Here I am in Boston, a city with which we all felt some affinity after the marathon bombings, as its citizens bonded together under the declaration "Boston Strong" and we all felt buoyed by their optimism, fortitude, and generosity to one another. Boston Strong tee shirts are ubiquitous here among residents--I see several on my daily meanderings.
And in the situation and setting I am in, there are many references to and I think a lot about strength.
I mentioned to my sister yesterday that I feel this dichotomy inside. On the one hand, I am someone others consider strong enough to lead a high school. On the other hand, this experience with a sick baby and living far away from family has exposed my greatest vulnerability. I've been weepy, unsure, insecure, worried, anxious, and fearful, even when all signs point in positive directions. Am I these two personae--both capable and fragile?
My sister lives with a son who is in a consistently delicate medical state with his central line. She and her husband count on semi-monthly emergency room visits when my nephew is ill or there are problems with the line or tube sites. We are all in awe of her pragmatism and positivity. On our walk to the harbor yesterday, though, she described having some of the very same irrational thoughts (overwhelming fear of mortality and worries about her children swimming, riding in cars, getting hurt in general) I have found invade my mind and threaten to affect my general outlook.
I go through the mental exercise of counting my blessings and imagining and appreciating those who are experiencing different, more life-threatening hardships. I wonder what it means to be "strong." I wonder about that oft-heard saying that God gives you what you can handle--a suggestion that some of us are built for--and then somehow deserving--of tougher times? I don't subscribe to that philosophy. Instead, I search for the learning in the journey (and as my sister eloquently articulated it as she described a particularly difficult time in their family, "we looked for the message"). What do I know about myself now? What do I better understand about the people around me, about what others are experiencing and what others give and say and use to cope? What do I know about life that I didn't see or imagine before?
Tootsie is tough, I've felt, since her birth when she emerged squawking and alert, to her relatively quick recovery from her serious infection. But the babies here who succumb, are they less strong, less determined? Big Sis is still struggling to understand why our cat couldn't recover from her injuries to live, and in turn I struggle to explain why she would leave us. Why it might appear our kitty couldn't fight anymore. I want my daughter to see the strength in knowing that it's time. There's no rubric for strength applicable to all scenarios which doesn't suggest a kind of comparison, a hierarchy of fortitude.
At home our niece, my daughters' cousin, is caring for her mother, Husband's sister, as she suffers from brain cancer. Our niece has lost her father already, and in her tender twenties and as an only child, she prepares to say goodbye to her mother, too. This beloved and admirable niece is the same one who managed Husband's mother's hospice care two Christmases ago. She is a hero in our family. And not only for what she's endured--for who she is.
I think of her as having indomitable strength, but with that characterization comes the subtle pressure that suggests she shouldn't waver from her resolute and realistic care and decision-making on behalf of her mother. That she can't break down and feel helpless and wonder why why why. I'm thinking differently about strength, now. I'm thinking it's the staying of the course, the resigned travel down the path which includes breakdowns and meltdowns and steps backward and forward. The genuine acknowledgement that there are surges of hope and depths of despair. We are all strong for facing our challenges, then.
I want to share part of our niece's story with you, in her own words.
What do you know about strength, from yourself and others? When have you faced your most vulnerable self?
Monday, August 19, 2013
Sunday, August 18, 2013
Sugar and Spice
My sister from Oregon is here, and brought bows and flowers and outfits to dress up our little girl:
She was also present to see Tootsie top the scales at 5lbs. 1oz. last night!
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| There's no denying she's cute. |
My sister has experienced a range of medical issues and challenges with her three sons, including a NICU stay with her eldest, and motility issues with both her first and second sons (which I've written about here). Right now there's a kinship between our cousin on a feeding tube and our own baby with her NG tube, too. We've bonded as I listen to my sister recall her own NICU saga and provide updates on the status of my nephews' health. My sisters--one a nurse, the other with so much experience in the hospital--have been ideal companions through this journey.
We're trying to figure out how much breastmilk Tootsie is getting during a feeding, so at some point during the day we weigh her before and after a feed. It's an inexact measurement because she has lines dangling, but last night it looked like she took 26 milliliters. The nurse subtracted that much milk (the most we've ever measured) from her fortified tube feed. Well, about an hour later, she started squawking. She was still hungry. She is interacting more and more with regard to her feeding, which is a great sign. We'll expect her to be more in charge of when she feeds when she goes home. The current plan, to help support her growth and weight gain, is for us to feed her by (supplemented) bottle of breastmilk most times, and feed by breast alone three times a day or so. As she shows continual weight gain, we'll add more breastfeeding.
