Blaise was one week old yesterday and it's been the longest but also the most amazing week of all of our lives. It's been incredible to watch her go from desperately sick to strong and beautiful in so short a time. We all still have a lot of work to go and we know there will be some bad days mixed in with the good, but for now, we're happy to watch her grow and heal. She has hit her "goal calories" on her IV nutrition, so she should begin gaining weight and getting stronger over the next few days and weeks.
In an interesting coincidence, there was a story in the Boston Globe this morning about a treatment being pioneered at Children's Hospital Boston that helps kids with short bowel syndrome avoid the liver damage that tends to come with long-term IV nutrition. This is a treatment we've talked with Blaise's doctors about and she may become a good candidate for it at some point in the future, although it's too soon to start her on it now. It's also very inspiring to see pictures of the little girl in the article jumping around like a normal toddler in spite of the IV she has to wear all day. You can read the article here.
I would also like to direct your attention to the links to the left of the posts, which now include videos and pictures of Blaise. We don't take many photos because the light from the flash is kind of out of place in the NICU, but we'll try to keep updating those. She gets cuter all the time!
Friday, January 9, 2009
As of yesterday, Erin & I have been married for 4 years. We spent last night with Kathie and our friends Kate & Andrew at their apartment in Arlington, where they'd cooked dinner for us. It was a wonderfully low-key anniversary dinner and I think both of us felt a lot better for sitting down together to eat some real food for the first time in a few days. We'd joked weeks ago that this was our last anniversary without a baby-sitter...turns out we were wrong, of course, but as Erin said recently "We left Plan A in the dust a while ago!" Blaise at least has the best babysitters in the world to look out for her while we go unwind just a little.
We've written a lot about Blaise here already, but I want to tell all of you how amazing my wife is too. When we met 9 years ago, there's no way we could have guessed that we'd be here someday, and we had no way to know what being together through such a difficult and frightening experience would be like. Now that we're here, I'm amazed at my good fortune. My wife is the strongest and most loving person I know. The past four years have been filled with love and laughter, both of which have served us well during the past week. I know she'll be embarassed if I write more, so I'll just stop here. Thanks , Erin.
We've written a lot about Blaise here already, but I want to tell all of you how amazing my wife is too. When we met 9 years ago, there's no way we could have guessed that we'd be here someday, and we had no way to know what being together through such a difficult and frightening experience would be like. Now that we're here, I'm amazed at my good fortune. My wife is the strongest and most loving person I know. The past four years have been filled with love and laughter, both of which have served us well during the past week. I know she'll be embarassed if I write more, so I'll just stop here. Thanks , Erin.
Wednesday, January 7, 2009
Meeting with the Doctors
We had a meeting with Blaise's doctors today to discuss her status and the path we'll be taking from here. We weren't really told anything we didn't already know, but it's still hard to hear.
The state of her intestines is not good. She has very little in the way of healthy small intestine and we're waiting to find out more about her large intestine. The problem here is that the small intestine is responsible for absorption of most nutrients and fluids, so getting adequate nutrients without much small intestine is very difficult. The next two big steps for us involve finding out how well her remaining small intestine absorbs nutrients and determining how much of her large intestine is functional. For the time being, she's receiving all of her nutrition through IV. The timescale for this is many weeks because our first priority is making sure she's as big and strong as she can be before adding any more stress. We also need to be sure that she's recovered well from her surgery. We're taking our cues from her.
In less medical news, we're pleased to report that although she's the youngest baby in her part of the NICU, she doesn't let the others push her around. She's got quite a voice and can out-yell the other babies. When she's quiet and alert, she has a hilarious set of facial expressions, including this funny little smirk that makes us suspect that we're not in on the joke. She loves to be swaddled, held and sung to and we read to her all the time. We've also tried explaining such important life-lessons as the difference between a standard crossword puzzle and a cryptic, how many Super Bowls the Steelers have won and why she can go to any college she wants as long as its not CalTech.
The state of her intestines is not good. She has very little in the way of healthy small intestine and we're waiting to find out more about her large intestine. The problem here is that the small intestine is responsible for absorption of most nutrients and fluids, so getting adequate nutrients without much small intestine is very difficult. The next two big steps for us involve finding out how well her remaining small intestine absorbs nutrients and determining how much of her large intestine is functional. For the time being, she's receiving all of her nutrition through IV. The timescale for this is many weeks because our first priority is making sure she's as big and strong as she can be before adding any more stress. We also need to be sure that she's recovered well from her surgery. We're taking our cues from her.
