Many people have been inquiring as to how we and the girls are doing. So, for several nights in a row, Matt wrote a long, detailed update, and I sent it to 70 family and friends early on Wednesday morning (3/23). Here's his "opus:"
Hello,
Nancy and I wanted to respond and update the many people that have extended their best to us over the past week. We are sincerely touched by your concern, your hope, your help, and your prayers. I hope to go into more detail and send updates more often, but please understand how difficult that is at the time. Nancy and I are first and foremost responsible for doing everything we possibly can for the benefit of our children, and it is a 24 hour a day job to keep us all healthy right now, although it will get easier. More on that later. Getting to the point, here is the overview of where everything is at.
What Happened:
Just over a week ago, on Sunday March 11, Nancy went into preterm labor. A "normal" full term pregnancy is about 40 weeks long. However, in a twin pregnancy, a full 40 week term can actually become stressful or even hazardous to both twins and the mother. The short version is that there is a limited amount the body can support, and sharing that much nutrition, blood and oxygen among three people gets difficult. It is not uncommon for twin pregnancies to come earlier than a 40 week term. This can be either by a scheduled delivery(as a precaution), or as a result of naturally occurring preterm labor. As a precaution for the children and the mother, we were scheduled to perform the former at 38 weeks. Instead, what happened was the latter, at 28 weeks.
Hazel Annette and Abigail Jeanne were born at 2:44 and 2:45 AM on Monday, March 12, 2012. They weighed 2'11" and 2'8" at birth, and measured 15 in and 10.75 in long. They were stabilized and taken to the Neonatal Intensive Care Unit (NICU), while Nancy completed post operative procedures from C-section delivery and went into recovery. (Note from Nancy: the girls' middle names are from their grandmothers ... Annette is Nancy's mom's and Nancy's grandmother's middle name; Jeanne is Matt's mom's middle name and Matt's grandmother's first name.)
Both of the girls are doing well, and Nancy is recovering steadily. We have been told by the doctors that we should expect for the twins to remain in the NICU until approximately their original due date (which was May 16). The girls were 12 weeks premature, so we could be visiting the NICU anywhere between 8 to 12 weeks depending on their health and progress. We hope to take them home sometime around the middle of May.
How Mom and Dad are Doing:
- Caesarean sections are common these days, nevertheless, they are major abdominal surgeries. So, while Nancy is doing very well, it will take some time recover enough to do all the things she's used to doing. She is restricted from driving for at least the rest of this week, and cannot lift anything more than 10 lbs until her core can heal up enough to handle more than mild strain (she was given this restriction for 6 weeks). I'm doing most of the menial duties to keep her as rested as possible, and both our parents have done a great deal to help us out these first two weeks so we have as little to worry about as possible.
- It is very difficult to leave your newborn children every day. While most people spend 3-4 days in the hospital very near to their newborn and then take them right home, Hazel and Abigail (or Abby) are relatively isolated in a controlled access NICU. They are kept inside an incubator/isolette, and separated from contact most of the day to minimize risk of infection, regulate temperature, and otherwise give them an environment as safe and similar to a womb as possible. Since Nancy was released from the hospital last Friday, we now drive around 20 miles one way, daily, from our house to the hospital. We can touch the girls, help take their temperature, and change diapers, but only during their regularly scheduled checkups that happen every three hours. At this stage, we can also hold them for about an hour or two per day outside the isolette so they can have the clinically noted benefits of skin to skin contact (called "kangaroo care"). We perform a full surgical scrub prior to entering the NICU whether we arrive at a time we can touch them or not. However, we are careful to give them only the stimulation they are currently capable of handling, as advised by the very capable NICU staff. Most of what the girls do is sleep, eat and breathe. For Nancy and I, we take an attitude of "the dude abides," and do our best to take care of each other while the girls grow strong enough to come home. I noted to Nancy that I spent just over 12 weeks in boot camp, and that was the conservative estimate for the time in NICU we'd all have to endure. It's not really that long, but it can feel pretty arduous. All of this has been so sudden that we've mostly been living very much in the now. We haven't been able to look into the future far enough to feel overwhelmed. Mainly we're just keeping up with ourselves from insurance form to insurance form, pump to pump, meal to meal, and day to day. The only time we've felt overwhelmed/panicky is when we're exhausted, so we've made a point to be in control of that. We've got a strict schedule to get the work done, get enough rest, and keep ourselves from getting sick.
