It's reassuring to see that at least some organizations approach teen sexuality with common sense:
That's a long way to go to tell you that I finally, after more than eight months, figured out what's up with my funky milk. Get it? Foul? Bad mik? No? C'mon, cut me some slack.
We've had trouble with my milk going funky way too soon since the first week of Hannah's life. It's really annoying, and a big part of why Hannah rarely ever takes a bottle. Out of all the bottles I ever pumped and stored, fully two-thirds have been funky.
Curiously enough, it took precisely ONE Internet search to find the answer to my problems. I produce to much lipase, and enzyme that breaks down the fat in breast milk. Lipase is a good thing, aids in digestion, etc. and it's one of the big benefits of breast milk when compared to formula. But too much of a good thing is, well, a bad thing. Apparently, my milk begins to breakdown much more rapidly than most. And since it's fat that makes milk taste good, mine goes rancid and tastes precisely like ASS in as little as one day in the fridge. Even worse, the freezing process somehow exacerbates the problem, and can make my milk nearly instantly yucky.
Unfortunately, there's really nothing to be done. You can try scalding the milk before freezing it, but that won't actually help the taste of the milk - which is what Hannah finds so highly objectionable.
You may wonder what prompted my Internet search after months of finding it annoying, but not particularly pressing. Saturday night, after Hannah went to sleep, I attended a neighbor's party for they're one-year-old's first birthday. I imbibed a few margaritas. Hannah awoke shortly after my return, which is not customary for her. After a half hour of attempting to calm her, I asked Todd to thaw the only bottle we had, since the margaritas made nursing her a no-no. When the bottle was finally ready, Hannah took three big long pulls, the began to scream blood-curdling screams. Normally, I put a drop on my wrist to taste for skunky milk, but since my arm was stuck under her, I just took a pull myself straight from the bottle.
It was bad. So bad I gagged. I felt just awful for her.
Anyway, now we know. And my plan is to simply pump the day of, should we need someone else to feed her. Man, I'm lucky I work from home. I would have been so disappointed to find an entire stockpile of frozen milk useless.
Today I did a search for "Arthrogryposis" to see if my blog comes up anywhere in the first six or seven pages. It doesn't. Then I saw a suggested search for "Arthrogryposis Pictures", which I clicked because in the past, I've found it difficult to find accurate pictures. This time, it was not hard at all. Right at the top of the screen were several bone-chilling images of the ravages of the disease.
I've linked to one site (a medical site, not a personal one) that has a very comprehensive definition, as well as photos. The photos are at the very bottom of the page, and the top picture is the most representative of the degree and type of abnormality that Thomas suffered from: the bent knees, straight arms, clubbed hands and feet, distended tummy. But I will warn you, the images are NOT AT ALL FOR THE FAINT OF HEART. In fact, the only reason I mention them at all is that I want to be as fair as I can be to any mother or father who stumbles upon my site in search of some answers.
I recalled that during our desperate days of decision-making, it was this site that finally got through to Todd and me. It was this one that finally told us what Thomas was honestly going to face. And I don't mean that to imply that other sites were dishonest. Not at all. Just that the sites we had tried to cling to in those first days after diagnosis - the support groups and personal pages of parents with living children suffering from arthrogryposis - were automatically skewed by virtue of the fact that the people the dealt with survived in the first place.
I remember it like it was yesterday, sitting there in my terrycloth robe, stretched over my big belly, in front of my computer, talking to Todd at work. We were both frantically searching. The first conversation was Todd telling me that maybe things wouldn't be so bad - see, look here at this support group site! And then little bits of reality would set in. We would compare our facts to those of the people on the computer, and we kept coming up short. A while later, Todd called again. He told me to go to the site I mentioned earlier. He said to read it, but not to look at the pictures because I might not be able to take it. It was then, I believe, that we figured it out.
Those pictures, in some strange way, helped me to come to terms with seeing Thomas once he was delivered. I was scared, which is a hard thing to admit. But once he was in my arms, even though his spirit had already gone, it wasn't hard to look at him at all. He was my son - not a medical condition.
But I also added the link for another reason. Because some people have dared to say that arthrogryposis isn't very rare or devestating. They've stated that my husband and I were mislead by our doctors who were just abortion-mongers in caring-OB costumes. So I wanted to defend myself in a clinical way, and point out the things they chose not to see.