In less medical news, we're pleased to report that although she's the youngest baby in her part of the NICU, she doesn't let the others push her around. She's got quite a voice and can out-yell the other babies. When she's quiet and alert, she has a hilarious set of facial expressions, including this funny little smirk that makes us suspect that we're not in on the joke. She loves to be swaddled, held and sung to and we read to her all the time. We've also tried explaining such important life-lessons as the difference between a standard crossword puzzle and a cryptic, how many Super Bowls the Steelers have won and why she can go to any college she wants as long as its not CalTech.
Tuesday, January 6, 2009
A Word about the NICU
Since January 1st, Erin & I have spent a great deal of time in the NICU at Children’s Hospital Boston. It’s also Blaise’s home for now, and so I thought I should try and say a bit about what it’s like. Of the many things that we’re learning to adjust to, the nature of parenting in the NICU will likely be an ongoing lesson. We’re still in the early stages of that lesson right now, and so I wanted to try and capture a bit about what the room is like before we’ve learned so much it becomes the new routine.
First of all, the NICU is essentially a city unto itself within the boundaries of Children’s. It has about 60 beds and offers care to babies with an incredibly wide range of difficulties. Some of the babies there simply arrived early and need to spend some time getting bigger and stronger. Others have had surgery or an acute medical problem during the first year of life and need to recover. Still others were born with systemic problems like cystic fibrosis or Down’s syndrome that will require lifelong care. In the grand scheme of the NICU, Blaise occupies a fairly unique niche: all three of those apply to her.
Her bed (or “isolette”) is at the end of a row just to the left of the entrance. It’s basically a plexiglass box that sits on top of a stand that allows for adjustment up and down. Several mattresses sit inside the box, with pretty sheets, pillows, and blankets inside for her. The box itself has two portholes on the longest sides so you can talk to her or reach in to touch her, and you can also raise the entire lid to make all this easier. The isolette can serve as an incubator, too. Blaise has shown us that she can maintain her body temperature without help, so she’s not being kept at the “toasty” setting anymore. At first though, when you’d reach in to hold her hand or touch her head, it felt a bit like a small oven.
Next to and around the isolette are the many monitors, pumps, and amplifiers that allow her doctors and nurses to listen to what her body is doing and provide it with what it needs. As a parent in the NICU, you immediately develop a very uneasy relationship with all of this equipment. IV lines are keeping your baby healthy, but look like they hurt her and thus anger and annoy you. The main monitor displays three traces describing her pulse, her respiration rate, and the amount of oxygen in her blood, providing the blessing and the curse of too much information. Then, of course, there are the many alarms. At any given moment in the NICU, there is bound to be at least one or two monitor alarms going off. They make noise for all kinds of reasons, most of which are benign. A baby’s heart lead slides off her chest a bit (or in Blaise’s case, she pulls it off) and loses good contact with the skin, for example. The monitor only knows that the voltage it reads off at the skin dropped to almost nothing, so it beeps. For a day or two, Blaise’s blood-oxygen saturation was very high, probably because she was being given supplemental oxygen on top of fairly healthy lungs. The monitor only knows that the amount of light reflected and scattering off of the blood circulating through her fingers is “at ceiling” and not budging. This is a sign that a sensor may be broken or shorted, so it beeps. You learn these things, but Erin & I have yet to really convince ourselves that beeping is okay. I doubt any of the parents there really ever do. The nurses can silence any of the alarms from multiple locations in the room, and they do it with an efficiency that suggests to me that it must be one of the first things they are trained to do in the NICU.
Speaking of the nurses, we’ve found them to be uniformly wonderful. Actually, “uniformly” may be exactly the wrong word to use since they each have a very particular style. Without naming names, Blaise’s nurses range from being a bit on the dramatic side, to being remarkably calm and soothing (both to her and to us), with all kinds of variation in how gossip-y, funny, and quick they are about things (some of them are VERY fast). What does not vary is their dedication to helping us be parents in the NICU. If we want to hold Blaise, it happens right away, despite the fact that it’s currently a bit of a production to move her and all her lines and leads out of the bed and into Mom or Dad’s arms. Any questions we have get answered immediately, or they page the person who can help. Soon, they’ll help us learn how to do some of the many things Blaise needs, including changing her diaper and helping with her line changes and baths.