- Our daily schedule is actually sort of rigorous, mainly due to feeding cycle that any parent is familiar with. The American Academy of Pediatrics recognizes several benefits from breastfeeding. For a premature baby, those benefits are considerably larger and more dramatic. The term we continually hear from the staff here about mother's milk for a preemie is "like gold." Therefore, Nancy is just as busy feeding the girls as any mother would be at home. Every 2-3 hours we pump, bottle, freeze and store the milk for transport to the hospital. All the gear is washed after each pump and sanitized every 24 hours. We barely have enough time between those periods to do some basic home maintenance, eat meals, feed cats, make notes in a journal, fill out insurance paperwork, and catch enough sleep to keep us from getting ill. Nancy can get several hours straight at night, as well as catch a few hourlong naps here and there while maintaining the feeding schedule.
All About the Girls:
- Hazel and Abigail/Abby were known as twin A and twin B for the first few days of their lives. Nancy and I were down to about 10-12 names at the time they were born, assuming we had several more weeks to decide things. In the hospital we were asked about it no less than 10 times per day, but as much as we wanted to discuss it in depth and make a decision, the first several days in the hospital were a total blur, and we were far too exhausted to discuss it much more than a few minutes a day (quite literally). As things settled into a more manageable routine and our fatigue lessened, we were able to narrow it down to our favorites. Near the latter half of Nancy's hospital stay, NICU staff informed us that the girls were stable enough that we would be able to hold the girls for a short time. So, we decided to hold each of the girls to see if the names we liked "felt" right. After that, we visited them once more to ask them if they were ok with the names we favored. They seemed quite amenable when we asked, so we informed the hospital staff the next morning to get the birth certificates in order.
- Premature birth is well studied, and there are many advanced statistics to describe it. Without getting into the heavy math on it, there are several practical takeaways. Twenty-four weeks is a big deal, and 28 weeks is a very big deal. For surviving children, many of the toughest issues with preemie birth correlate to 22-25 weeks. By reaching the 28th week of gestation, Hazel and Abigail had developed most of the important systems they need to a relatively mature point, and their odds of facing the some of the most dangerous challenges dropped off considerably. What is in front of them is still very challenging, but statistically there is very good reason for confidence.
- For what is still in front of them, however, the director of NICU gave us some good advice. The director is a keen eyed woman that exudes perception and a high level of attention. She indicated that the natural progression for the babies is to take a step forward, then two steps back. After they've done that a few times, they will take one step forward and one step back. Following that, I guess you get the picture. They will move backwards some, and once they move steadily forward, it is still a marathon and not a sprint. We should expect some setbacks, and the only main concern is whether they don't recover from a setback. That has proven to be very true and a comfort so far. In the 10 days the girls have been here, they have lost weight, which is normal and a good indicator that their livers are in good working order. They have also just started to regain the weight they lost, and are within 3 ounces of reaching their original birth weights. Both girls have suffered from mild jaundice, also a very common issue at this stage. They responded to therapy, eliminated the jaundice, and are currently continuing to hold it off. Both girls have been feeding steadily, and there has been a gradual increase in the amount they are fed every day. Hazel and Abby also graduated from a ventilator to room quality air on a CPAP (a type of breathing therapy) about a day or two into their hospital stay, and just today - Wednesday - (at 10 days old) were switched to a nasal cannula (the one with the prongs in the nose), so we can now see their faces (and, of course, they are very cute). Hazel also had her IV taken out last night (Tues), and Abby's will be taken out in the next day or two. Heart scans and brain scans, at this point, also continue to be clear. Overall, we've seen steps, backsteps, and a few times of jogging in place. Fortunately, they have encountered several of the common issues and done very well in advancing through them.
