Sunday, April 22, 2012

A year later...

So, the previous weekend, it has been a year. Boeboe's detethering operation. The 14th of April. When I posted my last post. I didn't forget, I chose to ignore the date. I don't know why, but somehow I din't want to celebrate something that was so traumatic to us. Yes, the outcome was good. But it was still a huge trauma. I think deep down, it's still traumatic to me. I'm not sure if you ever get over seeing your 7-year old go through a back operation, just as you don't really ever get over seeing your newborn struggle for his or her life in NICU. It's something you accept, and you go on, but you don't necessarily want to celebrate it, even if it had a good outcome. Because you'd rather they never needed to be in hospital in the first place.

But ya, so it's a year later. And even though I don't really want to remember it all, it may be good to have a record of where she stands after a year. So let's start with where she was before the operation....

A year ago, Boeboe had the following symptoms and progression:
1. Daytime urinary incontinence. It started off as a once-a-week accident at age 3, a couple of times a week accident at age 5-6, and by age 7 in the months before the operation, she had so little control that we've reverted back to wearing nappies full time.

2. Nighttime urinary incontinence. To my utter delight, Boeboe was completely dry at night by age 3. She would maybe have 2 or 3 accidents a year. This would actually turn out to be a drawback, in the end. Maybe, if she also had little control at night, the doctors (and myself!) would've realised something really could be up. But because she had nighttime control, we all thought then her daytime lack of control must be behavioural. But then suddenly, at the age of 6, she had an accident at night. The next night, the same happened. and the next, and the next. Very, very strangely, she had literally lost the control she had, overnight. She was dry one night, and wet the next, and stayed wet from there on. This really triggered me as very, very strange.

3. Feacal incontinence. When Boeboe was pottytrained, she caught on with nr 2 within one day. She had one accident, cried from the fright of it, and then never had another accident for more than a year. I was amazed, since it wasn't that easy with her older brother. I marvelled at my clever daughter. But then she had an accident at age 4.5 years old. This turned to having an accident every couple of months. Later on, every month. Around age 6, it turned to every week. And by age 7, she had almost no control left. In the 2 months before the operation, I had to help clean her up about 3-4 times a day (she wore a nappy by then). This was difficult for her to handle.

4. Constipation. When Boeboe was a tiny, tiny baby, I once took her to an all-night clinic with a distended, rockhard stomach. The dr diagnosed her with constipation, even when she was an exclusively breastfed baby. From then on, she's always struggled with constipation. Nothing we tried, made much difference. Medication would provide temporary relief. By age 6, she was diagnosed with impaction.

5. Since age 3 or 4, I got angry with Boeboe when she would walk next to me, because she would always veer off towards her left and bump into me. At age 5, her granddad noticed that maybe it is because she had a slight toe-in. Her left foot's toes would point sharply towards her right, instead of straiht to the front. We took her to the orthopeadic surgeon, who diagnosed her with 3 slight problems. Her left leg came out of her hipbone in a slightly higher angle than it should've, her left toes pointed inwards and her one leg was shorter than the other. All of it was only slight problems, and he said it shouldn't interfere or cause problems. He was more concerned with her incontinence and thus suspected Spina Bifida Occulta. This was ruled out by an x-ray. By age 6, Boeboe was having problems falling numerous times a day. Or rather, she would stumble. At last 4 times a day, she would cry because she's hurt one or both feet, fell down on her knees or scraped skin off her shins. Around age 7, she also started complaining about daily pins and needles in her legs and feet. She used to complain maybe once a month, but by this time, it was daily. She also had regular pain in her legs during the day.

So this is how things started at age 3, and progressed up until age 7. It sounds so clear-cut, seeing it all like that now. But when you live it day-to-day for 4 years, you don't notice the patterns like that. You're unable to tell the doctors, and even when you do, they see you once off, and not for 4 years. So they don't realise the decline. At age 4 and 5, they tell you it's "normal". At age 6 they tell you some children has developmental delays, or that she's on the upper borderline of "normal". So even after 3 years of struggling, you're told it's all "normal". Oh, how I've come to hate that word..."normal".

