The meltdown has begun, and I am powerless to stop it.
I can't say I'm surprised by it. It has been a pretty meltdown-free week. It was bound to happen sometime.
And it's here.
It's been a full day, emotionally. Coffee with a friend this morning, with some convesation and tears over our babies. Phone call from the geneticist with some 'encouraging' information. Phone call from the developmental pediatrician with some insight into what 'extreme feeding measures' are, and some helpful feeding information. Email from the Heartstrings lady with a possible 'support mom' match. Email from my Bible study core group leader about a lady in our group who's been through something similar. Texting with my dear friend who's moving to Japan in a month- she will probably never get to meet Elliana.
Long day. Many things pulling at my heart. The tears started with one of the texts from my friend, and it was as if someone opened the floodgates.
Enough about the tears. Maybe remembering the 'encouraging' things from the day will help. (I sort of want to roll my eyes and gag over that last sentence. OK - I did roll my eyes and gag.)
The geneticist called me today. She's the one I've emailed a couple times - she said she'd do a little research for us and get back to me. She actually called me today. (Have I mentioned how fantastic she is?? I really hope Elliana gets to meet her one day.) She told me that she'd been looking through journals and articles, but there wasn't a whole lot of information to be found. However, she did find an article published in 2002 (I think) about 3 infants who had been diagnosed with non-mosaic tetrasomy 9p. The non-mosaic part is important - mosaic tetrasomy 9p means that only some cells in the body have extra genetic information. Non-mosaic tetrasomy 9p means that all of the cells in the body have extra genetic information. The prognosis is poorer for non-mosaic chromosomal disorders.
Anyway, the article she found had information about 3 babies with non-mosaic tetrasomy 9p. I can't remember everything she said, and hopefully, I won't butcher what she told me with my lack of brain function right now. Each of the 3 babies died young - one lived 2 months, one lived to age 3, and I'm unsure about the third one - might have been 9 days? Then she helped me understand why these children die. I understood to some degree before, but now I understand more. I can't tell you how much this helps me. Usually, these children cannot survive because their lungs and/or kidneys are underdeveloped and not working properly. This doctor even explained to me how those 2 things are related - it all has to do with how a baby breathes and pees in the womb. If the kidneys aren't functioning well, they don't produce enough urine, which results in decreased amniotic fluid. If there isn't enough amniotic fluid, then the lungs don't develop properly. It's almost as if the womb is the baby's 'life support system'. Birth sort of takes the baby off of life support, and if the lungs and kidneys are not functioning well, the baby can't survive.
Here's the - dare I say it? - good news. My (well, Elliana's) amniotic fluid measurements have been fine. At this point, we have no reason to believe that her lung or kidney function will be compromised. And the cynical part of me thinks that even writing the first 3 sentences of this paragraph has jinxed us - and at my ultrasound on Wednesday, we'll find decreased amniotic fluid.
The end of my conversation with the geneticist went something like this: it's ok to hope. There's no evidence at this point that Elliana will live just a few hours or a few days. She could live 2 months. Or maybe even 3 years.
But... it doesn't change the end. We won't have much time with her. Each day, each hour, will be a gift.
The developmental pediatrician (who called me at 5pm on a Friday, by the way - she's wonderful) answered more of my questions - mostly about what our feeding options are. We really won't know the best way to feed her until she's born. If she just has the cleft lip, breastfeeding is possible, and bottle feeding is a good second option. If she also has a cleft palate (and oh, how I am praying she does not have a cleft palate), then breastfeeding becomes significantly less of a possibility. Bottle feeding becomes more of a possibility. But we've done the cleft palate deal once already. We know firsthand how difficult the suck/swallow reflex is with a cleft palate. And aspiration is a risk as well. So, an ng tube becomes the next option. We've done that, too. It's manageable. Not fun, but we could do it.
This is the part that's more difficult to think about. On our birth plan, there's a section for 'feeding'. And we're supposed to indicate what measures we want the doctors to take where feeding is concerned. I was really confused about this for a while - because why would we NOT want to do anything we could to meet Elliana's needs?? This doctor explained it - inserting an ng tube in a terminally ill infant can be considered an 'extreme measure'. If we decided not to take this 'extreme measure', knowing that Elliana couldn't get the nourishment she needs without an ng tube, then we would be bringing her home and bottle-feeding her the best we could. It would sort of be a way of letting 'nature take its course'. I have a really difficult time thinking about going with that option. Jason and I haven't talked about it yet. It's part of that great big, awful conversation we need to have, making life & death decisions about our daughter.
There is so much more I could 'journal' tonight, but I think I'm done for today. Spent.
The Heartstrings support mom and the lady in my Bible study core group... are the same person. I think. That's another story in itself.
And my friends going to Japan. Can't go there again tonight.
Time to put down the computer and enjoy Elliana's kicks and hiccups. :-) And reconsider going shopping with my mom to get Elliana a few outrageously girlie pink gowns. I had written off the whole shopping experience after my hopes were dashed at the last ultrasound, but now...
Maybe she'll live longer than we were originally told?
It's happening again. I'm getting my hopes up.
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