- Apart from raw statistics, the doctors and nurses are very pleased with how active the girls are, and how rigorously they respond to beat the common issues. We continue to hear them described by the staff as "very vigorous little girls," "feisty," "progress is stellar," and several other glowing descriptions. Hazel and Abigail are very determined, which may be the best indicator of all. While we expect to be confronted with normal problems, we've been thrilled to see how strongly and swiftly the twins tend to work through them. The time it took to start gaining weight was shorter than initially expected, they are moving very steadily up in feedings and tolerating it well. They handled the jaundice in short order. Their respiratory progress in particular has been pretty aggressive. In the sage words of L.L. Cool J, "I'm gonna knock you out, Momma said knock you out."
- Pictures, pictures, pictures. As they say on the internet, "pics or it didn't happen." We do have pictures of the girls, but Nancy and I have some concerns. We are a little protective of the girls right now, and would like to focus on providing them as much as we can for feeding, and as much "kangaroo care" as they can get handle. Any time spent taking, organizing, and sharing photos (while it should be easy) is consistently complicated by technical, format, network, and user error type issues. Labeling and commenting them takes time, and time in tech support is time away from Hazel and Abby. Please be patient while we get that together, and understand that we are in fact taking photos and notes we will begin to share. Also, while Hazel and Abby are beautiful, they are also vulnerable and look that way. Up to now, I can (though I wouldn't) hold their heads and torsos in a single hand. They have multiple tubes and wires coming out of places, including, as of yesterday, a head strap and nosepiece for the CPAP machine that obscured most of their faces. It is not the type of picture we want on Facebook or a company intranet. We're urging everyone to use good judgment about that, and understand that we will feel a lot more like sharing photos the stronger they are and the further that dangers are behind them. Last of all, we would like to be sensitive to anyone else that has experienced something like this, especially if they have lost a child. We do not want to put anything out in a forwarded set of photos that would cause distress to someone sensitive to this sort of thing. We are happy to share, and we are fine if you do, just keep it in perspective and use your heads. This is me with my Dad hat on ;-)
- Personalities: Hazel likes to kick, Abigail likes to squirm. I've heard three types of cries from Hazel, one of discomfort, one distress, and one feisty mad. Abigail has three I've heard as well: a very delicate little squeal of protest, as well as the distressed and a feisty mad ones too. When you change Abigail's diaper, she'll often cooperate with you by extending or tucking her legs when you need to maneuver the diaper around legs and wires and tubes. Hazel mostly sticks her legs straight out and holds still until you've got her fastened up again. Abby likes to sleep all tucked in and curled up. Hazel is a casual sleeper that likes to stick a leg out, or throw her arm up over her face with her elbow pointed out. Both the girls really like naptime on Mom when they can be held. Their heart rates are steadier, there respiration rates are steadier, and their oxygen saturation goes up and holds there longer. Both girls kind of like my singing and humming. It settles them a bit when they are a little agitated. Both girls like grabbing their facemasks when they are initially trying to get back to sleep. Hazel fusses with her tubes and wires, and pulls on them when she's not happy. Abby tries to ignore them, and will do so as long as she can get nice and still. Hazel likes to run up front. Abigail starts slow, gains momentum and finishes ahead. Both of them are active and responsive with us and all the attending NICU staff.
A note on the Hospital and NICU:
We've been very impressed with St. David's and their staff. I was particularly impressed with Dr. Christy Capet, who delivered the girls. We've both been very happy with how balanced the nursing staff is in their professional demeanor and personal compassion. I noticed that every time we complimented them on the level of care, they continually turned the compliment over to the patient. "Oh, the patient tells us what to do, we just see to their needs". It seems to be a general culture that insists that we don't heal patients, patients heal themselves, we just remove obstacles and help them out where they need it. I find their ability to put aside ego like that both reassuring and very impressive.
I'm way past my bedtime, so this has to be it for now, but it has been over a week without extended feedback and I wanted to get this out to all the family and friends that have been so kind and concerned for us. Every very little step by the girls is a big deal, and we are just starting to see the pattern and feel the pace of it. Know that we'll keep you posted ourselves or through our parents and other friends as significant things happen. Most of all, we're really looking forward to a time you can meet Hazel and Abigail for yourselves.
Matt & Nancy Scates
PS: Note from Nancy - we tried to include as many people as possible on this email, but realize there may have been a few that did not receive it. Using your best judgment, of course, please feel free to forward this to family/close friends who would be interested.
