Tuesday, June 30, 2009
by Steven Leavitt and Stephen Dubner
Read this while sitting around at Primary Children's Medical Center. Much to my pleasure and Abe's chagrin, Freakonomics doesn't have much at all to do with economics as one might traditionally think of them. It's less about finances and more about interpreting data. I realize this sounds very boring, but Leavitt is engaging, describing data that illustrates everything from socioeconomic influences on baby naming to the structure of a crack gang. More, this book reminded me a little of the radio show This American Life: a whimsical collection of semi-related ideas, stories, and statistics woven together into an engaging, accessibly written collection.
Change of Heart
by Jodi Picoult
Jodi Picoult is a writer gifted on multiple levels: she uses language artfully but not ostentatiously, does thorough research, creates believable characters, and masterfully creates a structure for her stories that inevitably draws me in and keeps me interested until the very last page. (An exception to this would be Songs of the Humpback Whale, one of her earlier novels, which did not appeal to me at all). In Change of Heart, she explores a variety of themes--religion, miracles, love, forgiveness, atonement--from a variety of angles, giving me an opportunity to step back and re-think my own perspective. It also addresses the isuse of capital punishment, something I haven't thought much about recently.
Scratch Beginnings: Me, $25, and the Search for the American Dream
by Adam Shepard
My mother-in-law recommended this. It's an easy read, but a worthwhile one. The writing isn't anything to write home about, but the author doesn't pretend to be a writer; instead, he emphasizes that he's a regular guy with something to say. And he definitely does have something interesting to say. Shepard said he was tired of listening to young people complain about what they didn't have instead of taking advantage of what they did have. He wanted to see if, as some sociologists have proposed, the American Dream was now defunct. So after college he took a train to a randomly selected city with only $25 and a duffel bag. For the purposes of this project, he erased his college degree, past work experience, and all references from his record. His goal was to, within one year, be holding down a decent job, living in a self-furnished apartment, driving some sort of road-worthy vehicle, and sitting on $5000 in savings. He actually achieved all this in six months. Not bad. I found Scratch Beginnings inspirational-- it left me with a desire to work harder toward setting and achieving goals--though I was sometimes irritated by Shepard's overt moralizing.
by Gary Braver
If someone told you there was an experimental surgery that would make your dumb kid really smart, would you have the procedure done? Decent writing with some character inconsistencies.
Saturday, June 27, 2009
Documentary Night helps keep us sane. Here we are enjoying some DELICIOUS burgers cooked by Nicky. What you don't see is the fear in our eyes: Soren's in his swing for now, but he won't stay there forever. And when he gets out, we know our peaceful picnic moments are numbered. That child is out of control.
Speaking of documentary night friends, another piece of news is our lives is that Uncle Sue is living with us for the next couple of months. Lest any of you be scandalized, let me say that Abe is just fine with my having an affair with him, were that to happen. Just kidding! Nick is gay. So don't be scandalized. (And hey! Nick! This means I'm 'out' for you!)
My favorite Uncle Sue moment thus far: Nicky came home early one morning nursing a 64-ounce bottle of some sort of cola. Soren, looking up from his pancakes, suddenly wanted only one thing: some of "Sue's juice." I told him no, that it was a grown-up drink and he couldn't have it. He accepted this, but kept a close eye on Nicholas who, much to his horror, drank a little bit more and dumped the rest down the sink. He didn't say anything, but furrowed his eyebrows and I could almost here his thoughts: "Hey! You didn't need to waste that! I'm right here and I'm so thirsty!"
We visited the zoo, ate some delicious food, and spent a lot of time griping and moaning about parenthood while the children squabbled amongst themselves. Oh, and Abe and Nate killed an innocent little birdie.
Tuesday, June 16, 2009
The following are a few miscellaneous things I want to remember about our visit:
The Polynesian Invasion
There was one Polynesian kid in the ICU. At first, his parents were there with him. Then, slowly, relatives and friends began to trickle in. Pretty soon there was a crowd of Polynesians camped out, day and night, in the PICU waiting room. They watched movies and talked and ate a lot. It was like a hospital-sponsored family reunion. I loved it.
One of the hyperactive residents assigned to Liam decided that, as a breastfed baby, he was sure to become anemic and develop rickets, so he prescribed him a gosh-awful multivitamin that stank to high heaven. Liam would immediately throw it up after each dosage. I even asked the doc if it was really necessary to give him a vitamin he threw up, and he said, "Oh, yes, yes. All breastfed babies need supplementation." So I smiled and nodded and threw it in the trash on my way out the door.
While sitting in a nursing stall in the lactation station at PCMC one day, I overheard a girl talking on her cell phone.
