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Archive for March, 2011

Oh, the delights of good health! Ah-goo! Ah-gah! Oh-boo!

Since May’s health has returned, so have her giggles and cooing. She’s also back to bouncing, something she didn’t do for a couple of weeks.

Now that was a terrifying realization for me. No bouncing? Seriously ill. Cue conversations with my husband where I ask, “Should we take her to A&E?” (We didn’t.)

It has been a tough month. Fevers. Puking. No sleep. Screaming as the main form of communication.

No, it wasn’t fun. For the first time ever, my husband and I discussed respite care, which seems like both a godsend and a cheat. I’m a capable woman and it is not easy to admit you need help. But, lots of other parents like us receive it gladly, but it makes me feel like I’m giving up on May. Like many things related to May, it is another emotional hurdle to get through and once I’m through, I’ll feel all the better.

When I next meet with May’s key worker, I’ll ask her about respite care. We are thinking about now, but more importantly once the baby comes. Who will do May’s stretches with her? Who will take her to Small Steps School? Who will coo silly sounds back to her when she asks?

Because, in May’s own way she has been communicating more of her desires. It isn’t a sophisticated system (I want water during dinner = screaming). But, one of her new techniques, to pretend she is being tickled in order to get tickled, amuses me to no end. May squints her eyes, pulls herself toward her tummy and starts to giggle. Adorable.

Also, May enjoys hearing me repeat sounds she makes. She even recognizes that I’m doing it – which is a big step in itself.

She also responded to this hilarious video of twins imitating two old Jewish guys. “Oy, gevalt!” said May. (She’s also Jewish – though I exaggerated a bit there with her use of Yiddish.)

Actually, everything to do with her mouth she loves these days. Getting her teeth brushed. Making bubbles. Chewing on things. Oh, and grinding her teeth – an unfortunate result of her inability to lift anything to her mouth to chew on. I can’t stop her and I can’t hold a teether in her mouth 24/7.

Any dentists reading this? Or, parents with know-how? Advice on teeth grinding much appreciated.

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You can now follow Mama Lewis on BabyCenter, where I will be writing about my pregnancy, or Twitter!

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Today, my husband and I took May along to the TUC ‘March for the Alternative’ protest in London.

Our family has already been severely effected by these cuts. In an article today in The Guardian, I illustrate a couple of those ways: May’s lack of funding for one-on-one care at nursery and how her Speech and Language therapy team are being significantly reduced.

These are not small things. The first ensures May is kept safe at nursery so I can work. The second is the reason she can eat and drink.

But, don’t worry. While at the protest march, I held May back when she tried to start a riot outside Fortnum & Mason. Unfortunately, she did rile some rogue protesters up and they finished the job.

What a shame since the day was entirely peaceful as far as we saw. Here’s how our day went:

We showed up (late) at London Victoria (the wrong location). We had a lovely stroll down to Parliament Square where we joined the march directly behind a teacher’s union. There were loads of families and disabled folk. No one caused trouble and May delighted in all the drums and whistles.

After about 45 minutes of this, the protest narrowed into the approach to Trafalgar Square. This prego lady felt a bit tired and hungry, so we asked a policeman if we could leave and he pulled back the gate for us.

Then, we did what every serious protester does: we stopped for ice cream. Yum. May really enjoyed that portion of the day.

We rejoined the masses at Trafalgar Square, but only after passing a bus load of weirdos in construction helmets promoting hugs and kindness. My husband said he was ready to batter the first one who tried to hug me. That made me giggle.

Then, we walked for another hour or so, until we passed Fortnum & Masons (where May tried to start that riot).

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You can now follow Mama Lewis on BabyCenter, where I will be writing about my pregnancy, or Twitter!


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I believe you, May. You are ill.

May, I’m reaching out to you. Please forgive me. I know I called you the Great Fake when you were ill. I see now that was wrong.

I know you are angry. But, I don’t think passing on the stomach flu to both your Mama and Daddy was the right way to express that anger. Mama was sick all night and now your Daddy has reached a state where he is speaking in tongues.

As your parents, we should have been more understanding. We should have been more sympathetic. So, we aren’t surprised that every time you hear one of your parents retching, you giggle.

