Mom asked me to give a little spiel from my perspective, so, hi it's Charlotte!
I'm home, I'm healthy, I'm doing great and I can't way to tell you all about my sweet Maisie the Great. She's gained a bit of weight (two ounces - 1lb, 15 oz) since the inflammation went down and she's brighter and more alert than ever before. That's still only four ounces more than her birth weight, but this is the first time her weight has gone up since she was two weeks old. Progress is progress, right? A couple of things have fallen into place and she's out of the incubator. Her eyes are developing normally, she's regulating her body temperature all by her wee self, and her blood oxygen levels are in the low 90s (the high 90s would be better, but it could be so much worse) so we're going ahead and taking her off the ventilator. Ventilation is good for preemies who don't secrete enough surfactant (stuff to help oxygen stick to the alveoli so it can be absorbed by the capillaries), but it also causes a lot of lung damage. The faster we can graduate her to the CPAP machine, the easier I'll sleep at night. The only concern we have right now is some weird bone stuff. Babies all have soft bones, but preemies more so, and Maisie's lactose intolerance is making it difficult for us to get enough calcium into her. She's got soft bones and they're a little bit bendy. She's bow-legged and her fingers are kind of deformed. We've started a new formula with a higher vitamin D supplement than the old one with the hope that her bones will get stronger and straighten out on their own. If not, she'll have to be braced or casted to straighten out the problem.
I think you know what I'm going to say, so I'm not going to say it.
Okay I'll say it.
We just have to wait and see!
October 10, 2009
Bad news Wednesday...
After a week of the vitamin D diet, she's not getting any better. In fact, the ortho is worried that she's getting worse because her bones are hardening but not straightening. So the supplements are gone and she's been fitted for leg braces. Looking back at old x-rays, the ortho is starting to think this is actually a birth defect overlooked in light of her other issues. I don't have the actual braces yet, but she's getting leg braces that look like that one on the left, and both hands will be casted to straighten out her fingers. She is very small to be bracing, but if we don't take control of this issue now it might get way out of control and prevent her from developing motor skills, sitting up, and walking. If those things are in the cards for her neurologically, we want to do everything in our power to help that happen. The other side of the coin is that, right now, she has soft bones and she's not going to be walking around anywhere anyway, so the bracing will require no surgery. Just time. Hopefully.In good news, Maisie is now up to two pounds, four ounces. In just a week she gained almost five ounces, which is amazing. She's on total parenteral nutrition (I think I called it something like intravenous nutritional therapy before, I was wrong. So many medical terms.) and is steadily gaining weight, which means we correctly diagnosed and treated the problem, and we've got one more hurdle under the belt.
October 14, 2009
Braces arrived today, we put 'em on, she hardly noticed. About ten minutes ago they took her to get her casts put on. The ortho said to plan on two weeks in the cast/braces, two weeks off, and then a follow-up evaluation. Depending on how she looks at the evaluation, she may or may not be braced/casted for two more weeks.
In other news, her blood oxygen levels are going down, and I don't need to tell you that's not good. This morning she went all the way down to 72%, and even though she was back up to 87% by lunchtime and 96% by 5:00 this evening. Even though she recovered, her nurse was sufficiently concerned to summon the pulmonologist. I was terrified she'd slap the ventilator back on her, but thankfully the pulmonologist did not seem to think it necessary. She did notice some other things we'd overlooked: slightly clubbed fingers, pursed-lip breathing, and cyanosis (blue-tinged lips). So the long and the short of it is the pulmonologist believes she has pulmonary interstitial emphysema. She's ordered an MRI of the lungs to confirm.
October 15, 2009
In honor of Maisie's two-month birthday, Charlotte wrote this beautiful letter to Maisie. This is the third in a serious for Maisie, to commemorate this traumatic time in her life. Charlotte wrote the first one the day she came out of a coma, and another on Maisie's one-month birthday. This is just so heartwarming and so perfectly captures their relationship. I had to post it.
Darling Maisie Adelaine,
Oh, my sweet Maisie girl. Your short little life has been a heck of a ride, but you are so strong and so full of life, even tethered to IVs and machines. Your eyes shine with a passion and a joy that I can't wait to get to know as you get bigger and stronger and your personality develops. I can tell that beneath your sleepy baby exterior lives a child of the same fiery, stubborn, vivacious stuff that I'm made out of. You are only two months old, but I can already tell you have my crazy spirit and I cannot wait to get to know you better.
Maisie, you are the love of my life. You are my soul sister, my soul mate, and more than anything on this Earth I cannot live without you. I love you, now and forever. I will go to any and every length to protect you and take care of you. Your medical conundrums are nothing compared to my determination to raise you into the beautiful young lady I know you will one day be.
Happy two months, my love! Here's to many dozens more.
Love,
Mama
October 16, 2009
It's not pulmonary interstitial emphysema! And thank goodness, because that is MIGHTY hard to spell! Maisie is exhibiting classic emphysema symptoms because her pulmonary function is poor. Her individual alveoli aren't working all together all at the same time. This is another instance of neurological discord in her tiny little body. Her throat is not being told how to swallow, her kidneys are not being told how to kidney, and her lungs aren't breathing all together. Right now, we're not going to do anything. She's two months old. Two pounds. She's not doing anything, and she's getting plenty of oxygen for what she is doing. It's a miracle that she's staying on CPAP, and that's enough miracle for me.
October 24, 2009
Well, today's the big day! Maisie is out of the hand casts and the leg braces. The orthopedist came by and gave her a preliminary evaluation. Her shape and alignment looks great, but anything can happen in the next two weeks.
Her oxygen levels are staying pretty steady in the high 80s. In other news, her kidney function is in decline. Her BUN to creatinine ratio is way off. We've known almost from the beginning that her kidney function is limited and irregular, so hopefully time will tell that this is just an episode, and it will end. Hopefully not one of many.
October 31, 2009
Happy Halloween! Charlotte and I went shopping for some decorations to make Maisie's room a little brighter. Her favorite is the stuffed spider we found at the dollar store. We tied him to the side of her bassinet and she stares at him endlessly. Her weight is up to 2.5 pounds. She's gaining, but slowly. So far she is still on total parenteral nutrition because the nephrologist is afraid her kidneys won't be able to handle formula through an NG tube, which is the next step when her creatinine levels normalize.
In other news, Charlotte is doing great. Her pain is virtually nonexistent, and she is making great strides in physical therapy.
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