Embracing Life

Lou's third hospitalization brought despair, crises of faith, and decisions to be made. The doctors were at a loss. She grew sick from a hospital virus. She had no more easy veins with which to get IVs. She stopped eating. She was too weak to have another major surgery. And, if there was to be another surgery it would be to remove her lung. What to do?

Just before she had gotten sick, we had taken down her crib in preparation for a "big bed." She had no bed in our home. She had been gone for so long at home that it almost felt natural. And with those feelings, I felt as though I was losing faith and that it would somehow impact her. Thank goodness for our minister who helped me through these feelings and for our friends who swooped down and set up a bed.

H began to seriously feel the impact of all this as well. For her, even with lots of attention and gifts, it was clear to her that she was on the sidelines. We added some therapy for her to our routine and we to this day talk and reassure her that she is loved and special too.

The end did come and it was good. After testing and questioning, we decided to allow the doctors to inject glucose into her chest tube which would create such scarring that her lung would be sealed to her pleural cavity for good. It was one of those forever decisions with no going back. We did it. It worked. And after a few days of recovery, we finally went home.





It was Easter.







N and I have cherished and relished life and our family just a bit more fiercely ever since. But it is Lou who shines. She is our dancer. Our optimist. The member of our family who most embraces life at every turn and we embrace it with her.

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Love, Kindess, and Grace

All in all it was 60 days of hospital life. We actually found a rhythm to our life. N spent nights at the hospital. I would take H to school and then relieve N so he could go to work. Friends delivered H to the hospital after kindergarten or at the end of the day. We'd have dinner together and then I'd take H home to bed.

We filled the windowsills of Lou's room with potted bulbs. We covered her crib in a rainbow silk. Slowly the room filled with knitting, magazines, and books. It was a time of great fear, but we made it our loving nest.


March brought storm after storm. Once I arrived home in the evening to find no power and a foot of snow. Our neighbors had been watching and met us at the door. They had shoveled and raked the roof. They brought flashlights and tucked us into bed leaving a thermos of coffee.

Every neighbor on our street provided us with a meal. Every parent in H's class brought us a meal. A friend who worked at the hospital stopped in EVERY morning with coffee and a smile. At one point Lou stopped eating. He then arrived EVERY morning with a thermos of organic oatmeal loaded with cream and maple syrup. She ate.

My internet friends coordinated mailings of who knows how many hundreds of little gifts for both girls. We probably ended up with around 45 stuffed animals!

The organization I directed gave me paid leave. The Board took up a collection for us. The museum community of Vermont sent emails and flowers. Our little girl had touched many of these folks as she had been bundled about to lots of museums while I worked.

N's sister drove 3 hours each way twice on several weekends to take H home with her. N's parents flew up. My mother sat through both long surgeries with us and braved several snowstorms to help. My father called every single day. When Lou was admitted for the third time, we flew up N's mother from Florida again. N and I just needed more mothering.


It's funny, but I had never had to really accept help before. I had never had to just say "thank you" and know that I could never reciprocate. We had never been on the receiving end of some much love, kindness, and grace. It sustained us through the long days and nights in our little room.

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Surgery and More Surgeries

Lou's surgery was a success. My parents and a friend sat with us all day as we waited for news. The cyst was removed and she was placed in intensive care. She had an epidural, chest tube, catheter, heart moniter, oxygen, O2 sensor, and IV. She was one petrified little girl, but calmly told us exactly where on her dolly it hurt.

As we sat in ICU with all the wires and alarms, balloon after balloon arrived--65 balloons in all from the internet group of women I belonged to. It was as if each balloon floated by with a prayer inside from women all over the world. The hospital florist was amazed.

After surgery she was hooked up to suction on the wall via a chest tube to keep her lung inflated. We were assured that we'd be home in just a few days with things as good as new...

...4 days later we finally left ICU only to be moved upstairs as we continued to wait for her lung to remain inflated. Every time she was removed from suction, her lung would collapse. Finally, after 2 weeks, her lung remained inflated and we went home.

