Coming Home (Our Story--Part V)

Leaving the hospital with Bridget was the most exciting celebration I could have imagined. We had all ached so much over not having her home with us just after she was born, and the back-and-forth trips to Children’s were grueling—and meant that our family was separated.

The anticipation built as the doctors began hinting that Bridget was close to meeting the requirements for discharge.

Activity at home was brisk and purposeful on that big, beautiful August day. The “WELCOME BRIDGET” banner was hung from our porch, and little paper butterflies were tied into the bushes at the front of the house (for our little butterfly, who emerged and captivated us all).

The kids happily put on their pink t-shirts—the ones they were supposed to wear to meet their baby sister when she was born. Having to wait to bring her home made the moment even sweeter. We’d already had a chance to preview our newest family member for a month before bringing her home, so we knew the prize we were winning.

I'll never forget that day...the sunlight was bright and soft at the same time, and the air was crisp. I remember feeling that the world had shifted into just that place for us. I was breathing yes.

Chris and I spent the day in required back-to-back presentations on basic parenting skills, and learning our specific home-going instructions. In between, we were visualizing all of the opportunities our future held—a stark contrast to the day Bridget was born, when all we could do was trust that things would be okay. We were hopeful all along, but the day we came home with Bridget we were certain there was reason to expect that we would all be more than fine.

Piece by piece, the entrapments of the hospital were removed. Bridget’s I.V. came out, her monitors were unhooked, and we were allowed to dress her in her own clothes. It was the first time I could actually carry her away from her bed. I almost felt like I was doing something wrong as I walked into the hallway with Bridget in my arms. We were free.

When it was time to leave, we said our good-byes while walking around her hospital floor as a group—like we were in a parade. It was our own little victory lap. We were waving, and the nurses were standing in the doorways and lining the hall. They were clapping and smiling, and waving back. We stopped every few feet for hugs, and for brief exchanges with the many medical professionals we had met during our stay. We’d had four other babies, and had never left for home with that much attention, or with more people genuinely wishing us well. It was a sign of the love and support for Bridget and for us—and of the great things to come.

We settled in quickly once we got home, and before long it seemed like years had passed since thinking about the future made our stomachs hurt, and since being without Bridget made our hearts so heavy. She was right there with us, in the little bassinet behind the living room couch that had been empty too long.

Making it over that hurdle, we all felt a huge sense of accomplishment, relief and joy. We had all made it through, with Bridget leading the way. I had a feeling we’d be following her often from then on…

Coming Home (Our Story--Part V)

Leaving the hospital with Bridget was the most exciting celebration I could have imagined. We had all ached so much over not having her home with us just after she was born, and the back-and-forth trips to Children’s were grueling—and meant that our family was separated.

The anticipation built as the doctors began hinting that Bridget was close to meeting the requirements for discharge.

Activity at home was brisk and purposeful on that big, beautiful August day. The “WELCOME BRIDGET” banner was hung from our porch, and little paper butterflies were tied into the bushes at the front of the house (for our little butterfly, who emerged and captivated us all).

The kids happily put on their pink t-shirts—the ones they were supposed to wear to meet their baby sister when she was born. Having to wait to bring her home made the moment even sweeter. We’d already had a chance to preview our newest family member for a month before bringing her home, so we knew the prize we were winning.

I'll never forget that day...the sunlight was bright and soft at the same time, and the air was crisp. I remember feeling that the world had shifted into just that place for us. I was breathing yes.

Chris and I spent the day in required back-to-back presentations on basic parenting skills, and learning our specific home-going instructions. In between, we were visualizing all of the opportunities our future held—a stark contrast to the day Bridget was born, when all we could do was trust that things would be okay. We were hopeful all along, but the day we came home with Bridget we were certain there was reason to expect that we would all be more than fine.

Piece by piece, the entrapments of the hospital were removed. Bridget’s I.V. came out, her monitors were unhooked, and we were allowed to dress her in her own clothes. It was the first time I could actually carry her away from her bed. I almost felt like I was doing something wrong as I walked into the hallway with Bridget in my arms. We were free.

When it was time to leave, we said our good-byes while walking around her hospital floor as a group—like we were in a parade. It was our own little victory lap. We were waving, and the nurses were standing in the doorways and lining the hall. They were clapping and smiling, and waving back. We stopped every few feet for hugs, and for brief exchanges with the many medical professionals we had met during our stay. We’d had four other babies, and had never left for home with that much attention, or with more people genuinely wishing us well. It was a sign of the love and support for Bridget and for us—and of the great things to come.

We settled in quickly once we got home, and before long it seemed like years had passed since thinking about the future made our stomachs hurt, and since being without Bridget made our hearts so heavy. She was right there with us, in the little bassinet behind the living room couch that had been empty too long.

