Tuesday, February 28, 2006

Welcome to Holland: Part Two

The good news was that there didn't appear to be anything wrong with the baby's heart or spine, which meant that it was likely that she didn't have spina bifida or some of the other conditions often associated with hydrocephalus. It also didn't appear to be genetic, which meant that any other children we have will have as good a chance as anyone to be born perfectly normal. None of this good news seemed to soothe our pain though. At one point I remember we were talking about how our little girl's life might be like, and the possibilities that she might be noticably handicapped in one way or the other, and we were worrying about the cruelty of children when it comes to that sort of thing, and Gabe said "You know, I hope no one ever picks on her, because I'd hate to get sent to jail for beating up a twelve year old." That made me laugh. But I knew what he meant. The crazy thing was that hearing the terrible news had somehow made us realise how in love with this baby we were before she'd even been born! It took us about a year and a half and one miscarriage to finally get pregnant with her, so we'd been looking forward to having her for a long time, and we all of a sudden began to understand the unconditional love a parent has for their child, even before they are born.

On February 6th, 2006, when we were at the prenatal diagnostics office, they did an amniocentesis to check for lung maturity, because they wanted to deliver the baby as soon as possible so that they could get her the help she needed. This is where in hindsight I get a little angry and wonder whether things weren't done as well as they could have been. I don't of course remember all the exact numbers and figures, but I think the number they were looking for to indicate likely lung maturity was something between 52 - 59, and the number they got from the amnio was 49, so they said that there was a chance that her lungs weren't quite mature yet, so they sent me home. An ob-gyn friend of ours had an office in the same building so before we left we stopped by his office on the off-chance that he was there to tell him what was going on and get some sort of comfort. His first reaction was basically "Why aren't you in the delivery room?", and he went off to speak to the other doctor to see what was going on. Apparently the neurosurgeon thought it best to delay the birth because he said it would be better not to run the added risk of lung complications. Now, at the time, I thought, okay, fine, I want my baby's lungs to work properly, although the frustration of knowing that the pressure on my little baby's brain was increasing day by day, as was the risk of permanent damage, and knowing that there was nothing that could be done for her until she was born - do I need to tell you how frustrating and heartbreaking that was to live through? I have since learned that steroids are often administered to accelerate lung maturation. My sister-in-law started contracting and dilating early in her third trimester with both her babies, and both times was given steriods to develop the lungs just in case the baby did come early. Why, then, did no-one offer me anything for my baby's lungs? I know it would only have made a difference of a few days, but considering my baby's condition, those few days surely could have made a difference. The hydrocephalus was not present at my 20 week scan, which means that it developed sometime in the 15 weeks following that, and when you're talking about a maximum of 100 days from perfectly healthy to seriously unwell, 8 days could surely make all the difference. Maybe those 8 days could have meant that my little girl would be walking by now. And it was probably a lot less than 100 days too - my NP who looked after me while I was pregnant said that the reason she ordered that last sonogram in which the hydrocephalus was detected was not to estimate birth weight, but it was because at my regular 33 week check-up, my measurements were off, when they had been perfectly normal up until that point. Anyway, every time I think about that, now with the knowledge that steriods are regularly used to develop lungs, it makes me so angry, and makes me wonder whether I should be doing anything about it legally. If there's a chance that my baby girl would not have developed cerebral palsy had she been born and treated up to 2 weeks sooner, shouldn't somebody be held responsible for that? I don't know.

Anyway. Back to the timeline. February 6th her lungs were deemed likely to be immature, so we went home and worried and prayed and worried some more. I finally managed to get hold of my mother in England on Tuesday morning by sending text messagess and IMs to my brother, sister and grandma asking them to tell her to call me (our calling plan does not include international calling - my mother calls me once a week on Sundays, and I hadn't told her anything the previous sunday because I didn't want her to worry until we knew for sure), so finally I was able to speak to my mother, and told her that the baby had hydrocephalus. Luckily, she had heard of it and knew what it was, so I didn't have to explain it to her. Thanks to several members of my family, my mother was on a plane the next day and was with us by Wednesday night.

I was scheduled for another amniocentesis the following Wednesday, which was February 15th 2006. They said that if the baby's lungs looked like they were mature at that pojnt then they would schedule me for a c-section that afternoon, but if not then we would go back to waiting. Thankfully, God knows better than any of these doctors, and in the early hours of February 14th, my water broke, and my sweet baby girl was born at 2:35pm on Valentine's Day, 2006. There never was a sweeter sound than that of Avery Marie Andersen's first cry. We didn't know what sort of condition she would be in when she entered this world, so to see that beautiful little girl kicking and screaming, and to be able to kiss her soft sweet cheek as my husband held her up to me, the world was suddenly a happy place again. No matter what was in store for us and our little girl, she was alive, she was breathing and she was moving! They took her up to the NICU after that, and as I lay in the recovery room after they'd stitched me up, I couldn't help but grin from ear to ear, and even now as I think of it, I still almost cry from joy.

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