My sister and I wandered to Boston's North End for dinner last night, the Italian section of town. It was hopping on a Saturday night, with a feast celebration running down several blocks and lines for every restaurant. We were fortunate to secure a table quickly in a great trattoria and had a lovely dinner. We returned to find our night nurse is a North End resident.
My sister leaves today, and my Cambridge sister returns tomorrow. I'm hoping my next family visitor is my mother, who will come help us transition out of the NICU, onto an airplane, and home to our family. Wednesday is Day 21 of the antibiotics regimen, so we're hopeful we will know more then...
Saturday, August 17, 2013
TGIF: 35 Weeks and 4lbs. 14oz
Tootsie news yesterday by statistics: It's Friday, so she's 35 weeks. And she is on the ounce-a-day gain train, now only two ounces shy of a nice round five pounds! She passed her hearing test (which I anticipated, because she reacts so strongly when I sing to her. Ahem. No comments, please) and I got to wash her hair.
Her biggest obstacle to surmount before she is sprung from the NICU is taking all her feedings by mouth. She needs to be alert at each three-hour feeding first, and she still sleeps through several a day (which means they hook up her milk by tube).
I've found myself having to avoid reading too much news, as there is too much depressing coverage, with crashing planes, kidnappings, protesters dead, babies abandoned. As a friend wrote on Facebook, "I wish I could unread that Hannah Anderson article..."
We are also at a place in the NICU where Tootsie is stable and basically what they call a "Feeder/Grower." Yet we are surrounded by very sick babies, and I pass by their rooms with hope and reverence, mindful of where their parents are on their journeys with their newborns.
My family--determined to have someone here to support me at all times--provides uplift and distractions and opportunities for fresh air. And the internet comes through with some sources of inspiration.
Here's a video about a teacher, dad, and human being determined to enrich others' lives:
And here's a mother panda reunited with her baby (I can so relate to this one!)
Note, however: syrup or honey or whatever they used to distract Mom while they sneaked her baby away wouldn't work on me...but the promise of sleep, maybe, would...
Her biggest obstacle to surmount before she is sprung from the NICU is taking all her feedings by mouth. She needs to be alert at each three-hour feeding first, and she still sleeps through several a day (which means they hook up her milk by tube).
I've found myself having to avoid reading too much news, as there is too much depressing coverage, with crashing planes, kidnappings, protesters dead, babies abandoned. As a friend wrote on Facebook, "I wish I could unread that Hannah Anderson article..."
We are also at a place in the NICU where Tootsie is stable and basically what they call a "Feeder/Grower." Yet we are surrounded by very sick babies, and I pass by their rooms with hope and reverence, mindful of where their parents are on their journeys with their newborns.
My family--determined to have someone here to support me at all times--provides uplift and distractions and opportunities for fresh air. And the internet comes through with some sources of inspiration.
Here's a video about a teacher, dad, and human being determined to enrich others' lives:
And here's a mother panda reunited with her baby (I can so relate to this one!)
Note, however: syrup or honey or whatever they used to distract Mom while they sneaked her baby away wouldn't work on me...but the promise of sleep, maybe, would...
Friday, August 16, 2013
Before and After
The day before yesterday my sister-in-law and I took the T to Cambridge so I could show her Harvard and the area where my sister and her husband live. The only Curious George store in the world (apparently) is there, so we had to hit that up, too.
While I was there I felt impressed with how much the girls and I and aunt and uncle saw and did in that weekend before my water broke early Monday morning. We took the ferry to Spectacle Island to fly kites and eat blackberries, we had a sunset swim at Walden Pond, we made posters at the printing press, we grilled in the Adams House courtyard, we walked my sister's puppy, we jogged along the Charles, we visited a Bastille Day celebration, and we ate and shopped a little.
I had an unexpected emotional reaction to being back in Cambridge, though. I realized that I associated it with the Before, the time when I was pregnant, when my girls were here, when the only worry on my mind was the drive to Maine on Monday morning (would I get lost, etc.). That was when my world was going according to plan: I was having the vacation I'd promised my girls, and giving them the undivided attention they'd asked me for and I'd spent many months determined to offer.
I was looking at Cambridge now through a different lens, without the girls, with a still sore tummy and an eye on my watch for when it was time to return to my baby. My heart felt a little heavy, and Cambridge felt less lively and invigorating.
Meanwhile, I associate the areas around the hospital with my new reality. This is the Tootsie side of Boston.
I'm wondering now what it will be like to go home, to the house that wasn't expecting a baby yet, a house that's been empty a lot this summer, and which is missing the cat who was there when we left.