So when the operation was done at age 7 and a half last year April (2011), she was urinary and feacal incontinent day and night, and would numerous times a day stumble and hurt her feet or legs. Then, the miracle happened during the operation. Even though the filum couldn't be cut, somehow during the operation, when they cut open the dura, whatever has tethered her back, has miraculously been loosened. I still believe that this was an absolute miracle. There is just no other explanation. From day 3 after the operation, when Boeboe was able to visit the bathroom by herself in the hospital, things has started to improve immediately. From that first night, she was dry! She still had daytime accidents, but instead of daily, it was again only a few times a week. And instead of no control over the nr 2's, she again had some control. Since the moment she was able to walk around normally after the operation, she noticeable complained less about hurting her feet or stumbling so much. She also had immediate relief from the pins and needles feeling in her legs. She also complained much less about pain in her legs.

So where exactly do we stand a year later? Well, she still has urinary accidents during the day, but only about twice a month. Most of it happens when she laughs uncontrollably, run around or being tickled. There has been accidents at school, one very bad one, so I do think we'll have to at some point, do something about this. Maybe botox again. But for now, she's handling it beautifully. And I really wanted to give her time to just settle and enjoy the new lease she got on life, and to not think about hospitals and anaesthesia and doctors and tests and procedures for a year.

Constipation has not changed much at all. Feacal accidents has improved allot, but is unfortunately still a really horrible thing she has to live with. It happens about 4-5 times a week. But where she used to have no control, she now gained feeling, after which she runs to the bathroom. So definitely an improvement, but still a horrible thing we live with on a daily basis.

She still experience the odd pins and needles or pain in the legs. But instead of daily, it's now every 3 months or so. Unfortunately, she still scrapes her feet and legs regularly on a daily basis. The podiatrist believes it's due to the one leg being shorter than the other. We have a check-up with the orthopeadic surgeon this week to see what he thinks.

Nighttime continence has dissapeared completely. Since the operation, there was one at about the 3 month mark, and then one at around the 6 month mark. In the last 6 months, none. Isn't this absolutely amazing? There's just NO other symptom, that tells me just so clearly that she really indeed had a tethered cord all along. Because the decline was so sudden, and so severe at age 6 (from almost never a nighttime accident to having one every night), and then the recovery so miraculous. For this, I really can only praise the Lord. He was good to my little girl. It feels good to know with 100% certainty what was wrong with Boeboe, and that the fight I fought for those last 2 years to get her diagnosed, was worth every tear, every drop of sweat, every traumatic experience, every minute of lost sleep, every hour of research I've put into it. It makes me feel good to know that I too, did good for my little girl. After the years of blame I've put her through, for having accidents, I at long last, did good.

So all-in-all, she has gained complete nighttime control, gained about 90-95% urinary control during the day, and gained an about 30-40% control of the feacal incontinence (rough guesstimates). I don't even want to think what our lives the past year would've been without the operation. It was a turning point in my daughter's life. It made all the difference. After continueing the phsycological therapy for a while, she has gained confidence, security and happiness. Something that she would not have had without the operation. Life has changed for the better for her. And I'd forever be grateful towards the dr that was prepared to take a chance and go in blindly. With no MRI evidence. With nothing other to go on than the word of a scared mother and father. And against the wishes of his esteemed collegue. And I'd forever praise the Lord that was with him that day, to guide his hands to cut at precisely the right place without even realising it. There is just no other explanation for the miracle that happened that day in theatre.

So yes, that's where we stand a year later. It's been a good year. A wonderful year. A healing year. And I am grateful.

Saturday, April 14, 2012

Having compassion...