"Even if the procedure is successful, she wouldn't live more than a few days," she said. "So we're not going to do it."
"We want to bring her home to bury her."
"We want her to be close to us."
I realized that all around us people were losing babies. Our baby was going to be okay, but not everybody was so lucky. I finished up and, on my way out, saw this sad mommy standing in a corner. I wanted to hug her. I didn't.
The Antsy Nurses
A nurse came into our room at 3:00 AM one morning to check Liam's vitals. She noticed that he was breathing fast (he was always breathing fast) and freaked out. She called in another nurse, and they stood over him, talking and counting his respirations. This, of course, woke him up. He started crying, so I got up, but the first nurse told me, "He's breathing too fast for you to feed him. I'm going to call in the respiratory team." They both skittered out, leaving me with a crying baby. He wasn't breathing any faster than usual, so I sat down and started nursing him. Then Nurse #1 came back in.
"Are you breastfeeding him? You shouldn't be breastfeeding him! He might..."
"Aspirate. Yeah, yeah, I know. He won't, though. He always breathes like this."
"Well, I don't think he should have been released from the PICU." And she bustled back out.
I was so tired and frustrated that I burst into tears. I rocked the baby and cried and cried. Then I took a pillow and a blanket and left to go sleep in a waiting room somewhere else.
Abe says that lights were turned on and respiratory therapists and doctors and nurses came trooping through for the remainder of the night, all to come to the same conclusion: Liam was fine. And it was fine for me to breastfeed.
Which Reminds Me
Everybody in the hospital called it breastfeeding at all times. I never "nursed" the baby. He never "ate." I always "breastfed" him. And he always "breastfed." The nurses would come in and ask, "How long did he breastfeed?" This was fine, just strange. I doubt people weren't asking non-breastfeeding moms, "Has he bottle-fed yet this morning?"
So anyway, this is the end of the saga. I'm happy to be done with this so that I can move on to other posts. I am WAY overdue for newsletters for Soren and Liam and I have several books to be reviewed. So stay tuned! I'll be posting some delightful photos of my beautiful kids.
First, I am so grateful for the medical care we received. Our sweet little smiley chublet baby wouldn't be with us today if it weren't for all the available medical technology and knowledgeable doctors and nurses who helped Liam. I am SO GRATEFUL that I didn't lose my baby.
I am also very grateful that Abe's job has a benefits package that includes comprehensive medical insurance. Of the $67,000.00 in medical bills that we've racked up in the past two months, we will only end up paying about $4,000. That's about 6% of the total bill.
I am grateful that we had friends and relatives who were willing to help out in so many different and wonderful ways (see two posts down).
I am grateful that I had several quiet days to spend with Liam. It was a wonderful chance to get to know him without worrying about taking care of Soren too.
I am grateful that, in our absence, Soren was cared for by people who love him.
I am grateful that our employer was so generous and understanding about our need to be away during this time. I am also grateful for the benefit of sick/vacation leave pay.
I am grateful that Abe was there. He's the best. We talked, we laughed, we went on walks around the hospital grounds, we cuddled together and read books. In some ways, our time at PCMC was like a getaway vacation without any privacy and with very cramped sleeping quarters. (That reminds me of something my friend Holly wrote me once in a greeting card: "I love you like a festering wound that does not hurt but is pleasant.")
Thursday, June 04, 2009
A typical day in my life involves about 20-30 sizable spit-ups, 1-2 poopy toddler diapers(generally one of questionable color and consistency that has leaked onto clothing), 4 poopy infant diapers, and an endless stream of wet diapers. (Ha! Stream!)
Thursday, June 4, 2009, however, proved to be exceptionally dirty.
In addition to giving my hair and clothes their usual milky soaking, Liam also regurgitated on the kitchen floor, his carseat, the bathroom floor, his swing, the living room carpet, my bed, the rocker-recliner, the loveseat, and the couch.
Between baby barfs, Soren worked to make his own contribution. He woke up with a poopy diaper. He smeared the table, a chair, himself, and his mother with peanut butter and jelly. He removed his diaper and peed on the living room carpet. He then ran to his bedroom, where he pooped on the carpet in there. I managed to redirect his efforts to the training potty in the bathroom, which he promptly filled with poo. And some more pee. And while I was cleaning the poop and pee out of the training potty (and off of two wooden blocks that had been dropped in the potty earlier in the day), he peed again-- on the bathroom floor.
When Liam woke up from his nap, I discovered that he had filled his diaper-- and one leg of his jammies-- with yellow feces. I washed the poop out of his jammies (and off his legs and my arm) and thew them in the laundry.