I imagine that our baby girl, our third daughter, our fifth family member, and tenth grandchild in the family, will fill up space with her little probing eyes, sweet cries, and baby smell.
I'm missing Husband and daughters today, but so relieved they'll be together tomorrow.
While I was there I felt impressed with how much the girls and I and aunt and uncle saw and did in that weekend before my water broke early Monday morning. We took the ferry to Spectacle Island to fly kites and eat blackberries, we had a sunset swim at Walden Pond, we made posters at the printing press, we grilled in the Adams House courtyard, we walked my sister's puppy, we jogged along the Charles, we visited a Bastille Day celebration, and we ate and shopped a little.
I had an unexpected emotional reaction to being back in Cambridge, though. I realized that I associated it with the Before, the time when I was pregnant, when my girls were here, when the only worry on my mind was the drive to Maine on Monday morning (would I get lost, etc.). That was when my world was going according to plan: I was having the vacation I'd promised my girls, and giving them the undivided attention they'd asked me for and I'd spent many months determined to offer.
I was looking at Cambridge now through a different lens, without the girls, with a still sore tummy and an eye on my watch for when it was time to return to my baby. My heart felt a little heavy, and Cambridge felt less lively and invigorating.
Meanwhile, I associate the areas around the hospital with my new reality. This is the Tootsie side of Boston.
I'm wondering now what it will be like to go home, to the house that wasn't expecting a baby yet, a house that's been empty a lot this summer, and which is missing the cat who was there when we left.
I imagine that our baby girl, our third daughter, our fifth family member, and tenth grandchild in the family, will fill up space with her little probing eyes, sweet cries, and baby smell.
I'm missing Husband and daughters today, but so relieved they'll be together tomorrow.
Thursday, August 15, 2013
Lack of Organizational Skills
Premature babies are often referred to as "disorganized" by nurses, doctors, occupational and physical therapists, lactation consultants, and their own parents when they're eight years old and up (I can just see the excuse from Tootsie now: "But Mom, I've been disorganized since birth! I was born this way!").
What the professionals are referring to is the babies' tendency to flail arms and legs around, crane neck from side to side, and generally exhibit entropy from their core. Unlike full-term babies, they don't have the motor skills and neuro pathways developed enough to keep things centered and calm. If you watch Tootsie, she's still trying to figure out her hands as they're related to her mouth (and her arms!).
It all makes sense if you consider that at almost 35 weeks gestation, our baby girl should still be in the womb for a month more, curled in a ball, organized. Almost everything they do here in the NICU is meant to replicate that experience (lots of sleep, quiet, swaddling) so that her brain and body can continue to develop, as was her only job inside of me. Now, though, she is charged with learning to eat from the breast and bottle, too, and fatten herself up so she can regulate her own temperature outside the consistently warm environment in utero. It's quite a transition, and she has a lot of work to do that would normally be accomplished by amniotic fluid and the umbilical cord.
Since she can't only focus on the skills that will bring her home--feeding and fattening--and since brain development is so crucial too, her Care Team restricts the number of time she breastfeeds (and bottle feeds) for now, ensuring that she not only gets enough extra calories through her tube feeds, but that she also has plenty of opportunities to sleep. The process of getting her home is slow and steady, and the discharge date on her board still reads "TBD" as I suspect it will for some time.
Yesterday's leap was, after recording weight gain to 4lbs. 12 oz., lifting the pop top of her isolette and having her sleep in room-temperature air. Last night's nurse bundled her up and watched her temp closely, and so far so good. She may even graduate to a big-girl crib soon!
In the meantime, we're keeping her organized: Legs tucked, arms and elbows oriented to her midline.
It will be interesting to see what her backpack looks like in middle school...
What the professionals are referring to is the babies' tendency to flail arms and legs around, crane neck from side to side, and generally exhibit entropy from their core. Unlike full-term babies, they don't have the motor skills and neuro pathways developed enough to keep things centered and calm. If you watch Tootsie, she's still trying to figure out her hands as they're related to her mouth (and her arms!).
It all makes sense if you consider that at almost 35 weeks gestation, our baby girl should still be in the womb for a month more, curled in a ball, organized. Almost everything they do here in the NICU is meant to replicate that experience (lots of sleep, quiet, swaddling) so that her brain and body can continue to develop, as was her only job inside of me. Now, though, she is charged with learning to eat from the breast and bottle, too, and fatten herself up so she can regulate her own temperature outside the consistently warm environment in utero. It's quite a transition, and she has a lot of work to do that would normally be accomplished by amniotic fluid and the umbilical cord.