Nancy and I wanted to respond and update the many people that have extended their best to us over the past week. We are sincerely touched by your concern, your hope, your help, and your prayers. I hope to go into more detail and send updates more often, but please understand how difficult that is at the time. Nancy and I are first and foremost responsible for doing everything we possibly can for the benefit of our children, and it is a 24 hour a day job to keep us all healthy right now, although it will get easier. More on that later. Getting to the point, here is the overview of where everything is at.
What Happened:
Just over a week ago, on Sunday March 11, Nancy went into preterm labor. A "normal" full term pregnancy is about 40 weeks long. However, in a twin pregnancy, a full 40 week term can actually become stressful or even hazardous to both twins and the mother. The short version is that there is a limited amount the body can support, and sharing that much nutrition, blood and oxygen among three people gets difficult. It is not uncommon for twin pregnancies to come earlier than a 40 week term. This can be either by a scheduled delivery(as a precaution), or as a result of naturally occurring preterm labor. As a precaution for the children and the mother, we were scheduled to perform the former at 38 weeks. Instead, what happened was the latter, at 28 weeks.
Hazel Annette and Abigail Jeanne were born at 2:44 and 2:45 AM on Monday, March 12, 2012. They weighed 2'11" and 2'8" at birth, and measured 15 in and 10.75 in long. They were stabilized and taken to the Neonatal Intensive Care Unit (NICU), while Nancy completed post operative procedures from C-section delivery and went into recovery. (Note from Nancy: the girls' middle names are from their grandmothers ... Annette is Nancy's mom's and Nancy's grandmother's middle name; Jeanne is Matt's mom's middle name and Matt's grandmother's first name.)
Both of the girls are doing well, and Nancy is recovering steadily. We have been told by the doctors that we should expect for the twins to remain in the NICU until approximately their original due date (which was May 16). The girls were 12 weeks premature, so we could be visiting the NICU anywhere between 8 to 12 weeks depending on their health and progress. We hope to take them home sometime around the middle of May.
How Mom and Dad are Doing:
- Caesarean sections are common these days, nevertheless, they are major abdominal surgeries. So, while Nancy is doing very well, it will take some time recover enough to do all the things she's used to doing. She is restricted from driving for at least the rest of this week, and cannot lift anything more than 10 lbs until her core can heal up enough to handle more than mild strain (she was given this restriction for 6 weeks). I'm doing most of the menial duties to keep her as rested as possible, and both our parents have done a great deal to help us out these first two weeks so we have as little to worry about as possible.
- It is very difficult to leave your newborn children every day. While most people spend 3-4 days in the hospital very near to their newborn and then take them right home, Hazel and Abigail (or Abby) are relatively isolated in a controlled access NICU. They are kept inside an incubator/isolette, and separated from contact most of the day to minimize risk of infection, regulate temperature, and otherwise give them an environment as safe and similar to a womb as possible. Since Nancy was released from the hospital last Friday, we now drive around 20 miles one way, daily, from our house to the hospital. We can touch the girls, help take their temperature, and change diapers, but only during their regularly scheduled checkups that happen every three hours. At this stage, we can also hold them for about an hour or two per day outside the isolette so they can have the clinically noted benefits of skin to skin contact (called "kangaroo care"). We perform a full surgical scrub prior to entering the NICU whether we arrive at a time we can touch them or not. However, we are careful to give them only the stimulation they are currently capable of handling, as advised by the very capable NICU staff. Most of what the girls do is sleep, eat and breathe. For Nancy and I, we take an attitude of "the dude abides," and do our best to take care of each other while the girls grow strong enough to come home. I noted to Nancy that I spent just over 12 weeks in boot camp, and that was the conservative estimate for the time in NICU we'd all have to endure. It's not really that long, but it can feel pretty arduous. All of this has been so sudden that we've mostly been living very much in the now. We haven't been able to look into the future far enough to feel overwhelmed. Mainly we're just keeping up with ourselves from insurance form to insurance form, pump to pump, meal to meal, and day to day. The only time we've felt overwhelmed/panicky is when we're exhausted, so we've made a point to be in control of that. We've got a strict schedule to get the work done, get enough rest, and keep ourselves from getting sick.
