The doc came in and she was happy and friendly and totally fell in love with how adorable Micah is (how could you not).

She checked him out played with him a little and did all the little testy things evaluaters do to babies. Checked his reflexes, watch his eyes track, pulled him up by his hands, checked his grip, got him to smile, bear weight on his legs...stuff like that. She was very happy with him. He did not have high reflexes which is good since high reflexes can be a sign of high tone (if you are a preemie parent you know all this kind of stuff).  The only issue we talked about, and we already knew, was that his left thumb tends to want to tuck in to his hand.  The physical therapist saw that and told us to just massage his thumb. I had been doing that and he has been opening it easily, grabbing stuff, keeping his thumb out and holding his thumb outside of his fist like he does with his other hand. She said it's great that he is doing that. She called it a "soft sign" meaning it's nothing major, and that it is mild, as opposed to never wanting to open his hand and only going back to the same fisted position once you let go. Overall she was very pleased and said that she believes that he will be completely normal.

We also discussed his actual brain. We talked about the brain bleed and such and how she wasn't sure why he would have bilateral PVL (meaning he had small cysts on each side) if he had the brain bleed on just the one side. I brought up that he had an APGAR of 1/7 (Isaac was a 9/9) and that probably had to do with it. PVL is caused by a lack of oxyen to the brain...and since he was not born screaming and breathing, and had to be intubated I'm pretty sure that is when he would have had any damage done. I don't think the NICU doctors wanted to bring that up because it might make it look like it was their fault (I don't think it is). She agreed that the APGAR was probably why he had Bilateral PVL. Regardless, she says that it's apparent that he is very intelligent and doing well and normal which is the best you can hope for. He even has a higher head to body ratio, meaning he has a big noggin for his little body. She said that neurologists tend to make a big deal out of head to body ratio and head circumference because it usually predicts intellegence. She said it's not necessarily that a huge kid with a huge head, just the head size compared to body size. That was also reassuring.

She was so comforting, personable, and knowledgable. I wish she could be my pediatrician. Not only that but she spent over an hour with us, which was nice to not be rushed in and out of there. Oh, and she showed me a picture of her dog! Man I REALLY wish she could be our pedi.

Praise God for answering my many heartfelt prayers---and those from all of you around the world who were praying for Micah. He really is doing amazing and every day is such a blessing.

Thursday, April 7, 2011

H1N1 Vaccine To Blame?

Could it be a twin killer?

Shocking title I know, but I feel like this is very important. I don't really know what to do with this new bit of information. I can't say for sure if it was due to the shot, or if we had lost him before I even got it. I don't know. Not knowing is a killer. In more ways than one.

Ok. So to explain further, last night I was parousing on Facebook and one of my friends posted a link about the mercury in vaccines and how they could trigger autism. I had heard this a long time ago and then I had heard it was disproved. Now it seems like newer evidence is out there to re-prove it. Regardless, I never got far enough in the article to even read the research...because my eyes stopped dead in their tracks and my soull buckled to it's knees when I read this:

"Swine flu vaccines contain Polysorbate 80, an agent linked with infertility in mice, which may extend to infertility in humans. There are 3,587 reports from women who lost their babies very shortly after getting the H1N1 swine flu vaccine, causing many to question the safety of this vaccine."

I followed the link to the article and read it. I felt like my blood suddenly turned to concrete. I was petrified with shock, what if, confusion, revelation.  A horrible, horrible revelation.

One of the doctors had thought Jeremiah had passed due to Twin to Twin Transfusion (TTTS), the doctor, who was a specialist, had never seen them in ultrasound before (those of you may know my Tricare Insurance/Referral Process story of woe, those that don't will have to wait for another blog on another day).  I was pretty convinced that despite his medical opinion, it was not TTTS. At 22 weeks gestation we had the perfect ultrasound. Micah was perfect. Jeremiah was perfect. Fluid levels, blood flow. Heck they were both measuring almost exact... the doctor there noted how "rare" that is to be so similar. I asked her about TTTS, having read up on identicals sharing a placenta, and she said that if it was bad we would have seen it well before now. So having the new doctor who had only seen Jeremiah already long gone in ultrasound, isn't the best source of truth in my opinion. Jeremiah was just .5 inches shorter than Micah and weighed 2lbs, once Micah had lost all his fluid from birth he weighed 2lbs 6oz at the smallest. So it hadn't been that long. I don't believe that TTTS was the reason at all.