I hereby make you a solemn vow to never, ever doubt you again. Even if you do make crying sounds, but produce no tears. Even then.

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You’ll excuse me if the following sounds a bit clinical, but it has taken me almost two years to put May’s delivery into writing. I find it easier to deal with if I am straightforward, so I’ve left out a lot of my own personal thoughts or fears at the time.

I don’t write it for sympathy. I don’t need comforting. I write it because it has been two years and it is time to move on.

WARNING TO PREGNANT LADIES: Do you really want to read this? It doesn’t end well.

When I was pregnant with May, there was no sign that anything was amiss. Nothing. In fact, I felt exactly the same in that pregnancy as this one. That is either very worrying or reassuring, depending on how I wake up on any given day.

So, when my waters broke, no one fussed. The midwife visited me at home to test my waters for infection and told me I could labor there for up to five days if I wanted. (I didn’t. FIVE DAYS!)

The following day, I received a call from a different midwife who told me my waters had tested positive for Strep-B. This is an infection that can kill babies, so I urgently needed to come to the hospital. The process of all this happening, from waters breaking to booking in, was 36-hours.

Once there, it was another five hours before a drip with Penicillin was administered to fight the infection. Still, I had no contractions, so they decided to induce.

A drip of Pitocin was administered and I went from no contractions to full, constant torture in under ten minutes. From then on, I had an epidural.

I pushed for a long time before a doctor checked and discovered that I wasn’t fully dialated. This was the first time, since I arrived in the hospital, that I saw a doctor. By this point, we were already over 60-hours since my waters broke.

The doctor asked me to make a choice: continue to push (as the baby didn’t show signs of distress) or move to the operating room for further assistance. At this point, I hadn’t eaten or slept in days. My body shook with exhaustion, but also a reaction to the epidural. I thought I was going into shock.

Once in the operating room, May was delivered fairly swiftly. But, her arrival only came after a failed suction, and successful forceps delivery. She had a gash on her head from the failed suction for days afterwards. Really, you would have thought she’d been in a car wreck not a delivery.

May after delivery

That is the reason why I didn’t question her not wanting to feed, or shaking, or any other signs that I now know were signs of distress.

May was rushed to the Special Care Baby Unit the following morning after a midwife recognized she was seizing. She stayed there for almost six-weeks.

But, what exactly caused the brain-damage? We may never know for certain. A lot of people have theories. A midwife for my current pregnancy, told me that Strep-B needs to be treated with Penecillin within 18-hours of the waters breaking to be effective. Strep-B is known to cause brain-damage. The obstetrician assigned to my current pregnancy believes it was the combination of a protracted labor with the Strep-B. My mother thinks it was socialized medicine.

I’ve always thought it was a combination of a lot of small things that isolated would have caused no harm, but together damaged May irrevocably.

We don’t know what the future holds for May. We aren’t deluding ourselves, which I’m thankful for; she is severely brain-damaged. Our goals for her have much more to do with independence (feeding herself, using a toilet) than they do with attending a university.

We haven’t sued anyone. We looked into it, but it is a very difficult case to prove. So far, it doesn’t look like we have one. But, that might change.

Here is what we focus on: our love for May, the joy she gives us and the security we can give her.

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No, really, I'm ill.

A typical day over the past few days opens with tears. Lots of fake crocodile tears. May imitates the sound of crying, without even the slightest hint of wetness in her eyes.

May has perfected the skill of manipulation. As in: “Listen to my piercing cries! Don’t I sound like I’m in pain? Pick me up now or I will probably die.”

Then, I pick her up and it is: bounce, bounce, bounce!

A similar situation is happening at night. May didn’t enjoy almost a week of illness and increased seizures. BUT, she did develop a taste for cuddles in Mama and Daddy’s bed.

So, the good news is: she is eating again, the seizures are disappearing again and she is bouncing again. The bad news is: she doesn’t want to sleep in her bed anymore.

In some ways, this is a very good sign for May. She is learning to manipulate her environment. She is taking control of her life – even in this little way – and she is mad, burning mad, when she doesn’t get it.

Anger is a strong motivator. Desire is as well. So, May has learned to simulate the sound of crying without actually crying.