Making it over that hurdle, we all felt a huge sense of accomplishment, relief and joy. We had all made it through, with Bridget leading the way. I had a feeling we’d be following her often from then on…

Hospital Stay/Learning to Eat (Our Story--Part IV)

“I will never forget Bridget’s courage and strength when given a chance.”
-Occupational Therapist who worked with Bridget at Children’s

We spent nearly a month at Children’s Hospital with Bridget, and those first few weeks were both exhilarating and exhausting.

I learned from the very beginning that Bridget has the heart of a champion. From the first moment I spent with her, everything she did said to me, “I am capable and I deserve a chance. Please don’t give up on me.”

She recovered from her surgery quickly, and was ready to begin tube feedings within a few days later.

(Anyone who hasn’t been in a NICU should know that everything there is “by the book”—amounts are carefully measured, procedures closely followed, hands diligently washed, etc. It’s very black and white –no gray.)

As is typical in a NICU setting, Chris and I had no input on “the plan” for Bridget’s recovery. But, as soon as I was able to spend time with her, my mothering instincts took over, and all I wanted to do was take care of her and protect her.

I noticed that she would turn her head toward me when she heard my voice, and that she would start rooting every two hours just like all of our other kids did as babies, only I wasn’t allowed to feed her (or even hold her at first).

The plan for her recovery was measured and prescribed according to stringent standards, for her safety and best interest--and while I understood that, I also knew that she had certain needs that only I could meet. I couldn't wait for the time to come when she had recovered enough so I could step in and take over for the doctors, nurses and machines.

Bridget began getting my milk through a tube in her nose about 5 days after her surgery. She tolerated that well, so she was given a bottle 2 days later.

She made a few strange, high-pitched noises the first couple of times she ate by mouth, and while she started off vigorously, she tired after about 10 minutes. A video swallow study was ordered, which showed that she was aspirating slightly while she was eating. That’s why she would “shut down” after a certain period of time. She was trying to keep herself safe. We were asked to thicken her feeds with a clear, non-nutritive gel.

I had to express my milk, thicken it, and then feed it to her in a bottle. Essentially, the milk was so thick that it was like “sucking pudding through a straw,” as one therapist put it. She could not finish a whole bottle (one and a half ounces) in 30 minutes or less. Still, she had a strong desire to eat. We asked for more time for her to try to learn to feed by mouth, since she was showing so many positive signs.

“These kids,” one surgeon explained, “tend not to do well with feeding by mouth.” He felt strongly that she would either go home on a feeding tube, or would be back to get one at some point. After only a few bottles, he asked our permission to “pop a G-tube in her, and get her home”.

To leave the hospital without a tube, he said, she needed not only to take full feedings by mouth, but also to prove she could gain weight doing it. He was concerned that she would expend too much energy eating, and would not be able to gain weight even if she could take the full amount at all feedings by mouth (which he also felt was highly unlikely). I don’t know that he ever really considered her, though. “This kid” clearly has the desire to eat, I thought, and I have no reason to assume that she doesn’t have the ability. At the very least, she deserves the chance to learn to eat.

So I learned early on that I would need to fight for Bridget—just as I’d do for any of my other children—only that there would likely be more circumstances when she’d need my advocacy.

At the time of this conversation with the surgeon, Bridget was just barely 36 weeks (gestational age) and had only been given bottles to try a few times. In addition to having Down syndrome, she was a preemie recovering from surgery, but she sucked like crazy on her pacifier and was rooting everywhere when she was near me or heard my voice. She was waking, hungry, every two and a half hours. If I was nursing her, I would have been feeding her on-demand. This kid wanted to eat.

We bought enough time in the monitored hospital environment that we were able to have the swallow study repeated. The second test showed that her swallow had continued to develop, and that she was able to safely handle liquid that was only slightly thickened. That, combined with the fact that she reached 37 weeks (gestational age), must have made a huge difference. She was waking for every feed and quickly began taking the full bottle every time it was offered to her. Still, she was limited in not only when she could take food by mouth, but in how much she could take. Working up to all feeds by mouth was a deliberate, gradual process. I spent nearly two weeks around the clock at the hospital with Bridget working on feeding.

There were times that our doctors insisted we feed Bridget through a tube in her nose, rather than by mouth, to conserve her energy. It made sense to some degree, but I watched her rooting while the nurse poured my milk into her feeding tube. There were also many times toward the end of our stay, that Bridget finished a bottle and was clearly still hungy, but was not allowed to have more (because it wasn't in her orders--"the plan" said no more than 45 ml no sooner than every 3 hours). Her instincts were strong and in tact, and it was very difficult for me to stand by and watch, when I should have been nursing her on demand, and at home.

