This morning Blaise had her first taste of milk. Over the past few days, the amount of milk she receives through her feeding tube has been gradually ramped up (she's at 1.5ml/hr right now, up from 0.5ml at the first attempt) and so far she's dealt with those rates well. Given that, and also given that we need to make sure she doesn't unlearn how to feed orally, she was given just 3cc of milk today through a bottle nipple.
As with everything else that has been introduced, we were warned by everybody that this might not go well. Preemies often have a hard time coordinating sucking, swallowing, and breathing while trying to feed, so we had her nurse standing by to check her color, make sure she wasn't choking, and help us deal if she needed to spit up. As it turns out, she downed the whole amount like a pro. Erin held her for a while trying to get a burp out of her since she also probably swallowed a good bit of air, but mostly she just kind of sat there looking a little bit puzzled.
We are talking a VERY small amount of milk here, but we're excited that she was able to do this this morning. It's definitely good that she worked out how to eat this way, and giving her oral stimulation like this is vital to preserving her instincts for how to feed normally. Besides that, it just felt a lot more normal. Erin's been working so hard to keep up a good supply of milk for Blaise and it meant a lot to have her be able to use it so directly.
There's certainly bumps in the road coming. We know that at some point they'll find an amount of milk that she can't tolerate by enteral feeding. In fact, part of the point of that exercise is to find that 'ceiling' so that the doctors know the maximum amount they can give her to keep her small bowel healthy. I have to admit that I find that prospect pretty nerve-wracking...to work out where that level is, they have to push my daughter to her limit. She's a tough girl, but I hate the idea of stressing her out even though I understand that it's necessary.
Still, even though there remains a lot of room for backing off just as much as we move forward, being able to give her just a taste of milk was great. Fingers remained crossed all around, and we'll keep posting to let people know how she progresses.
Friday, January 16, 2009
Wednesday, January 14, 2009
I should know better....
First, I would like to report that Blaise has learned to play me. She knows when I really need to leave the NICU to get food or get home and she chooses those times to be the most alert and engaging and I can't drag myself away. Alternatively, that's when she starts crying. All of the nurses tell me to go ahead and they'll take care of it, but I can't walk away from my crying baby. She knows it, too.
Her tendency to seemingly respond to things people say to and around her is almost spooky. I know she doesn't understand a word we're saying. (I mean, really, I, of all mothers, know that.) But just today, her nurse asked if she was ready for a line-change and she nodded her head. Then, not five minutes later, the same nurse asked me if I thought Blaise looked more like me or like Ben. I said she had features of both of us, but that I thought she resembled Ben's family more. The little one chose exactly that moment to start to cry. I don't know why. Her dad's family are fine-looking people.
In response to requests from her fans, her photo site has been updated. I don't know where they found the pink letters outfit for her, but she was so cute in it, I almost forgave them the pinkness of it all.
And, finally, a medical update. The enteral feedings that they started and then stopped a couple of days ago were restarted yesterday morning, with a bit more success. They've even upped her intake to a whole milliliter an hour. Again, we shouldn't read too much into this, but it does mean that they will continue these tiny feedings for the time being. This is critical to keeping what's left of her small bowel functional and healthy.
Her tendency to seemingly respond to things people say to and around her is almost spooky. I know she doesn't understand a word we're saying. (I mean, really, I, of all mothers, know that.) But just today, her nurse asked if she was ready for a line-change and she nodded her head. Then, not five minutes later, the same nurse asked me if I thought Blaise looked more like me or like Ben. I said she had features of both of us, but that I thought she resembled Ben's family more. The little one chose exactly that moment to start to cry. I don't know why. Her dad's family are fine-looking people.
In response to requests from her fans, her photo site has been updated. I don't know where they found the pink letters outfit for her, but she was so cute in it, I almost forgave them the pinkness of it all.
And, finally, a medical update. The enteral feedings that they started and then stopped a couple of days ago were restarted yesterday morning, with a bit more success. They've even upped her intake to a whole milliliter an hour. Again, we shouldn't read too much into this, but it does mean that they will continue these tiny feedings for the time being. This is critical to keeping what's left of her small bowel functional and healthy.
Tuesday, January 13, 2009
New Videos!
I've just uploaded about 5 or 6 new videos to Google Video...I'll be adding them to my 'shared stuff' page (which is the link to the left) but it may take them a little bit to go live. My apologies in advance for some of them being a bit dark...the NICU light level remains variable and hard to control. These are pretty short clips, but hopefully they'll give you a sense of how much she's changed recently.