Since she can't only focus on the skills that will bring her home--feeding and fattening--and since brain development is so crucial too, her Care Team restricts the number of time she breastfeeds (and bottle feeds) for now, ensuring that she not only gets enough extra calories through her tube feeds, but that she also has plenty of opportunities to sleep. The process of getting her home is slow and steady, and the discharge date on her board still reads "TBD" as I suspect it will for some time.
Yesterday's leap was, after recording weight gain to 4lbs. 12 oz., lifting the pop top of her isolette and having her sleep in room-temperature air. Last night's nurse bundled her up and watched her temp closely, and so far so good. She may even graduate to a big-girl crib soon!
In the meantime, we're keeping her organized: Legs tucked, arms and elbows oriented to her midline.
It will be interesting to see what her backpack looks like in middle school...
 |
| Organized baby: swaddled, tucked in, binky deployed, and doll from the USVI providing support |
Wednesday, August 14, 2013
2 Weeks
Our baby girl is two weeks old yesterday. It's amazing how time has both passed quickly and crept along. While she is two weeks old, she has not yet reached full-term status, or her due date, which is interesting to remember at times, especially as she grows bigger and reassuringly sturdier. She is also officially two-thirds through her 21-day course of antibiotics today, after which she is free to show us when she's ready to come home.
Our big girls are back in San Diego, reunited with grandparents, our dog, aunties and uncles, and new baby cousin. They're doing well back in the complex of nests that constitutes home. Meanwhile, Husband is in his element coaching an Olympic development clinic (so gratifying to hear the excitement in his voice) in Texas; he will join the girls on Saturday and some semblance of normalcy should return for them.
My sister-in-law who delivered the girls back to Boston has remained to keep me company, thankfully. She is enjoying her first solo trip/vacation and had some time to explore Boston on her own yesterday. It has been great to have time to catch up and talk. When she leaves on Friday my sister arrives. I am just so very grateful for all the family members and friends who've rallied to support us.
Tootsie was sleepy yesterday after four feedings off her tube in a row, and breastfeeding wasn't as successful as it had been previously either. None of this was completely unexpected, as there are often several steps forward and then a few in place. She is up to 4lbs. 11oz., though, inching ever closer to the important 5lb. mark. She and I were able to spend quite a bit of time napping yesterday with her snuggled on my chest.
In the afternoon I had a surprise visitor from home, the mother of several students from school and a dear friend who happened to be here on business. She reassured me that all was well back home and at school (which has been very evident), and we had a sweet chat while Tootsie slumbered.
Sister-in-law and I capped yesterday evening with dinner and beer at the Cheers bar near the Boston Public gardens. It was a perfect upbeat setting. I was able to catch up on some sleep last night and this morning, and am looking forward to doing some laundry today (I've been rotating the same three or four tops and bottoms and sweaters--the nurses might not recognize me if I change my clothes!).
Have a wonderful day, world.
Our big girls are back in San Diego, reunited with grandparents, our dog, aunties and uncles, and new baby cousin. They're doing well back in the complex of nests that constitutes home. Meanwhile, Husband is in his element coaching an Olympic development clinic (so gratifying to hear the excitement in his voice) in Texas; he will join the girls on Saturday and some semblance of normalcy should return for them.
My sister-in-law who delivered the girls back to Boston has remained to keep me company, thankfully. She is enjoying her first solo trip/vacation and had some time to explore Boston on her own yesterday. It has been great to have time to catch up and talk. When she leaves on Friday my sister arrives. I am just so very grateful for all the family members and friends who've rallied to support us.
Tootsie was sleepy yesterday after four feedings off her tube in a row, and breastfeeding wasn't as successful as it had been previously either. None of this was completely unexpected, as there are often several steps forward and then a few in place. She is up to 4lbs. 11oz., though, inching ever closer to the important 5lb. mark. She and I were able to spend quite a bit of time napping yesterday with her snuggled on my chest.
In the afternoon I had a surprise visitor from home, the mother of several students from school and a dear friend who happened to be here on business. She reassured me that all was well back home and at school (which has been very evident), and we had a sweet chat while Tootsie slumbered.
Sister-in-law and I capped yesterday evening with dinner and beer at the Cheers bar near the Boston Public gardens. It was a perfect upbeat setting. I was able to catch up on some sleep last night and this morning, and am looking forward to doing some laundry today (I've been rotating the same three or four tops and bottoms and sweaters--the nurses might not recognize me if I change my clothes!).
Have a wonderful day, world.
Tuesday, August 13, 2013
Genie in a Bottle
Yesterday we had some highs and lows.