When Bridget was allowed to try taking feeds by bottle, I knew that she had to finish the complete amount she was given to keep making steady progress toward coming home without some kind of feeding tube—and I really thought she was capable of doing it. But, since her milk was thickened, she had to suck harder, and sometimes the thickener would clog the nipple. She would be working away...and getting nothing. I was given 30 minutes for each feed (including burping and having to tickle her or prod her awake at times), so she didn’t get too worn out, or expend too much energy. Time was precious. If someone came by to talk to us (which always seemed to happen during a feeding), or if I had to use the restroom, I would nearly panic. It just seemed like there were so many things working against us in order to get her home on full feeds by mouth.

Sometimes when I would feed her, I would just sob. I knew she was giving it everything she had. I could tell that she was working so hard to remember suck-swallow-breathe, suck-swallow-breathe. It must have been demanding on her little body to have to put forth so much energy to get the thickened milk out of the bottle. But, her effort was strong and her determination was clear. She was doing her part…

Sometimes (and usually multiple times within a feeding) she would fall asleep eating and would seem like she was completely done trying. I’d give her a few minutes and then try her again. With her eyes still closed, she would begin sucking like crazy. When she would slow to the point that I thought she would give up, I would rub her arm or cheeks and whisper to her, “You can do it. Just one more try.” With her eyes still closed and arms at her sides, she would vigorously begin again. It was endearing and hilarious at the same time. Just when you thought her effort was fading, she would pop back up and give it another try. She just blew me away.

One night we had a nurse with an accent so thick that I could hardly understand anything she said. This nurse was very attentive, and came in to wake me when it was time for Bridget’s feedings. She brought in each tiny bottle and stood quietly for a few minutes to watch. Bridget would start out great guns, and then gradually slow down and nearly stop. I had to coax her to keep at it, but I knew that every bottle we did not finish meant that we were either going to have to stay longer, or we were getting closer to that G-tube. Honestly, I would have done whatever was best for Bridget, but deep down I knew she was nearly ready to come home without a feeding tube. The nurse would leave and return about 20 minutes later. Each time, the bottle was nearly full when she left, and gone when she returned. Her smile got bigger and bigger with each feeding. She was clearly moved by our success.

In the morning as her shift ended, she came into the room, leaned down beside me, touched my arm and said clearly and with great sincerity, “I think she felt in her heart…your wish for her.”

I know she did...

Bridget was able to leave the hospital just days later without medications, monitors, or tubes of any kind.

Hospital Stay/Learning to Eat (Our Story--Part IV)

“I will never forget Bridget’s courage and strength when given a chance.”
-Occupational Therapist who worked with Bridget at Children’s

We spent nearly a month at Children’s Hospital with Bridget, and those first few weeks were both exhilarating and exhausting.

I learned from the very beginning that Bridget has the heart of a champion. From the first moment I spent with her, everything she did said to me, “I am capable and I deserve a chance. Please don’t give up on me.”

She recovered from her surgery quickly, and was ready to begin tube feedings within a few days later.

(Anyone who hasn’t been in a NICU should know that everything there is “by the book”—amounts are carefully measured, procedures closely followed, hands diligently washed, etc. It’s very black and white –no gray.)

As is typical in a NICU setting, Chris and I had no input on “the plan” for Bridget’s recovery. But, as soon as I was able to spend time with her, my mothering instincts took over, and all I wanted to do was take care of her and protect her.

I noticed that she would turn her head toward me when she heard my voice, and that she would start rooting every two hours just like all of our other kids did as babies, only I wasn’t allowed to feed her (or even hold her at first).

The plan for her recovery was measured and prescribed according to stringent standards, for her safety and best interest--and while I understood that, I also knew that she had certain needs that only I could meet. I couldn't wait for the time to come when she had recovered enough so I could step in and take over for the doctors, nurses and machines.

Bridget began getting my milk through a tube in her nose about 5 days after her surgery. She tolerated that well, so she was given a bottle 2 days later.

She made a few strange, high-pitched noises the first couple of times she ate by mouth, and while she started off vigorously, she tired after about 10 minutes. A video swallow study was ordered, which showed that she was aspirating slightly while she was eating. That’s why she would “shut down” after a certain period of time. She was trying to keep herself safe. We were asked to thicken her feeds with a clear, non-nutritive gel.

I had to express my milk, thicken it, and then feed it to her in a bottle. Essentially, the milk was so thick that it was like “sucking pudding through a straw,” as one therapist put it. She could not finish a whole bottle (one and a half ounces) in 30 minutes or less. Still, she had a strong desire to eat. We asked for more time for her to try to learn to feed by mouth, since she was showing so many positive signs.