For instance, under "Frequency" the site states "about 1 in 3,000 live births". Please note the use of the word "live". This, to me, is significant because the chances of babies who are affected to the extent Thomas was making it to birth is a much lower percentage. In other words, Thomas's variant of the disease is rare, and not considered in these statistics since he and others like him often die in utero.
And as for Thomas living some sort of a normal life, well, all you have to do is read the comments under the pictures about how long they lived - if at all - to know that splints and surgeries would not have saved him. "In disorders with limb involvement and CNS dysfunction, about 50% of patients die in the first year of life."
Anyway - I wanted to talk about that while it was on my mind. Please don't feel you need to check out the link. I really just put it there for those who need it.
It seems to me that catharsis and mourning are a life-long process.
Some of you who've been around for a while may remember my friend, T. For those of you who don't have time to read up on her history, suffice it to say, she's had a tough row to hoe. I'm also going to assume that if you're hear reading my blog, you're no stranger to the concept of bad events piling up, even when you think it can't get worse.
T eventually did get pregnant after several rounds of IVF and a nice case of ovarian hyperstimulation at the beginning of the pregnancy. But other than that, the pregnancy has been relatively uneventful, and she's expecting a boy in about three weeks.
This past weekend, T's father had a stroke. He was declared brain dead, and on Monday the family removed him from life support. Her father owned a company and, unfortunately, never wrote up a will. As a result, T is now the owner of a company she knows nothing about, in a town four hours from her own, and her younger brother is mad at her because he wants it (despite being both physically and mentally unable to run it, due to a bad accident last year).
On Tuesday, T was told that her little boy is breach. Wednesday they tried unsuccessfully to turn the baby, and she was told she would have to have a c-section, assuming that he doesn't somehow spontaneously turn himself before then. Immediately following the failed version, they left for their hometown near Houston to prepare for her father's funeral - which was set for Friday.
Of course, hurricane Rita had other plans and the funeral was delayed until early next week. Meanwhile T and her husband tried and failed to get out of the area during the worst of all that traffic. They had to wait for one more day and finally made it out before the storm hit.
So now, T finds herself attempting to bury her father, reconcile his business affairs, prepare for the birth of her son via c-section, and oh yeah, mourn. I feel just horrible for her.
If you're the praying type, please ask for some calm in her life and for the strength to make it through the next months. If you're more of the good wishes type, send those, too.
I have gaudy, red and green patterned toilet paper.
Wanna know why? Because apparently, toilet paper is just what you need to weather a hurricane that may pass 200 miles away from you.
If any of you are in southern or costal Texas, and haven't already made plans to stay with friends or relatives on higher ground, we have two spare bedrooms.
I'm very serious. Contact me if you need a place to stay.
I don't think I did such a great job explaining to you how, or why, I kept going on in the face of my losses. So I wanted to try again.
The answer is really simple, when I get right down to it:
Hannah. That's why.
Not two minutes after reading your last post, I stood in front of a mirror with Hannah as she stared and chatted with herself in wonder. She kissed "the baby in the mirror" over and over and we laughed out loud, both of us, with sheer joy. Afterwards I cried, knowing that the relief I feel at finally achieving my heart's desire is something I wish I could gift to everyone.
Deep down in my heart - in my bones - I always knew that she was coming. I did not know if it would be through the gift of another woman's uterus, through adoption, or from my own body. But I knew that I would get to that joy.
And now that I have it, I can say without reservation that I would absolutely do it all over again to get to her. Every bit. Every single bitter tear. Every curse at God. Every pleading prayer. Every suffering, hellish moment I would bear all over again. I would even bear the losses again. And I dare say, it would even be made more tolerable if I had the certain knowledge that she was waiting for me at the end.
Having said that, now that she is here, I can also tell you that the desire - the drive - to get to that joy has lifted because it's been acheived. That doesn't mean I don't want more children, because I do. But I don't know that I would go through nearly so much pain to have another, because I already have Hannah. Of course, life is fluid, and my thoughts on this may change in another year or so. We'll have to see.
But I wanted you to know that that joy is out there for you, too. I think you already know that. I think that's why you've taken such great care to see that you're ready mentally and emotionally. I think that's why you've been so wise to wait and not jump back into the IVF game until you were ready. I think you know that there are a million more hurdles ahead of you, but the finish line is out there, nonetheless.
And we'll all be there in our cheerleading outfits, yelling perverse cheers for you the whole way.
Love, and Best Wishes,
Look at me go!
I actually updated my "About" page! It was so outdated, I'm sure it confused the hell out of people who were coming to my blog for the first time.