Before I delve into what's on my mind, just a quick update. It's going well with my little family. I've been scarce, still, because yes, can you believe it, I'm STILL nauseous!! Gosh, 23 weeks pregnant and still having morning sickness (which of course isn't contained to mornings only). Just my luck. Apart from that and normal pregnancy complaints, and the horribly low bloodpressure, me and baby are doing absolutely fine. (S)he is a busy body! Kicking allot, and even having hickups at least once a day. Sometimes quite a bit irritating, LOL. Something bouncing up and down in rythme in your tummy. Funny feeling, that.

It's going well with the other 3 children as well. We had a quick holiday, much too short, where we rested quite a bit. The children played all day long, entertaining each other. And they read allot, which made mommy very happy of course. Boeboe is doing okay, not experiencing too many symptoms, just the normal everyday struggle with the tummy, and the rare bladder accident every second week or so. And of course, the regular falls, but now that it's winter, she's in shoes so it hurts less. We've made an appointment with her previous orthopeadic surgeon to first see what he thinks before we go ahead and build her shoe up. So at the moment, life is good all around for all of us. Monkeyman had his teeth fixed, and again, it looks absolutely beautiful. Thank goodness that's over and done with. He handled the anaesthesia like last time...not too well. :-( The dr was very kind, I held Monkeyman on my lap while the dr chatted to me, unobtrusively holding the little "pipe" under Monkeyman's chin. He just fell asleep! Amazingly easy. Unfortunately, afterwards he cried and fought bitterly, and was nauseous and tired the rest of the day. And again he got a sinus infection from the pipe down the throat, or the anaesthesia, or maybe it was a cold. In any case, after about 5 days he was back to himself, with 2 gorgeous new teeth and a wonderfully bright smile. :-)

So what has been on my mind...compassion. People that have it, or don't. Sometimes, I'm a hardheaded woman and stubborn about something. Like my passion about small children and creches. I'm pretty sure my compassion could be more in that regard. It's geared towards my point of view, as a SAHM. So my compassion may seem limitted to working mommies. But then, in other areas, I get astounded when I talk to people and see how little compassion they have towards other parents.

Like the newest "buzz-word". Gender Dissapointment, or for short, GD. So many, many women have this. When they wanted one specific gender and find out their unborn baby (or newborn) is the opposite gender. Some mommies cannot find it in their hearts to understand this absolute dissapointment, sadness and even a sense of failure. They feel that when you are able to HAVE a baby, and you have a HEALTHY baby, you should be grateful, over the moon and the happiest person alive. I can understand this lack of compassion, in some ways. Especially when it comes from a childless couple, who would give anything for a baby. Or when someone went through the terrible heartache of loosing a pregnancy, baby or child. Or when they personally know the intense struggle a parent goes through with a special needs baby. How could you blame them for showing no compassion toward those that's lucky enough to have a healthy, gorgeous baby. What should it matter what gender it is?

But it does. I personally know this. I've been through a miscarriage. I have a special needs child. I know the heartache both of those can cause. I have never lost a baby after birth, so I would never assume I know how those parents feel. But even throughout all my experiences, I STILL get it. I get the heartache, the longing, the anger, the dispair a mommy feels who wanted a little girl. I understand. And I show compassion. Because I too, could've been one of them. So easily, God could've given me 4 sons. As it is, I think He may have given me 3 sons. And I can't help but be sad and dissapointed. I love my boys. God knows, I love them with all my heart and soul and I would never, ever trade them for any other baby. They're mine.

But.

I want(ed) another little girl. I wanted the bows and butterflies and pink polka dots again. I wanted the little dresses, the dolls for Christmas, the softness that comes with only a little girl. I had the bugs, the dirty fingernails, the little cars and action figures twice now. I would've loved to have another go at the frilly again. But alas, something tells me that my feeling that this could be a little girl, is just wishful thinking. I can't be for sure. One night, I'll dream about a baby wrapped in a pink little blanket. And the next evening, I'll have the most gorgeous little boy that pops out without pain, LOL. So I have no idea what I'm having. The past few weeks, I'm having a strong suspicion that it's a boy. But I'm coming to terms that I'll be fine, either way. This is my last baby, and I would've loved to have 2 pigeon pairs. But, I will also be okay with 3 boys, because I already have my beautiful daughter who I prayed for so very very hard.