- Our daily schedule is actually sort of rigorous, mainly due to feeding cycle that any parent is familiar with. The American Academy of Pediatrics recognizes several benefits from breastfeeding. For a premature baby, those benefits are considerably larger and more dramatic. The term we continually hear from the staff here about mother's milk for a preemie is "like gold." Therefore, Nancy is just as busy feeding the girls as any mother would be at home. Every 2-3 hours we pump, bottle, freeze and store the milk for transport to the hospital. All the gear is washed after each pump and sanitized every 24 hours. We barely have enough time between those periods to do some basic home maintenance, eat meals, feed cats, make notes in a journal, fill out insurance paperwork, and catch enough sleep to keep us from getting ill. Nancy can get several hours straight at night, as well as catch a few hourlong naps here and there while maintaining the feeding schedule.
All About the Girls:
- Hazel and Abigail/Abby were known as twin A and twin B for the first few days of their lives. Nancy and I were down to about 10-12 names at the time they were born, assuming we had several more weeks to decide things. In the hospital we were asked about it no less than 10 times per day, but as much as we wanted to discuss it in depth and make a decision, the first several days in the hospital were a total blur, and we were far too exhausted to discuss it much more than a few minutes a day (quite literally). As things settled into a more manageable routine and our fatigue lessened, we were able to narrow it down to our favorites. Near the latter half of Nancy's hospital stay, NICU staff informed us that the girls were stable enough that we would be able to hold the girls for a short time. So, we decided to hold each of the girls to see if the names we liked "felt" right. After that, we visited them once more to ask them if they were ok with the names we favored. They seemed quite amenable when we asked, so we informed the hospital staff the next morning to get the birth certificates in order.
- Premature birth is well studied, and there are many advanced statistics to describe it. Without getting into the heavy math on it, there are several practical takeaways. Twenty-four weeks is a big deal, and 28 weeks is a very big deal. For surviving children, many of the toughest issues with preemie birth correlate to 22-25 weeks. By reaching the 28th week of gestation, Hazel and Abigail had developed most of the important systems they need to a relatively mature point, and their odds of facing the some of the most dangerous challenges dropped off considerably. What is in front of them is still very challenging, but statistically there is very good reason for confidence.
- For what is still in front of them, however, the director of NICU gave us some good advice. The director is a keen eyed woman that exudes perception and a high level of attention. She indicated that the natural progression for the babies is to take a step forward, then two steps back. After they've done that a few times, they will take one step forward and one step back. Following that, I guess you get the picture. They will move backwards some, and once they move steadily forward, it is still a marathon and not a sprint. We should expect some setbacks, and the only main concern is whether they don't recover from a setback. That has proven to be very true and a comfort so far. In the 10 days the girls have been here, they have lost weight, which is normal and a good indicator that their livers are in good working order. They have also just started to regain the weight they lost, and are within 3 ounces of reaching their original birth weights. Both girls have suffered from mild jaundice, also a very common issue at this stage. They responded to therapy, eliminated the jaundice, and are currently continuing to hold it off. Both girls have been feeding steadily, and there has been a gradual increase in the amount they are fed every day. Hazel and Abby also graduated from a ventilator to room quality air on a CPAP (a type of breathing therapy) about a day or two into their hospital stay, and just today - Wednesday - (at 10 days old) were switched to a nasal cannula (the one with the prongs in the nose), so we can now see their faces (and, of course, they are very cute). Hazel also had her IV taken out last night (Tues), and Abby's will be taken out in the next day or two. Heart scans and brain scans, at this point, also continue to be clear. Overall, we've seen steps, backsteps, and a few times of jogging in place. Fortunately, they have encountered several of the common issues and done very well in advancing through them.