A steady eye and a rubber face
Besides Blaise's recovery from surgery, we've also been able to notice several very fun changes in her overall abilities as she continues to grow and develop. In particular, over the past day or two we've both found that she seems much more able to hold her gaze steady. Earlier, her eyes had a tendency to "float" a good bit, which is very typical for a premature baby. Now though, Blaise will look you square in the eye and just look at you for a bit. Granted, her vision is very blurry at this point. It's kind of funny how often the nurses remind me of this given that I'm a vision scientist, but I will also admit that it's hard not to get very excited when she looks right at you. Even if I'm just a blurred-out talking blob, I'm still glad she likes staring at me.
The second thing that many of her visitors and caretakers have remarked upon is that she seems to be developing a very expressive face. Blaise has a wide range of very funny facial expressions, including some impressive eyebrow tricks, a great little half-smile, and a full-face open-mouth grin that she wields very effectively when she wants extra attention. All in all, she's quite the little flirt and we're having great fun watching all these capabilities "come online."
Finally, to say a little more about the follow-up to yesterday's attempt to feed, it turns out that they're planning to try giving her just 4 hours of breast milk today. This is very much a game of waiting and tweaking the parameters of her care, so you may be hearing a lot about this for a while to come. Several people have invoked the "marathon, not a sprint" analogy to describe what she's doing right now, but I think it's even more accurate to say that it's like marathon training. At this point, a lot of what we're doing is laying the groundwork for things we'd like to have happen months from now. It can leave you feeling a bit like you're not making progress, but I get the impression that the real way to move forward here is to just keep building up steadily.
Last night, during her check-up in the NICU, we both noticed that Blaise stayed awake and alert, but hardly fussed at all. She just kind of sat tight and held Erin's hand the whole time. For a 35-week preemie, it seems a little bit like she's already working out how to be patient, too. Dad's working on that too.
Monday, January 12, 2009
The long road begins
Today, the doctors started enteral feeding with Blaise. This means that they began slowly giving her small amounts of breastmilk directly through the g-tube in her stomach. She was receiving 1/2 a milliliter an hour for about 6 hours today. They do this partly to determine how much function her remaining intestine has and also to prevent any further loss of function (use it or lose it, basically). This is a fairly major challenge for her and one that we didn't think they were going to attempt for another week or two. It was the first time we had tested her GI tract at all.
The results were neither great nor bad. After 6 hours, they stopped the feeding because she was losing as much fluid through her ostomy as they had put in, indicating that she wasn't absorbing much. On the other hand, she could have lost much more fluid, or it could have just sat in her stomach, which would have suggested other problems. None of the medical staff were surprised or upset by these results. Her nurses just seemed a little bummed, I'm sure because they really wanted to see her beat the odds. So did we, of course, but we also knew not to expect a miracle. The nurses and doctors all warned us many times going into this that the enteral feeding process with short bowel kids is a long and slow one. We'll try again in a little bit after we give her a chance to grow a little more. Importantly, Blaise was never uncomfortable or in any kind of distress during the feeding. She was really quite peaceful and rather charming to her visitors from Brown this afternoon.
Speaking of visitors, today was our first day since Blaise was born without any of her grandparents here. I know I had kind of mixed feelings about this because I wanted Ben and I to be able to spend time with Blaise without worrying about anyone else. (Note to Mom, Dad, Janet and Barry: I know you're going to say we shouldn't worry about entertaining you, but we do. We can't help it.) On the other hand, the moral support was nice to have, as was the help with the day-to-day things, since we're finding it very easy to neglect the laundry in favor of hanging out in the NICU. But never fear! Barry and Janet will be visiting again this weekend, as will Blaise's Uncle Jim, who hasn't had a chance to meet her yet. We know she's looking forward to seeing all of them.
The results were neither great nor bad. After 6 hours, they stopped the feeding because she was losing as much fluid through her ostomy as they had put in, indicating that she wasn't absorbing much. On the other hand, she could have lost much more fluid, or it could have just sat in her stomach, which would have suggested other problems. None of the medical staff were surprised or upset by these results. Her nurses just seemed a little bummed, I'm sure because they really wanted to see her beat the odds. So did we, of course, but we also knew not to expect a miracle. The nurses and doctors all warned us many times going into this that the enteral feeding process with short bowel kids is a long and slow one. We'll try again in a little bit after we give her a chance to grow a little more. Importantly, Blaise was never uncomfortable or in any kind of distress during the feeding. She was really quite peaceful and rather charming to her visitors from Brown this afternoon.