Besides all that, there are the little things. You cover your hands in Purell before you go in the doors of the NICU and habitually re-apply it while you’re there. You read storybooks through phone calls and monitor alarms. The local light level changes seemingly at random, a feature of the room I’ve yet to understand. There always seem to be either too many chairs or none at all. Still, despite how strange all of this must sound, there is a lot of room to make the NICU feel a bit like a home. Blaise has a growing library of books under her bed, and a polar bear, a bunny, and a doll to keep her company in the isolette. (The bear is named “Atka” and the doll is named “Olivia Hope.” The bunny has no name as yet, but I suspect it may go by Marvin.) We’re planning to bring a wooden letter B for the lid of her box, and a Terrible Towel is en route as well. Blaise has been wearing a hat made for her by our friend Jenny, and will probably have a Red Sox blanket in there too as soon as we get home to get it. It’s not the bed we were hoping to have ready for her, but we’re making sure it’s hers (and ours).
I may try and write a bit more soon, especially as we get more used to how all of this works. Maybe
Let the photos begin
I'll set up a proper Picasa gallery soon, but here are a few pictures to get us started.
One of those days that's a long week
Many people have a lot of expectations about how their babies will be born and, once you're expecting a baby, you start thinking about your preferences for birth. Any doctor, nurse or midwife will tell you, though, that those are just preferences and that you can't expect everything to go exactly according to plan. Nothing hammers that lesson home quite like having almost nothing go according to plan.
Blaise was due February 20 and, until December 17, we had no real reason to expect that ours would be anything other than a typical birth at our local community hospital. I had been totally comfortable with no signs of any problem and Blaise was an active, healthy-seeming fetus. Then our December 17 ultrasound showed that she had some kind of intestinal blockage. We had been told that this put us at risk for premature labor and also that we would have to deliver at a major hospital with a high-risk specialist. We knew she would need surgery shortly after she was born. This was very frightening news to us, but we began the process of adjusting to the new plan.
Starting around December 28, I was feeling more and more uncomfortable and by the 31st, it was bad enough that we went to my doctor to get things checked out. Although I was not quite 33 weeks pregnant, I was measuring at 39 weeks, suggesting that something was wrong. She sent us to Brigham and Women's so we could see a high-risk specialist right away. The specialist ordered another ultrasound and found that the problem with Blaise's bowel was much worse than it had been only 2 weeks before. We were admitted to the hospital for steroid treatments (to help her lungs develop) and for 48 hour observation, but they didn't think it was likely that we would have to induce labor or do a C-section to intervene.
I woke up early on the morning of January 1 feeling more uncomfortable and having small contractions. Then, at about 8:15, my water broke on its own and I was transferred to the Labor and Delivery ward. Based on the strength of the contractions and other signs, we thought we were settling in for a long, normal labor. At about 10, I told Ben to go get some breakfast. Less than 5 minutes later, a startling number of doctors appeared in my room and told me that the baby was in distress and they were taking me for an emergency C-section. As they wheeled me out of the room, I threw my cell phone at the nurse and told her to call Ben and tell him to come back. He made it back in time to be with me when Blaise was born at 10:47 AM. She was yelling her head off, which might be the best sound I have ever heard.
Ben got to hold her very briefly before she was taken to the NICU at the Brigham, where the pediatric surgeon took one look at her belly and decided to take her for surgery immediately. They brought me up to hold her for a few minutes and then Ben went with her to Children's for the surgery. During surgery, they discovered that the intestinal blockage had caused what is called a volvulus, meaning that the intestine twisted on itself and cut off its own blood supply, causing the tissue to die. As a result, Blaise has very little small intestine and a condition known as short bowel syndrome. For now, she will have to receive all of her nutrition through an IV. The surgery was also very hard on her and she had to be resuscitated during the operation. When we were able to see her again, she was on a ventilator and receiving a number of medications. Frankly, things were pretty bleak.
