18 Month Well Baby Appointment

Today was supposed to be the twins 18 month well baby appointment.

But, instead of taking two happy, healthy, curious little guys in for their regular checkup. Together, Dan and I brought one. Just one. Never again will we experience the chaos that was involved with bringing two busy little boys… twins… to the doctor. That thought alone makes me want to vomit.

Just before leaving... Dan tells me the story of the friend of a friend who called him today to tell him yet another story of Matteo’s life/death making an impact. Apparently, parent of twins… one twin had a high fever. Parents brought child in to the ER, and the child has been there for several days, and they still don’t know what’s wrong. Of course, I don’t know the additional details/symptoms that they shared with the MD’s. It makes me happy to hear this story, of course. That they weren’t just turned away and told to bring the baby home. It makes me happy to know that because of Matteo, maybe another little life is being saved. But… shortly thereafter, I start processing this a little more in my head. “Dear God… what if I would have brought Matteo in to the ER that night? Would things be different? Would he be ok? Would he be here right now? With us?” I cry. I can’t breathe. I sob. I am physically sick.

We get to the doctor. I’m focused on Matteo and why he died. I asked if a child can die from a fever. No. It would be highly unlikely, he said. Fevers tend to top off… never really getting above 106 or 107. The last fever reading I have on Matteo from July 4th was 104.3 at 8pm. I have the entire day documented with fever readings, what he ate, when we gave him Tylenol, etc. I’m a freak like that. The detectives took photo copies of that paper. I still have it. I have referenced it daily looking for some sort of clues.

The doctor continues to tell me again that one of his thoughts is that Matteo had a very rare side effect from the Hand, Foot & Mouth Disease that the kids all picked up at the San Francisco Zoo over the last weekend in May. He said they were the worst cases he’s seen (and our MD has been practicing for quite a while). Matteo’s was by far the worst. He got hit with it first. And the blisters on his feet were horrible... and you could still see visible signs of the blisters two weeks ago. I even blogged about it. It started with a fever that wiped him out. Matter-of-fact, he was more lethargic and sick for the two days after the trip to the zoo than he was the weekend he died. WAY more sick. He took a 5 hour nap on the second day of his fever and then first started feeling better. We thought that fever/sickness was WAY worse than what hit him two weeks ago. Yes... we thought. Anyway… I was told by both the coroner and our pediatrician that in very rare cases the Coxsackie virus can impact the condition of the heart… causing cardiomyopathy. Or, it can cause changes to the size of veins, etc. Please note - I’m no MD… so don’t quote me on this.

Anyway, Dr. O did Rocco’s checkup. Rocco is in good health. However, I did ask to have a referral to a cardiac specialist to have Rocco’s heart looked at via ultrasound. If it turns out that Matteo’s death was the result of a congenital defect… then I worry about Rocco as well. After all, they were both sick constantly throughout the winter. Every other week we were battling bronchitis, an ear infection, and Rocco ended up also battling RSV and had constant issues with bronchiolitis. Dr. O agreed with me on getting Rocco’s heart checked out in more detail… saying it was a very reasonable request. Ok… good. I’m not going crazy. I’m not yet a total psycho mommy. But, I’m sure that’s just around the corner.

How ironic is it that I mentioned to a handful of people that I felt like there was more behind the boys always being sick? Even crazier is that I worried more about Rocco’s health. Matteo always seemed like the healthier of the two to me...maybe just because he didn’t get RSV and battle bronchiolitis as often as Rocco did. I don’t know.

I wish with every ounce of my heart that I would have followed through on my gut. Ugh. But, would I have had Matteo checked out too? Or just Rocco? Through work, I’m connected to some of the world’s greatest physicians and surgeons. All right there… within arm’s reach. UGH, ugh, ugh. If only I could turn back the clock.

Why didn’t I follow my gut then?

Was it because I felt I might be dreaming up some of this stuff in my head? Because when you work at a children’s hospital… you hear the worst of the worst stories. You become somewhat paranoid, for all the obvious reasons... constantly looking more into odd behaviors, bruises, tummy aches, etc. You also hear about absolute miracles. But, you never think… or actually... you HOPE with all your heart and soul, that you will never experience what those parents are going through. Not to mention, what their precious, precious babies are experiencing and battling. Oh, those children. Those dear children. You hear their stories and your heart breaks, you hurt for them. You cry for them. You honestly wonder if you could ever be as strong as them, or if you could ever handle your child being sick with as much courage, strength and fight as those parents do. You admire them for their strength, courage and faith... because it's so strong you can almost feel it in the air.

And, here I am. My child is gone. Gone. Forever. And, I will never, ever know if there is a fight we could have fought.

I would have fought. Dan would have fought. We would have fought HARD. Dan and I would have put on the biggest boxing gloves and fought until we couldn’t fight anymore. We would have done anything… we would have gone into extreme debt, we would have traveled a million miles, we would have done ANYTHING to still have Matt here with us. Right here. Right now. Oh, how we would have fought…

Maybe we will someday know why he died. I really hope, with my whole heart and soul that we will. I NEED to know. We are still waiting to hear back from the coroner. Still. Waiting. And, hating every day that passes with no word.

Rocco’s 18 month growth stats:
Head: 50.4 cm (off the charts)
Height: 33 inches (75th %ile)
Weight: 27lbs 10 oz (70th %ile)

Matteo’s final stats… from the coroner:
Height: 32 inches
Weight: 27lbs

When we got home from the doctor’s office today, I again looked in my Toddler 411 book. You see, I referenced this book after I put Matteo down to sleep, the night he died. I was so worried about the little guy. I was pondering in my head if I should page the doctor for the second night in a row… or if I should take him to the ER. Dan seemed to think he’d sleep it off that night and would be better in the morning. After all, we had lived this fever song/dance throughout the winter months with both boys. A million fevers. A million sick and sleepless nights. How could either of us have ever known that this fever was OH SO DIFFERENT than anything we battled before.

The physician who wrote the book clearly states… a doctor will be more concerned with a child who has a 102 fever and is acting lethargic and nonresponsive, than a child who has a 104 fever and is playing or walking around. Ok. I did read that right. I wasn’t just dreaming.

But now… I’m bruised. I'm hurt. Forever. My child had a fever. A FEVER. And, he died. He should have been there today for his 18 month well baby appointment. But, he wasn’t.

A fever will never be the same. The next fever will probably have me close to cardiac arrest.

And, I will never again have another growth statistic for Matteo Tate. He's forever frozen in time at 17 months and 25 days.

And, that hurts. A LOT.