“These kids,” one surgeon explained, “tend not to do well with feeding by mouth.” He felt strongly that she would either go home on a feeding tube, or would be back to get one at some point. After only a few bottles, he asked our permission to “pop a G-tube in her, and get her home”.

To leave the hospital without a tube, he said, she needed not only to take full feedings by mouth, but also to prove she could gain weight doing it. He was concerned that she would expend too much energy eating, and would not be able to gain weight even if she could take the full amount at all feedings by mouth (which he also felt was highly unlikely). I don’t know that he ever really considered her, though. “This kid” clearly has the desire to eat, I thought, and I have no reason to assume that she doesn’t have the ability. At the very least, she deserves the chance to learn to eat.

So I learned early on that I would need to fight for Bridget—just as I’d do for any of my other children—only that there would likely be more circumstances when she’d need my advocacy.

At the time of this conversation with the surgeon, Bridget was just barely 36 weeks (gestational age) and had only been given bottles to try a few times. In addition to having Down syndrome, she was a preemie recovering from surgery, but she sucked like crazy on her pacifier and was rooting everywhere when she was near me or heard my voice. She was waking, hungry, every two and a half hours. If I was nursing her, I would have been feeding her on-demand. This kid wanted to eat.

We bought enough time in the monitored hospital environment that we were able to have the swallow study repeated. The second test showed that her swallow had continued to develop, and that she was able to safely handle liquid that was only slightly thickened. That, combined with the fact that she reached 37 weeks (gestational age), must have made a huge difference. She was waking for every feed and quickly began taking the full bottle every time it was offered to her. Still, she was limited in not only when she could take food by mouth, but in how much she could take. Working up to all feeds by mouth was a deliberate, gradual process. I spent nearly two weeks around the clock at the hospital with Bridget working on feeding.

There were times that our doctors insisted we feed Bridget through a tube in her nose, rather than by mouth, to conserve her energy. It made sense to some degree, but I watched her rooting while the nurse poured my milk into her feeding tube. There were also many times toward the end of our stay, that Bridget finished a bottle and was clearly still hungy, but was not allowed to have more (because it wasn't in her orders--"the plan" said no more than 45 ml no sooner than every 3 hours). Her instincts were strong and in tact, and it was very difficult for me to stand by and watch, when I should have been nursing her on demand, and at home.

When Bridget was allowed to try taking feeds by bottle, I knew that she had to finish the complete amount she was given to keep making steady progress toward coming home without some kind of feeding tube—and I really thought she was capable of doing it. But, since her milk was thickened, she had to suck harder, and sometimes the thickener would clog the nipple. She would be working away...and getting nothing. I was given 30 minutes for each feed (including burping and having to tickle her or prod her awake at times), so she didn’t get too worn out, or expend too much energy. Time was precious. If someone came by to talk to us (which always seemed to happen during a feeding), or if I had to use the restroom, I would nearly panic. It just seemed like there were so many things working against us in order to get her home on full feeds by mouth.

Sometimes when I would feed her, I would just sob. I knew she was giving it everything she had. I could tell that she was working so hard to remember suck-swallow-breathe, suck-swallow-breathe. It must have been demanding on her little body to have to put forth so much energy to get the thickened milk out of the bottle. But, her effort was strong and her determination was clear. She was doing her part…

Sometimes (and usually multiple times within a feeding) she would fall asleep eating and would seem like she was completely done trying. I’d give her a few minutes and then try her again. With her eyes still closed, she would begin sucking like crazy. When she would slow to the point that I thought she would give up, I would rub her arm or cheeks and whisper to her, “You can do it. Just one more try.” With her eyes still closed and arms at her sides, she would vigorously begin again. It was endearing and hilarious at the same time. Just when you thought her effort was fading, she would pop back up and give it another try. She just blew me away.

One night we had a nurse with an accent so thick that I could hardly understand anything she said. This nurse was very attentive, and came in to wake me when it was time for Bridget’s feedings. She brought in each tiny bottle and stood quietly for a few minutes to watch. Bridget would start out great guns, and then gradually slow down and nearly stop. I had to coax her to keep at it, but I knew that every bottle we did not finish meant that we were either going to have to stay longer, or we were getting closer to that G-tube. Honestly, I would have done whatever was best for Bridget, but deep down I knew she was nearly ready to come home without a feeding tube. The nurse would leave and return about 20 minutes later. Each time, the bottle was nearly full when she left, and gone when she returned. Her smile got bigger and bigger with each feeding. She was clearly moved by our success.

In the morning as her shift ended, she came into the room, leaned down beside me, touched my arm and said clearly and with great sincerity, “I think she felt in her heart…your wish for her.”

I know she did...

Bridget was able to leave the hospital just days later without medications, monitors, or tubes of any kind.