- Apart from raw statistics, the doctors and nurses are very pleased with how active the girls are, and how rigorously they respond to beat the common issues. We continue to hear them described by the staff as "very vigorous little girls," "feisty," "progress is stellar," and several other glowing descriptions. Hazel and Abigail are very determined, which may be the best indicator of all. While we expect to be confronted with normal problems, we've been thrilled to see how strongly and swiftly the twins tend to work through them. The time it took to start gaining weight was shorter than initially expected, they are moving very steadily up in feedings and tolerating it well. They handled the jaundice in short order. Their respiratory progress in particular has been pretty aggressive. In the sage words of L.L. Cool J, "I'm gonna knock you out, Momma said knock you out."
- Pictures, pictures, pictures. As they say on the internet, "pics or it didn't happen." We do have pictures of the girls, but Nancy and I have some concerns. We are a little protective of the girls right now, and would like to focus on providing them as much as we can for feeding, and as much "kangaroo care" as they can get handle. Any time spent taking, organizing, and sharing photos (while it should be easy) is consistently complicated by technical, format, network, and user error type issues. Labeling and commenting them takes time, and time in tech support is time away from Hazel and Abby. Please be patient while we get that together, and understand that we are in fact taking photos and notes we will begin to share. Also, while Hazel and Abby are beautiful, they are also vulnerable and look that way. Up to now, I can (though I wouldn't) hold their heads and torsos in a single hand. They have multiple tubes and wires coming out of places, including, as of yesterday, a head strap and nosepiece for the CPAP machine that obscured most of their faces. It is not the type of picture we want on Facebook or a company intranet. We're urging everyone to use good judgment about that, and understand that we will feel a lot more like sharing photos the stronger they are and the further that dangers are behind them. Last of all, we would like to be sensitive to anyone else that has experienced something like this, especially if they have lost a child. We do not want to put anything out in a forwarded set of photos that would cause distress to someone sensitive to this sort of thing. We are happy to share, and we are fine if you do, just keep it in perspective and use your heads. This is me with my Dad hat on ;-)
- Personalities: Hazel likes to kick, Abigail likes to squirm. I've heard three types of cries from Hazel, one of discomfort, one distress, and one feisty mad. Abigail has three I've heard as well: a very delicate little squeal of protest, as well as the distressed and a feisty mad ones too. When you change Abigail's diaper, she'll often cooperate with you by extending or tucking her legs when you need to maneuver the diaper around legs and wires and tubes. Hazel mostly sticks her legs straight out and holds still until you've got her fastened up again. Abby likes to sleep all tucked in and curled up. Hazel is a casual sleeper that likes to stick a leg out, or throw her arm up over her face with her elbow pointed out. Both the girls really like naptime on Mom when they can be held. Their heart rates are steadier, there respiration rates are steadier, and their oxygen saturation goes up and holds there longer. Both girls kind of like my singing and humming. It settles them a bit when they are a little agitated. Both girls like grabbing their facemasks when they are initially trying to get back to sleep. Hazel fusses with her tubes and wires, and pulls on them when she's not happy. Abby tries to ignore them, and will do so as long as she can get nice and still. Hazel likes to run up front. Abigail starts slow, gains momentum and finishes ahead. Both of them are active and responsive with us and all the attending NICU staff.
A note on the Hospital and NICU:
We've been very impressed with St. David's and their staff. I was particularly impressed with Dr. Christy Capet, who delivered the girls. We've both been very happy with how balanced the nursing staff is in their professional demeanor and personal compassion. I noticed that every time we complimented them on the level of care, they continually turned the compliment over to the patient. "Oh, the patient tells us what to do, we just see to their needs". It seems to be a general culture that insists that we don't heal patients, patients heal themselves, we just remove obstacles and help them out where they need it. I find their ability to put aside ego like that both reassuring and very impressive.
I'm way past my bedtime, so this has to be it for now, but it has been over a week without extended feedback and I wanted to get this out to all the family and friends that have been so kind and concerned for us. Every very little step by the girls is a big deal, and we are just starting to see the pattern and feel the pace of it. Know that we'll keep you posted ourselves or through our parents and other friends as significant things happen. Most of all, we're really looking forward to a time you can meet Hazel and Abigail for yourselves.
Matt & Nancy Scates
PS: Note from Nancy - we tried to include as many people as possible on this email, but realize there may have been a few that did not receive it. Using your best judgment, of course, please feel free to forward this to family/close friends who would be interested.
0 comments:
Post a Comment