In the meanwhile, Soren was in the kitchen, practicing pouring by filling up a juice pitcher with water and emptying it into an already overflowing glass on the kitchen counter. It took two towels to wipe all of that up.
I put Soren in dry clothes and sent him into the back yard to play while I attempted to pick up the house. In picking up, I discovered a blanket-- fresh out of the laundry after one of Soren's more out-of-control diapers had leaked-- that Liam's earlier diaper had also leaked onto that particular blanket.
Soren came back in with pants and shirt smeared with mud that he had created using an ordinary garden house and a patch of dirt. And by one o'clock, my children had easily worked up an "extra large" load of emergency laundry and several more stains in my cream-colored carpet.
A garbage man doesn't have anything on me. In the two and a half years that I have been a mother, I have been spit up on, thrown up on, pooped on, peed on, cried on, and/or drooled on every single day. I have had all manner of food smeared on my body. I have leaked milk all over myself. I have sucked huge boogers out of little nostrils. I change little outfits multiple times a day. The day after I began the draft of this post, Soren spent his two-hour long naptime digging black poop out of his diaper and smearing it on his bedding and into his carpet. It is a dirty, dirty job, and somebody's got to do it.
I just wish I could afford for that somebody to be somebody else.
Tuesday, June 02, 2009
There were so many wonderful people who helped us out and supported us during the time that Liam was sick. In order of appearance:
1. My parents. I’m nominating these two for canonization, never mind that they’re not Catholic (or even that the Catholics don’t even RECOGNIZE the Mormons as Christian—not that I’m peeved about this or anything). My mom and dad bravely took our energetic two-year-old home and watched over him for the two long weeks that we were away. Words cannot express how grateful I was to know that, while I was away, my little boy was safe and happy with the two people in the world who, after Abe and me, know him and love him the most. Also, my Dad drove six hours in one day (to Salt Lake and back) just to bring us some clothes, toiletry, and bedding and to pick up Marty, who will be mentioned in a moment. Also while we were away, my sweet mother cleaned my house from top to bottom so that I wouldn’t have to come home to a messy home. Not only did she clean my house, she also did my laundry. And hemmed one of my skirts and a pair of pants. And, of course, they phoned and worried and prayed. Like I said, these people are saints.
2. Marty and Collette. My sweet sister also helped out with Soren, taking him many times during those days to give my parents a break. She was often assisted by her children, particularly Tessa, for whom Soren has a strong affinity. Collette further provided support by entertaining me with brief and witty e-mails. And Marty, as you know, roused himself from sleep in the wee hours to drive to Salt Lake with my husband, taking the day off work, going without sleep, and spending the day sitting around in a waiting room with a bunch of fish, a liberal newspaper, and a novel he’d already read. I am so very grateful that he was so unquestionably willing to do this for us.
3. My parents-in-law. Abe’s mom, upon hearing about our situation, immediately called and/or e-mailed everyone she knew and told them to pray for us. We were on temple prayer rolls all across the nation. She also kept in close contact via phone, providing support and love in every way she could from across the nation.
4. The Stirlings. My new surrogate in-laws. I immediately loved these two. They are very warm and unselfish people. I was so touched by their willingness to just come and be there to do anything we needed them to do.
5. Seth and Karen. My bro Seth and his wife Karen visited us in the hospital twice. They let us use their shower, their washer and dryer, and their bed. They took us out for dinner one evening and fed us delicious steaks at their home on another. They periodically texted or called to make sure all was well and to ask if we needed anything. We knew that if we needed a place to stay, their home was open to us.
6. Aunt Doris. My mother’s best friend invited us over for Sunday dinner. She gives the most wonderful hugs. She also fed us delicious steaks and let us use her shower and laundry facilities. After dinner she baked us cookies and sent us back to the hospital with the extras. It was so nice to go to her home and feel like regular people for a while. She also made it clear that we were welcome to stay at her home. She even offered to buy me some underwear (my mom had told her my supply was running a little low).
7. Nicky. Not only did Nicholas provide support and companionship at EIRMC, he also visited us at PCMC. He was in town with a friend to go clubbing, but he took a break from his evening to stop by, see how things were, and bring us some Café Rio.
8. Mark and Rachel Mailhot. Mark is a friend of Abe’s from New Hampshire. He is a wonderful fellow and is married to an even more wonderful woman. They visited us several times during our stay at PCMC and, one day, Mark stayed with Liam while Abe and I went out. They also took us out for dinner on our anniversary. And, one evening, Mark slipped $100.00 into Abe’s pants.