Anyways, after 22wks I moved to the states, dicked around with referrals and FINALLY (after battling, tooth, nail, and tears with Tricare) went to my first OB appt in the states. October 18th, 2010. I was 28 weeks pregnant with identical twin boys. I fought for more ultrasounds. I cried for more. But they were all booked. I should have gone to the doctors directly and pleaded...but I didn't.  Anyways, back to my appt. I was getting pretty uncomfortable by now and that was normal. Everything at my appt was good, they both had strong heart beats in the 140s. Or so we think. The doctor highly recommended I go get the flu shot, which is paired with the H1N1 vaccine. I had never had or wanted the vaccine before. I refused to get it when I was pregnant with Isaac in Okinawa. They told me that I could die or lose my babies if I were to get Swine Flu, and being in the States I felt like it was more likely to get sick. So I went ahead and got the shot. I was ensured that it was safe for pregnant women. Heck, pregnant women are considered priority. I felt like I was making the best decision for the well being of my babies.

Or so I thought. 10 days later, to the day of my shot, I would be giving birth to my stillborn son. He could have been gone for approximately 1-2weeks. 10 days falls right in that mix. Yes we had two heartbeats on doppler on the 18th. But it could of been just one. After all, I spent 4 hours in L&D two days after the shot because of contractions (that were just braxton hicks) without them knowing there was only one heart beat. At 28 weeks it's hard to track one kid let alone two with monitors. Then I spent an entire night on the 27th, with MULTIPLE doctors, techs, and nurses trying to get both boys on the monitors at once. While using ultrasound to do so. They still had no Idea Jeremiah was gone. The only person to find that was a specialist with his big ole machine. The only way I knew, without ever knowing, was the pain in my right side ribs from Jeremiah's body pushed up, with little to no fluid left around him. All along I thought that was just him kicking the crap out of my ribs. So was he alive on the 18th, when I got the shot? It's hard to say. I can't remember when my ribs started hurting. I know we had lost him around then, because shortly after that appt, after my husband had came back from Okinawa to meet up with us, is when it all started to change. I got more miserable, more in pain and my stomach seemed to grow twice as big overnight. Everything went to hell. My skin was so taught is shone like a mirror. My stomach looked a little lopsided (from Micah's growing amniotic fluid levels-again-I didn't know this). I could not sleep laying down, and hardly sitting up. In a few days time I went from uncomfortably pregnant with twins to down right suffering in perpetual misery.

I have come to accept that things happen out of my control. But to feel like maybe it was a decision that I made to get the shot, even if my intentions were to protect them, that could of led to his death. Ugh. The thought sits in my stomach like rotten milk. I should have went with my gut instinct. I should have refused the shot like I had done time and time before.

Even still, I cannot change the past. I will not let this bring me down again. There are a lot of things I would change about how and what happened if I had the chance. Getting the shot would be one of them.  I will not let this grab hold of me.  I will not let the Enemy bring me down. I will however let myself deal with this new bit of information. I can't just ignore it. It hurts. Bad. But the one thing I can do is refuse to ever get a stupid shot like the flu shot again, especially while pregnant. One time is all it takes to change the world as I know it.

And the biggest issue for me now is...why do they not warn you about the fact that there are 3,600 reported cases of miscarriage and pregnancy loss associated with this vaccine? Isn't that something they should HAVE to warn you about?  Be wise. If you are pregnant, I HIGHLY recommend you refuse to get the H1N1. It's not worth the risk.