Ben's parents arrived that night and mine came in to town the next morning. By the next morning, she was looking stronger and within a matter of days, she was breathing on her own and off almost all of the medications. As of today, they are no longer using the incubator to help regulate her temperature, as she seems to be doing that on her own. Aside from the problem with her intestines, she is very healthy and has been described by her nurses as "a spitfire" who "has definite opinions." She's proven to us that she's one tough kid and we're very, very proud of her. The problems with her intestines are quite serious and will require a lot of maintenance and treatment. She may never be completely off IV nutrients, but I think all three of us are determined to work with what she has.
I'll post links to photos and videos soon. I just wanted to get the (abbreviated) story up so that everyone has some sense of what's going on. I promise more fun stuff mixed in with the serious stuff. There's a lot of serious stuff, but she's also darn cute and makes us laugh a lot.
Blaise was due February 20 and, until December 17, we had no real reason to expect that ours would be anything other than a typical birth at our local community hospital. I had been totally comfortable with no signs of any problem and Blaise was an active, healthy-seeming fetus. Then our December 17 ultrasound showed that she had some kind of intestinal blockage. We had been told that this put us at risk for premature labor and also that we would have to deliver at a major hospital with a high-risk specialist. We knew she would need surgery shortly after she was born. This was very frightening news to us, but we began the process of adjusting to the new plan.
Starting around December 28, I was feeling more and more uncomfortable and by the 31st, it was bad enough that we went to my doctor to get things checked out. Although I was not quite 33 weeks pregnant, I was measuring at 39 weeks, suggesting that something was wrong. She sent us to Brigham and Women's so we could see a high-risk specialist right away. The specialist ordered another ultrasound and found that the problem with Blaise's bowel was much worse than it had been only 2 weeks before. We were admitted to the hospital for steroid treatments (to help her lungs develop) and for 48 hour observation, but they didn't think it was likely that we would have to induce labor or do a C-section to intervene.
I woke up early on the morning of January 1 feeling more uncomfortable and having small contractions. Then, at about 8:15, my water broke on its own and I was transferred to the Labor and Delivery ward. Based on the strength of the contractions and other signs, we thought we were settling in for a long, normal labor. At about 10, I told Ben to go get some breakfast. Less than 5 minutes later, a startling number of doctors appeared in my room and told me that the baby was in distress and they were taking me for an emergency C-section. As they wheeled me out of the room, I threw my cell phone at the nurse and told her to call Ben and tell him to come back. He made it back in time to be with me when Blaise was born at 10:47 AM. She was yelling her head off, which might be the best sound I have ever heard.
Ben got to hold her very briefly before she was taken to the NICU at the Brigham, where the pediatric surgeon took one look at her belly and decided to take her for surgery immediately. They brought me up to hold her for a few minutes and then Ben went with her to Children's for the surgery. During surgery, they discovered that the intestinal blockage had caused what is called a volvulus, meaning that the intestine twisted on itself and cut off its own blood supply, causing the tissue to die. As a result, Blaise has very little small intestine and a condition known as short bowel syndrome. For now, she will have to receive all of her nutrition through an IV. The surgery was also very hard on her and she had to be resuscitated during the operation. When we were able to see her again, she was on a ventilator and receiving a number of medications. Frankly, things were pretty bleak.
Ben's parents arrived that night and mine came in to town the next morning. By the next morning, she was looking stronger and within a matter of days, she was breathing on her own and off almost all of the medications. As of today, they are no longer using the incubator to help regulate her temperature, as she seems to be doing that on her own. Aside from the problem with her intestines, she is very healthy and has been described by her nurses as "a spitfire" who "has definite opinions." She's proven to us that she's one tough kid and we're very, very proud of her. The problems with her intestines are quite serious and will require a lot of maintenance and treatment. She may never be completely off IV nutrients, but I think all three of us are determined to work with what she has.
I'll post links to photos and videos soon. I just wanted to get the (abbreviated) story up so that everyone has some sense of what's going on. I promise more fun stuff mixed in with the serious stuff. There's a lot of serious stuff, but she's also darn cute and makes us laugh a lot.
Saturday, January 3, 2009
She's here!
Well, Blaise was scheduled to arrive in mid-to-late February, but she decided to arrive a little early. She was born by Caesarean section at Brigham and Women's Hospital on January 1, 2009, at 10:47 AM. We have a very long story to tell about her arrival and will be regularly updating about her status, but for now, here's a video of our beautiful baby girl.
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