We spent the next couple of days being quiet. As we snuggled, it became clear that she was breathing too quickly again. We dropped H off with friends and went to the emergency room where we found that her lung had collapsed and her heart had shifted again. She had emergency surgery with another chest tube inserted and we were back to our friends in the Ped ward. After another week of waiting to see if her lung would heal, it was decided that she had to have another major surgery.


Again, my Mother and our dear friends sat with us all day through a longer, and actually more dangerous surgery as they tried and tried to fix the air leaks. They sutured--air leak. They applied bioglue--air leak. They stapled. They closed--air leak. They re-opened AGAIN. Consulting surgeons arrived. They bioglued again. And finally closed. We were frantic as hours and hours passed with no word. We went through the same drill with suction and tubes before going home after 3 days.

Through it all, Lou kept a good spirit and her good two-year old spunk. Being attached to the wall for days on end required lots of entertainment!


It had all begun February 7th and we left the hospital March 26th. And then...on March 28th we were back in the ER having another emergency surgery to insert another chest tube.

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And then she was ill--updated

It was February when she became ill. She had a fever, and instinct said to not wait but to take her in. The whirl of activity--the doctor listening to her chest for too long...the nurse hooking her up to an O2 sat sensor...the doctor sending us off for xrays...the radiologist and pulmonologist checking her in the hallway...me protesting I was sure she hadn't swallowed something...a terrified call to N....driving back to our doctor...


...where we found out her heart was on the right side of her chest and something very large was where her left lung ought to have been. That terrible weekend of waiting to see if antibiotics would take down the fever and clear out infection...Monday, watching our doctor pick up the telephone calling for a surgical consult.


...and then finding ourselves in the nightmare of watching our child being rushed from the CT room to the OR, on a stretcher, while being bagged....and receiving the news that Lou had a congenital cystic adematoid malformation (a CCAM cyst) and that she would die without an operation...and could die while in the operation.

Updated to add--Lou is OK now. She pulled through it all (but it's a long story). I just want to make sure readers know that this is not happening now. I am telling her story for the first time which is turning out to be a very healing thing to do.

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The Early Years

After 9 days of mini contractions, I went to see my midwife on February 18th. It turned out she was to leave for vacation the next day and I was determined to have my baby before she left. That afternoon N and I took H to a friend's house then went home where I drank castor oil mixed with orange juice. Within 45 minutes, real labor had begun. We went straight to the hospital as H's birth had been fairly quick for a first baby.


Lou's birth was very fast--after 1 1/2 hours I was ready to deliver and 4 minutes later she was born. She was placed on my chest and we all stared at this sweet girl with bright red hair! It was a beautiful birth. Because it was happening so fast, my midwife curled up in a chair and waited with us. The lights were dim and it was peaceful.

At some point in the night, I woke to find her on oxygen in a crib by my side. And, in reading back through her medical records, I see she was on oxygen for hours. No worries, they said. She just needed to pink up.

There were hints throughout Lou's infancy that something might be wrong. Of course, they only became hints in hindsight.



She was on oxygen at birth. She didn't cry much at all. She nursed frequently, but seemed to tire easily. The sling seemed to be painful and she preferred to not be curled up in it. She slept with us, but didn't seem to manage well if a cover ended up over her head.



At about 10 months she gave up nursing. At 12 months her weight and height percentiles, never high to begin with, began to slip until she was only at the 2nd percentile (her sister was at the 99th). We had been worrying, but now our doctor began to worry too.

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Lou's Story

It's February 9th, the date for when Lou (which is E's nickname) was due to be born. Today, 9 years ago, my friend was actually giving birth in her home down the road, but Lou was having none of this being born stuff. This second pregnancy of mine had been a little harder than the first. One of my blood tests had come back a little "off" and my midwife encouraged an amnio to see if all was well. It was a stressful time waiting for the results which came, by telephone, at work. "All was well", my midwife said, "and by the way it's a GIRL!" What a relief. Little did we know that the "off" numbers really did mean something.

February is Lou's birth month. It is also the month in which she became critically ill. I think a lot about her in February. I've never written her story except in email updates to friends while in the midst of it (and which I now can't find). I thought I'd try to tell it over this next week before her birthday.

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