I also added a list of best posts - or at least the ones that generated the most debate or clarify some crucial part of my story.
Finally, I changed the picture. Now it has the three of us. Everyone all together now: "AWWwwwww!"
Next thing you know, I'll be springin' for the souped up version of TypePad and asking Aitch to hook me up with a design!
We resume our tale...
So after being told that Hannah was in the NICU, we sent Todd down to check on her roughly every twenty minutes. And he'd stay for what felt to me like an hour or so each time. Each visit brought the disappointment of further delay.
She may be released in a few hours.
Well, her breathing is still labored, so maybe sometime tonight.
I soon figured out I'd need to start pumping. The nurse wheeled in a giant Medela double pump, and with my best friend's help, Todd learned how to clean and assemble it. I was still hopeful that I'd be feeding Hannah that evening. But, really, I would have settled for just holding her.
Finally, at eight that evening, after hours of excrutiating waiting, I was cleared to get in a wheelchair so I could go and visit Hannah. I was so relieved, and yet so disheartened. She was so tiny and beautiful - a mere 6 lbs. 6 oz. - but not bad for three weeks early. And yet, her little chest sunk with each struggling breath and all the wires and blood stains and tubes were impossible to avoid. They were treating her with (lord help me, I can't remember what it's called) a chemical to lubricate her premature lungs, and she had a nasal canula supplying her with oxygen.I wanted so badly to pick her up and comfort her when she cried. But that would have to wait. For now, a stroke on her cheek or leg was all we could offer.
The next days were a blur for me, sprinked with moments of terror and joy. I do remember trying to be the best patient ever for my nurses (hey, I had to focus my energy on something). And I recall that even though I was horrified that Hannah was not well and with us, I still felt deep down that she was basically safe and a sense of relief came with that.
My milk came in at 42 hours after delivery. I was pumping diligently, every three hours, but Hannah was still too sick to nurse or even bottle feed. She was being given sugar via her IV. But I collected every precious drop - made even more precious by the sad fact that that monstrosity of a pump was virtually ineffective for me. What followed in short order was one of the most dramatic cases of engorgement the nurses had ever seen. I know this because every time one would come in to check on me they would say "OH MY! YOU'RE ENGORGED!" And then they would tsk and mutter, "poor thing."
As with every NICU stay, Hannah's was frought with ups and downs. She would improve, then something would go slightly wrong. More improvement, then something else. I remember the days felt interminable. But I'm sure to the outside world, things looked more normal and progressive.
The biggest upswing was getting to hold her. Once. Somwhere during the second day, I think. Todd had to wait until later.
The biggest downturn came on the third day. Todd had taken a break and gone to dinner with a good friend of mine. I was with another friend in my room when the NICU attending came to tell me that both of Hannah's lungs had collapsed sometime that morning (it must have been after 8 in the evening at this point) and that she wanted permission to drain the air surrounding her lungs with a needle (completely forgot the name for that proceedure). I consented, but was very concerned about the risk of puncturing her lung, which the doctor had put at 50/50. Then I freaked out.
When Todd walked in about 15 minutes later, I could barely figure out what to tell him. It was as if my mind had turned off. I'm normally very calm and collected in the face of medical crises. But it was as if all of my stored up anxiety picked this moment to loose itself.
I was also frustrated because our little girl didn't have one single doctor responsible for her care and I couldn't figure out who to turn to for answers on her condition. So far, three different doctors had spoken with us about her care.
By the time we got the doctor back in the room to explain the situation to Todd, she'd already performed the proceedure, which went without a hitch. Hannah was already improving.
I believe it was the next morning that I was finally able to nurse her. Thanks to a very brusque, hands-on nurse, it went very smoothly. Nursing for your first time with rock-like boobs in a NICU with your baby attached to every sort of wire and tube imaginable is somewhat less than ideal. But Hannah did well and also managed to take all of the milk I'd been collecting (which didn't really amount to much).
By day four, they decided that once dishcarged, I could "room in" with Hannah for the last night. Basically, she was still a patient, but I wasn't. They allowed me to stay in my room, but I didn't have nurses checking on me. They also allowed Hannah to sleep in our room for the first time. That afternoon they brought her in without any warning. There was a "yoo-hoo!" at the door, and the next thing I knew, there was our nurse with Hannah in her isolette!
We cried we were so excited, and my mom was the first to get to hold her.
The next day, we brought her home. Bringing my baby home with me was undoubtedly the best moment of my life, to date.
The End! Or beginning, depending on your viewpoint.