This gives me a little bit of a look inside the heartache of a mommy who have 2 or 3 boys and desperately wanted a little girl. It's not the baby boy who's the focus of the anger and sadness. It's the loss of the gender you wanted. The loss of a dream that now will never happen. The loss of a whole different life. The loss of so many possible futures. No wedding dress drama, no late-night girly talks, no cutex-evenings, no bows and dresses, no pink and purple frills, no playing Barbie dolls together or making tiny baby dresses for her dolls. So many losses. Big and small. Things that you'll never, ever have. Because you don't have that daughter you wanted so desperately.

This doesn't mean you don't love the 2nd (or 3rd or 4th) little boy you're carrying any less. It doesn't mean you wish him away or doesn't want to be pregnant anymore. It doesn't mean that you'll want to swop him after birth for a little girl! It just means that you have to come to terms with the loss of a dream you may have carried with you for 30 or even 40 years. To have a little girl of your own. To have the bond with that little girl, that you shared with your mother. Or like in my case, the loss of giving my daughter the sister she so desperately craves. The loss of giving her the love and support from a sister like I have.

Someone said that why is it that PND (post natal depression) gets recognised by almost everyone now as not the mommy's fault, and not in her control, but something like Gender Dissapointment gets frowned upon? How is it that one woman's depression about something, gets recognised and treated, while another has to hear it's "all in her head" and she has to "fix herself". How would we know how deep her dissapointment goes? How deep her sadness and depression goes? And what triggered it? I agree with that person. Just as PND is real, and not the mommy's fault or in her control to "just fix it", people should understand that gender dissapointment may also not be in that person's control or ability to "just fix herself". She too may need time and support.

How can people not be compassionate about this? How could they be so harsh, to judge these feelings, these mommies, for feeling that way?

Same goes for other parenting issues and choices. Like formula vs breastfeeding, natural vs Csection, SAHM vs working mommy, private school vs public school, junk food vs all-healthy diets, etc.

From as long as I can remember, I wanted children. Especially a little girl, but any baby would do. I played dolls until after the age where my peers were already dating boys and worry about make-up and periods. It's all I ever wanted out of life. A baby. So from the start, my mom would tell (or rather warn) me that I must not be fixated on a natural/vaginal birth. Because I'm a tiny, thin, frail little thing. Severely underweight, short and the thinnest bone structure you can imagine. She told me about c-section and that I must be prepared about it.

I would always be grateful to her for this preparation. I went into my first labour with huge, open eyes. I knew it was a chance only. I knew it's something I want, and something I wanted to try for. Natural birth. But I also knew that once I tried, I would be satisfied with any outcome, as long as baby is fine. So when, after 10 hours of active labour, my baby got stuck, I happily agreed to a c-section. The one nurse came to me, put her hand on my arm and told me that I must not feel like a failure. That I must not be sad about it. I looked at her all bewildered and then at my husband, silently mouthing "what's this woman going on about??". Because to me, it really was fine. A few hours later my baby was born via c-sect and I didn't mind one bit. I had my contractions and labour. I had my wish. I now know how contractions feel like. I know what is labour. I know the pain and the fear and the excitement and the buzz. I may not know what the last pushing stage feel like, but I'm okay with that. I had the experience I wanted. And my baby turned out just fine. Healthy, strong and the best sleeper ever!

But having wanted a natural birth, and getting a c-section in return, I can understand other women's dissapointment. It's a process. Sometimes a long and hard process that can even take years, or until you have a 2nd baby. Or maybe never. Who are we, to judge those women who cry about it? They can't just shut their feelings, turn the tap off and ignore it all? So how can we judge them because they have that feelings? Let them process it. Support them. Try to understand that they didn't ask to feel that way. It is what it is. Let them be sad. Let them be angry. Let them be dissapointed. Don't deny them their feelings, by telling them their baby's health is more important. They know that. They're not stupid.