This shows she understands cause and effect in a more substantial way than she has before. If I cry like this, Mama comes running like this.

The only people not reaping the rewards of this new-found skill are her parents. Who are tired. Very very tired.

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Reader Eils wrote in after reading my post Thank you, David Cameron. She said:

Dear Stacie

please give us more pictures of delicious May rather than the government stuff – I know it’s a massive issue for you, and you have to deal with it, but May is so gorgeous that I’d rather see her, and hear about her progress.

Eils

xx

Eils, the political stuff is a massive issue. Like you, I would rather stare wistfully at May’s beaming smile all day, and I certainly don’t imagine that my writing here “does” anything significant to change things. But, if I don’t try, then I accept the future the Tories imagine, which is grim beyond belief. I can’t do that. I might as well present myself at 10 Downing Street for a slap.

After reading Eils’ comment, it occurred to me that no one ever writes in to argue with me. This was probably the closest I’ve come.

No one tells me that the title of this blog is offensive – which it is. No one tells me this photo is offensive – which it is. No one argues with me about anything.

In the real world, people argue with me all the time. Hell, I’m a teacher! I deal with teenage girls all day. Teenage girls were designed to argue.

Why is it that no one tells me what’s what? Pity? Concern? A lack of understanding about the topic?

I don’t know. You tell me.

And, in exchange, I’ll show you some adorable photos:

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This week has been a tough one for May. In some ways, it was a very normal week in terms of illness and a baby. Sleepless nights. Struggling to get food and drink down her. Lots of tears (from her, but I felt like it at times).

May received her MMR and flu vaccine last Friday. Her fevers started on Saturday. Her seizures on Tuesday. Her first full meal again on Friday.

She’s lost a lot of weight, which is worrying. More worrying, her seizures reappeared, mainly disturbing her sleep – four so far tonight. Fingers crossed, once she puts a bit of weight back on, they will go.

Illness, even one as minor as this, is always a reminder of how close we came to losing May to begin with and how tenuous our hold on her health is today.

But, one thing we do not worry about is how much it all costs. Before May’s birth, I sometimes entertained thoughts of moving back, not permanently, but for a year or two so that I could reconnect with family and show May what being American is all about.

That fantasy, like many others I had before I knew her, vanished after her birth. But, in this case, it vanished because I knew the reality of living with a severely disabled child in America would bankrupt us.

Firstly, May has a pre-existing condition. We could get insurance, but the premiums would be astronomical. If they weren’t, I imagine the deductibles would be.

Instead, I live in the UK where I pay £121/month (about $190) towards National Insurance and nothing else. When I lived and worked in America, over ten years ago, I paid over $200/month, plus, a deductible whenever I visited the doctor or had an x-ray or anything, really.

We never worried about the cost of May’s injuries. Furthermore, we were saved the additional misery of begging an insurance company to cover tests they didn’t want to.

I was reminded of this when I read the article ‘The High Cost of Healthy Babies‘on BabyCenter this week.

So, what would May’s first six-weeks of life have cost?*

($3,500 x 40 days) 24-hour Neonatal Intensive Care Ward

($2,625 x 2) Brain MRIs

($1,100 x 5) Brain CT scans

($1,100 x 2) lumbar punctures to draw up cerebral spinal fluid

$152,950 in total (about £91,770)

I assume here that cost of a 24-hour stay in the Neonatal Intensive Care Unit would include medicines, blood tests, oxygen, food, diapers, heart monitoring, neurologist’s assessment… of these and many other things, May received many times over.

I think there will be some, particularly some Americans, who may read this post and think, “Ah, yes, but if May had been born in an American hospital, she would have been born healthy and, therefore, never would have racked up such bills.”

I could point to statistics that show America’s health care system is worse than Britain’s. But, the truth is, I think if May had been born in any other hospital, or by any other team of midwives, or on any other day, she would have been fine.

I think that is a “what-if” conversation for another blog. For now, I’ll just take comfort that I live in a country where May does, at least for now, receive all the treatment and care she requires, and these treatments do not break her family financially.

*Costs taken from  www.comparemricost.com and American Medical Association.

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