Speaking of visitors, today was our first day since Blaise was born without any of her grandparents here. I know I had kind of mixed feelings about this because I wanted Ben and I to be able to spend time with Blaise without worrying about anyone else. (Note to Mom, Dad, Janet and Barry: I know you're going to say we shouldn't worry about entertaining you, but we do. We can't help it.) On the other hand, the moral support was nice to have, as was the help with the day-to-day things, since we're finding it very easy to neglect the laundry in favor of hanging out in the NICU. But never fear! Barry and Janet will be visiting again this weekend, as will Blaise's Uncle Jim, who hasn't had a chance to meet her yet. We know she's looking forward to seeing all of them.
Sunday, January 11, 2009
The little things
One of the biggest issues that premature infants have is lung immaturity. This is not a problem Blaise has. She was born crying. But we didn't hear her cry for three days after that because she was on a ventilator after her surgery. Now, (bad mom alert) I love to hear her cry. It reminds me that, in a lot of ways, she's just a newborn baby and prone to the random fits of rage that newborns have.
I've also learned to change her diaper. I thought I knew a thing or two about diapers, but I didn't know anything about changing a diaper on a baby with an ostomy. I know most new moms would gladly have an army of nurses around to change their babies' diapers, but I get a charge out of being able to do something for her. So my perspective is a little skewed: crying and diaper changes make my day.
We're trying to make sure we do at least some of the things we would do if we had her at home. Ben sings to her a lot; I don't, for reasons that are obvious if you have ever heard me sing. We also read lots of stories to her, including favorites of ours from when we were little, like Paddington and Where the Wild Things Are. Blaise also gets lots of cuddle time with both of us. We're nowhere near normal, but we're trying not to forget what normal looks like.
I've also learned to change her diaper. I thought I knew a thing or two about diapers, but I didn't know anything about changing a diaper on a baby with an ostomy. I know most new moms would gladly have an army of nurses around to change their babies' diapers, but I get a charge out of being able to do something for her. So my perspective is a little skewed: crying and diaper changes make my day.
We're trying to make sure we do at least some of the things we would do if we had her at home. Ben sings to her a lot; I don't, for reasons that are obvious if you have ever heard me sing. We also read lots of stories to her, including favorites of ours from when we were little, like Paddington and Where the Wild Things Are. Blaise also gets lots of cuddle time with both of us. We're nowhere near normal, but we're trying not to forget what normal looks like.
Ben & Erin head for Cambridge
We left home on December 31st thinking we were heading to the hospital for a few hours and now, almost two weeks later, we're heading back. It's difficult to go home without taking Blaise with us. We're not far away (and we'll be here to visit all the time) but it still feels a bit like we're leaving her behind. We did get her bed a few more decorations though, including a wooden "B" painted with stripes just like the one on her bedroom door at home. We've been reading lots of Paddington stories too, so there will soon be a small bear from Darkest Peru joining her growing army of stuffed animals. Finally, the Steelers game starts at 4:15 today and I'm hoping Blaise can give me just a little bit of Terrible Towel-waving. There will definitely be video of that if it happens.
In other news, we had the chance to speak to one of the GI specialists who works with short-bowel syndrome at Children's. He gave us a lot of good information and also told us that they may try and begin some very minimal breast milk feeding on Monday. This is a LOT sooner than we thought, and so we're both excited and a little nervous. There's a very good chance it may not go very well at first, so we've just got our fingers crossed for Blaise. We'll be sure to update here when we know some more.
Finally, Blaise has 3 new friends! Sirisa Elise Cox, Auden Tai Tierney, and Erin Chaize have all been born to friends of ours in the past week. Sirisa and Auden just arrived yesterday (or close to it, we're waiting for more details) and Erin was born about a week ago. We may link to their blogs and photo sites as they come online...maybe a baby web-ring?
In other news, we had the chance to speak to one of the GI specialists who works with short-bowel syndrome at Children's. He gave us a lot of good information and also told us that they may try and begin some very minimal breast milk feeding on Monday. This is a LOT sooner than we thought, and so we're both excited and a little nervous. There's a very good chance it may not go very well at first, so we've just got our fingers crossed for Blaise. We'll be sure to update here when we know some more.
Finally, Blaise has 3 new friends! Sirisa Elise Cox, Auden Tai Tierney, and Erin Chaize have all been born to friends of ours in the past week. Sirisa and Auden just arrived yesterday (or close to it, we're waiting for more details) and Erin was born about a week ago. We may link to their blogs and photo sites as they come online...maybe a baby web-ring?
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