Same with breastfeeding. I was one of the very very lucky ones. I breastfed like it was something I did all my life. With my small frame and lack of any fat on any part of my body, I don't have the cupsize one would think is necessary for breastfeeding. So growing up, I would say "eeuuwww", I'm never going to do that. Part of it was fear of what breastfeeding would do to my already non-existing womanly look, and part of it was revulsion for something so animalistic!! How silly I've been!! So, once pregnant and reading all the books, I realised that I wanted to do this for my baby. Because it would keep him healthy. So I tried. Again with a very open mind. I bought all the bottles and tools necessary to formula feed for just in case. I would see how it goes. So even when they gave my baby formula (long story) once after birth, I wasn't too upset because this was all a trial-run for me in any case! Then, within a week, I had so much milk I almost (ya, okay, really just almost!) looked like Dolly Parton. And suddenly, I felt sooooo proud and happy and like I was the only woman ever to achieve something so amazing as making her baby's own milk. Feeding him exactly what and how much he needs. And seeing him shot out from the 75th percentile to the 97th on what my body did! I felt ontop of the world! I felt invincible. I felt like if I could do this for my baby, I could do anything. I felt like the best mommy to this baby. And it made me so happy. It came so naturally, so easy. I totally forgot about c-sections vs vaginal birth. Because what did that matter, when here I was feeding my own child, out of my own body, with so much success and ease. And watching him turn into the most friendly, fat, squealing little baby who slept through from age 5 weeks, just cemented this feeling that I did my child good. I did him good. Wow.

And I became a breastfeeding expert and tried to convince everyone in my path about how wonderful this is, and how wonderful it could be. But then, I read about other people's heartache. Those who tried, and couldn't breastfeed. Or those that chose to formula feed for whatever personal reason, and now get bashed and made to feel guilty about choosing something "less good" for their babies. And I realised that I didn't want to be made out as less of a mother because I couldn't have my baby naturally. Why should someone that formula feeds, be made out less of a mother? It doesn't diminish my fervent believe in the good of breastmilk. But I can still have compassion for the mommy that chose formula, for whatever reason. I can still try to understand why she wanted or needed to do it. And I can still support her that formula can be good for a baby too. That her baby can also thrive and be contend and happy. That she too, may have done good for her baby, even if he was born via a c-section, got formula from the start and never co-slept or whatever other decision his parents made.

We mommies, we should be more compassionate. We should understand that each of us have unique circumstances. We have unique wishes and experiences that moulded us in our lives. That we cannot live each other's lives. We cannot be in one another's shoes. We have to create our own happiness, and should stop living through others. Of course we can be pro towards some choices, like natural birth, or co-sleeping. But we should stop judging those that believe it's not essential for a happy, thriving baby. We should stop making that mommy feel guilty about her choice, by being too vocal about what we believe is right or wrong. And we should stop feeling guilty for our own choices, when we read about someone else's choices. She has the right to feel ontop of the world, because she was able to deliver vaginally. Let her be happy about it! Rejoice with her! Don't deny her feeling proud for what her body achieved. And don't feel guilty, because you think she thinks less of you for not being able to do it. Be proud of what you have achieved. A healthy, gorgeous baby who loves you and his daddy more than any other person in this world.

As a passionate, argumentative person myself, I so easily fall into the trap of trying to convince people of how right I am. That what I do, or did, must be the best choice because look at how well it turned out for me. But who am I to say what is best for another mommy, or another baby? How can I be so presumptious to know what another baby needs? I totally believe in the saying "Mommy knows best". Each mother knows their child intimately. They know what they need, and what is best for them.

Today, my 4-year old came to sit close to me, laying his head on my shoulder and looking adoringly up into my eyes...and he said "Mommy, you're my very best mommy". Aawww. So sweet. Not that he has any choice of any other mommy, but that's fine. All that matters, is that I'm his very best mommy. :)