9. Heidi. The indomitable Heidi wrote us a “piano prayer,” recorded herself playing it, and e-mailed it to us. Beautiful.
10. Hillary. Abe’s sister, who lives in Provo, very willingly stayed with Liam one evening while we went to Seth and Karen’s house and relaxed.
11. Miscellaneous. There were also many people who e-mailed, posted on our blog, and called to check on us and offer their support (like my Uncle Dewey, who got off his couch, walked across the street, and inquired multiple times after the welfare of “Sweet William.”) There were lots of prayers and love waves coming our way. Every single gesture of support meant the world to us. It was so nice to know that there were so many people pulling for our little Liam. If I didn’t get a chance to respond to your kindnesses at the time (or even if I did), I want you to know how much your support meant to me and my family. Thank you for your love!
This psychedelic video taken by Seth during their visit to us in the PICU. Please note the chair contraption. Abe and I slept TOGETHER on a bed like this for the duration of our stay at Primary Children's. At one point I grumbled, "I'm tired of sleeping on a 2-foot wide bed with my 2-foot wide husband!" And yes, we could have stayed elsewhere (my Aunt Doris' place, with Seth & Karen, or at Ronald McDonald House), but neither one of us wanted to leave our baby.
Also, note the insane cuteness of my little boy's stretching. He does this regularly. No one makes stretching look fabulous like my little Liam.
Monday, June 01, 2009
Also, I recognize that this is getting a little long. In fact, Abe and I just had the following conversation about the length of this so-called Medical Saga:
Rachel: I think people are going to start thinking, 'I don't give a freaky freak about your freakin' freaky medical freakiness.'
Rachel: Or maybe they'll be like, 'I give a freak, but not THAT much of a freak.'
Abe: It IS pretty freaky.
(So don't feel bad if you don't read it.)
I had switched into fatigue-induced hyperdrive and spent our few quiet moments tidying up our little section of our room (we shared it with two other babies), reading, and making the first of many interminable visits to the Lactation Station down the hall.
At 7:00 AM, the PICU staff kicked us out for the shift change, muttering something about HIPPA and confidential information. My sweet brother-in-law Marty was chillaxin' in the PICU waiting room, so the three of us grabbed some breakfast from the hospital cafeteria. We also made some phone calls and arranged for my daddy to drive to Salt Lake to bring us some more supplies and take Marty back home.
When we returned, Abe immediately fell back to sleep and I curled up with him on the tiny chair/couch contraption referenced below. It took me a long time to finally wind down, but I eventually fell asleep--for the first time since that long nasty night before Liam went to the hospital--for an hour or two.
I was awakened a few hours later by the sound of a couple of PICU nurses whispering to each other, "Do you think we should wake her up?"
"What? Wake me up?"
"You have some visitors."
"Oh. My dad?"
"No. An elderly couple."
"An elderly couple?" I wracked my brain. The only elderly couple I could think of within a 200-mile radius would be my 90-year-old grandparents. I didn't think they would be here.
The nurse shrugged, so I peeled myself off of Abraham and shuffled down to the front desk. First of all, the couple standing at the front desk was most definitely not elderly. They were more along the lines of middle age. Early middle age even. Secondly, I had never seen them before in my life. "Um," I said to the nurse. "Those aren't ours." But the most-definitely-not-elderly-but-more-along-the-lines-of-middle-aged woman looked at me and said, "Are you Rachel?" And I said "Yes." And she said, "We're the Sterlings."
I immediately recognized their name from the Weekly E-mailed Writings of my mother-in-law. They are friends of Abe's family from New Hampshire who recently transplanted themselves Out West, as those Easterners call it, to be nearer their children.
And I'll let Sister Sterling take it from here. The following is an e-mail she sent to the family after their visit.
(Sister Sterling, I hope you don't mind that I'm using your letter! You can sue me for copyright violation, I suppose. You might win all five of our dollars.)
Hello good friends,
We are tired - I won't mince words about that! Not used to standing next to a small crib in a hospital for 5 hours but we did it and grew very much attached to that little boy Skousen. He has a wonderful presence about him.
(Editor's note: He does! Liam does have a very special presence.)
We recieved word yesterday morning via E-mail that Abe and Rachel were at Primary Children's in Salt lake. We talked about how to help - then Felt said - let's go, we don't have anything that has to be done here - so off we went. We had never been to Primary Children's before. But we followed the H signs for Hospitals and got there very easily.