Lows:
1. Waking up weepy about saying goodbye to my girls at the end of the day.
2. Planning to embark on the renowned/infamous Boston Duck Tour, and then walking my family the wrong way down the Esplanade--a long walk.
3. Discovering that Tootsie's PICC line was not working or occluded. Installing a new peripheral IV in Tootsie's tiny veins. Hoping PICC line gets fixed.
4. Feeling exhausted today.
5. Tootsie sleeping through her sisters' two afternoon visits, and the Big Sis bottle-feeding plan having to be ditched.
6. Saying goodbye to my girls.
Highs:
1. Being reassured by helpful and understanding nurses throughout the day.
2. Finding an awesome playground on the Esplanade where the girls played for an hour, and then treating them to their first frappuccinos.
3. Finding that the PICC line began working again on its own. Potential disaster averted.
4. Spending some time in the hotel room in the afternoon resting and snuggling the girls.
5. Tootsie being ready for her first bottle at the 6:00 feed, and all of us getting to watch her nurse feed her, as she gulped it down!
6. Having a fun Italian dinner with both aunties and uncle, and with their help, saying goodbye in the most positive of ways.
I really enjoyed the characters of my daughters today--all of them. Little Sis is wonderfully unpredictable, joyful, and funny. She bursts out with hilarious and random remarks, and is loving and enthusiastic about all things baby. One of the highlights of her day was being given a little kit of Tootsie's stuff from the NICU: tiny diapers, thermometer, a little blood pressure cuff, a pacifier, a bottle, and the mask she wore under the bili lights.
Big Sis tells stories, chatting up me and her auntie, explains her feelings, and remains optimistic and resolute. When she held Tootsie on her chest last night, she told me it was the best feeling in the world, and she couldn't wait to have her own babies.
Tootsie had two feeds last night that were combination breast and bottle, which means two feeds without using her NG tube. It was so gratifying to have our little determined baby demonstrate she could do it in front of the girls so I could tell them that she is working hard to come home. Today was a huge leap forward in her progress and my feelings of confidence about her and what the future looks like. I left the hospital last night to catch up on more sleep at the hotel feeling much lighter and hopeful. A great way to end an emotional day.
With the girls on a plane en route to home, our family will soon be in only two places, with two teams working hard to support each other on the opposite coast. I'm feeling like it won't be too long before we are all together again.
Lows:
1. Waking up weepy about saying goodbye to my girls at the end of the day.
2. Planning to embark on the renowned/infamous Boston Duck Tour, and then walking my family the wrong way down the Esplanade--a long walk.
3. Discovering that Tootsie's PICC line was not working or occluded. Installing a new peripheral IV in Tootsie's tiny veins. Hoping PICC line gets fixed.
4. Feeling exhausted today.
5. Tootsie sleeping through her sisters' two afternoon visits, and the Big Sis bottle-feeding plan having to be ditched.
6. Saying goodbye to my girls.
Highs:
1. Being reassured by helpful and understanding nurses throughout the day.
2. Finding an awesome playground on the Esplanade where the girls played for an hour, and then treating them to their first frappuccinos.
3. Finding that the PICC line began working again on its own. Potential disaster averted.
4. Spending some time in the hotel room in the afternoon resting and snuggling the girls.
5. Tootsie being ready for her first bottle at the 6:00 feed, and all of us getting to watch her nurse feed her, as she gulped it down!
6. Having a fun Italian dinner with both aunties and uncle, and with their help, saying goodbye in the most positive of ways.
I really enjoyed the characters of my daughters today--all of them. Little Sis is wonderfully unpredictable, joyful, and funny. She bursts out with hilarious and random remarks, and is loving and enthusiastic about all things baby. One of the highlights of her day was being given a little kit of Tootsie's stuff from the NICU: tiny diapers, thermometer, a little blood pressure cuff, a pacifier, a bottle, and the mask she wore under the bili lights.
Big Sis tells stories, chatting up me and her auntie, explains her feelings, and remains optimistic and resolute. When she held Tootsie on her chest last night, she told me it was the best feeling in the world, and she couldn't wait to have her own babies.
Tootsie had two feeds last night that were combination breast and bottle, which means two feeds without using her NG tube. It was so gratifying to have our little determined baby demonstrate she could do it in front of the girls so I could tell them that she is working hard to come home. Today was a huge leap forward in her progress and my feelings of confidence about her and what the future looks like. I left the hospital last night to catch up on more sleep at the hotel feeling much lighter and hopeful. A great way to end an emotional day.
With the girls on a plane en route to home, our family will soon be in only two places, with two teams working hard to support each other on the opposite coast. I'm feeling like it won't be too long before we are all together again.
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