What a place. It is very large - over 300 beds just for children who are really in trouble. We asked for William Skousen and discovered that there were 3 boys there named William Skousen and one of them born about a month after the William we wanted. We found the correct one and made our way to the PICU Prediatric Intensive Care Unit. We had to wash our hands (we did this over and over again all day long) and use a phone get get past the door. The nurse then went to get Rachel, and when she arrived she did not know who we were and looked so tired. We introduced ourselves and she recognized the name and she immediately took us to William and to Abe (who was very sound asleep on a chair couch contraption). William's color was good - nice and pink and you could tell right away he was a nursing baby - he was a good size for 7 weeks. Of course he was on 60% oxygen at that time and so he should have looked good. We insisted that they let us take them downstairs for lunch they had not eaten or slept much. Rachel's brother-in- law - who had driven Abe to SLC - was also there waiting for Rachel's Dad to come get him. He seemed to be a very nice man. We all trooped downstairs and had lunch and a nice visit in the cafeteria. The food was not bad for a hospital.
While visiting with us, Rachel turned to me and said "there is something you could do for us." I of course agreed and then she asked us to stay with William while they went to her brother's in Layton and showered and slept some. We went back up to the PICU and the nurses accepted us as if we were family. When each new nurse, doctor, or treatment person came they said something like, "Oh, I have some surrogate grandparents also." So we were very comfortable.
Now for the health part. William was on a raised flat bed with small plastic sides; he had a blood pressure cuff on one foot and an oxygen level reader on the other. He has an IV for antibiotics in one hand with it taped to a small board and a sock over that. He had chest leads from his heart and lungs and a nasal cannula providing pressured oxygen all the time. That was just in his nose (not a ventilator) and the tubes ingeniously went up to a cap on his head with velcro tabs that kept it out of his way.
Until Rachel and Abe left us he had been asleep or resting each time we saw him. Rachel said they were going to come put a tube down his nose into his stomach to feed him and she did not want to be there for that. So off they went and we had to hone up our grandparenting skills. William had a RN to himself; in fact, all the children in the PICU had individual nurses. Many of the children, if not most of them, seemed to be much sicker than William is/was. We were so impressed with the care and ability of all those who were there.
William decided that we were not family and he woke and fussed some . We learned how to comfort him without picking him up - not allowed by us -- and I never saw Rachel hold him either. I think they were still evaluating him to some degree. We learned to pat his back or tummy until he could drift off to sleep and how to sweeten up the pacifier. They did eventually come and put the tube down his nose - we left and stood outside. Nothing we could do would have made it any better. That of course exhausted him and he slept for a while after that experience - then they came and woke him up to take an x-ray to make sure the tube was in the correct place beofre they could feed him. Finally he was able to get some breast milk that had been stored from Rachel, I suppose: it was an automatic infusion slowly down this tube into his upper intestine. They did not want anyhing in his stomach that could come back up and get in his lungs. What an education we got! We asked so many questions all day long and met so many wonderful people. Felt made friends with the respiratory therapist and we met some very nice young doctors.
Shift change came a little after 7 pm and they told us when the new nurses arrived we would have to leave. I guess it is for confidentiality purposes. We thanked our nurse and the others we saw and left. We still had not found Rachel and Abe. Then there they were all smiles and looking clean and a little rested. They were not able to get in to William until the shift change was complete. We surely hope that today things are going well. The nurses told us he would likely get worse before he got better. I guess they thought it was more RSV than pneumonia. That is a nasty virus that abounds in small children and infants.
We left just marveling at how good we felt to be able to serve and how glad we are that we never had to have that experience with our children. Also, what a glorious time we live in where there is so much help available to all of us with the medical advances and technology. Also very glad to be able to go back to our own home and bed and get some sleep. I hope that Rachel (and Abe) will be able to find a place to sleep - maybe Ronald McDonald house - and they do have parent sleeping rooms and showers right there off the waiting area.
We wanted you folks to know that last night at 7 pm he was doing well and must have been improving since they reduced the pressure on the machine that was helping him breath and had reduced the oxygen flow to 40%.
Thanks so much for letting us know about this. We know first hand how hard it is to be so far away and have your children and grandchildren need help. I feel certain that he is in the best place possible under these circumstances. and is getting superior care. We told Rachel that we would check back during the week when we go down to pick up Geoff and Linda Parkerson from the airport. And to call us if they needed another break.
Today we finally have spring!!! Warm air, lots of blue sky, and sunshine. We are going to go get dirt (and maybe even some cool weather plants) to put in the pots and get ready to drive up to Idaho tomorrow to do a Trek Fireside for our son Scott's ward, which is going on Trek this summer.
Keep us posted and know we love and care about you and your families.
hugs all around,
Ruth Ann and Felt
PS Our daughter Julie will be working at the PICU at Primary this Tuesday. If William is still there she will check on him and report what she can.