Saturday, June 27, 2009
Old Pictures
Tuesday, June 16, 2009
Liam's Medical Saga: Bits and Pieces
So, I've really posted the most important stuff. Basically, we were in intensive care for four days, then moved to the regular infant unit, where we stayed for nine more days. Liam continued to improve gradually over that period of time. I could tell he was fine and we were just wasting time/money/bed space, so I finally demanded that we be released, and they sent us home with a tank of oxygen and a kick in the pants.
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.
The Multivitamin
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.
Sad
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."
Pause.
"We want to bring her home to bury her."
Pause.
"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.
Sigh.
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.
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.
The Multivitamin
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.
Sad
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."
Pause.
"We want to bring her home to bury her."
Pause.
"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.
Sigh.
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.
Liam's Medical Saga: Gratitude List
There were some good things about this experience, and they were things I thought about a lot while we were in the hospital.
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.")
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
We interrupt this medical saga for an emergency complaint.
If motherhood hasn't been featured yet on "Dirty Jobs," the Discovery Channel needs to send Mike Rowe to my house.
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.
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
The Nice People Hall of Fame
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!
Another Vid (My apologies to the in-laws with a dial-up connection to the internets.)
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
The Knowledge of Nations...
This is my brother Seth with my husband Abe in the PICU at Primary Children's. They're both insane.
Pictures
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.'
Abe: ...
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.)
Liam's Medical Saga: A Guest Writer
And the morning came, with our boy breathing much easier than he had for days. It was a relief to see him sleeping peacefully and, except for occasional visits from a respiratory therapist, largely unmolested.
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.
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.
Sunday, May 24, 2009
Liam's Medical Saga, III
Primary Children's is sending a fixed-wing airplane to pick up Liam. One parent, they tell us, is allowed to accompany the patient. The other one will have to drive. Abe goes home to gather up a few more things and start the drive to Salt Lake. He insists that he can drive alone. As he leaves, I ask, "Are you sure you don't want me to call Marty? Or Nick? They could ride with you and keep you awake." "No, no, I'll be fine," insists Abraham. As soon as he is out of the room, the slightly neurotic alpaca-loving RT looks up from torturing my infant with her deep nasal suctioning and says, "Call Nick. Or Marty. Also, maybe they'll let you breastfeed on the airplane."
The next few hours I spend puttering around, gathering up our belongings, eating, pumping, making phone calls, sending text messages. I call my sister, awakening her out of a deep sleep, and ask if she could spare her husband for a ride up to Salt Lake. "Um, um," she says, and I can almost see her shaking her head and trying to pull off the cobwebs. "Um. I'm so tired. Hold on. Um, I think Marty has to go to work in the morning." I feel like a louse for waking her up and making such a hearty demand. Tears fill the back of my eyes. "Right," I say. "Duh. Sorry. Love you." I hang up.
My text message awakens Loriann, who immediately calls to tell me that she loves us and is praying for us.
Abe calls later to tell me that Marty is riding with him to Salt Lake.
I keep dipping the pacifier in sugar water and plugging it into the baby's mouth.
1:00 AM
Three people comprise the Life Flight team: Lisa, an efficient young woman with kind brown eyes and black buns on the sides of her head, Dave the pilot, and a sleepy-looking blond woman whose name I immediately forget. Two members of the Idaho Falls Fire Department are there to man the ambulance that will take us to the airport. The younger one tells me that his little girl spent some time at Primary Children's Hospital last year. "They are very good there," he says.
Dr. Hatch is still watching over the process. He looks exhausted. I shake his hand as the the team loads Liam into an incubator and start rolling him in a gurney toward the exit. I say, "Thank you so much for everything." What I want to say is, "You are a good egg."
1:15 AM
The fireman who drives the ambulance is in his forties. "Those kids," he says, "They're nothing if not a source of worry." He tells me he has two daughters, ages sixteen and nineteen. The older one just recently moved out, got a job, her own place. We talk about the weather. Isn't it crazy, how it can be snowy one minute and sunny the next? "If you don't like the weather in Idaho," he says, "Just wait a minute and it'll change." I laugh like I've never heard that one before. We drive along in silence and I imagine that he drinks coffee out of a thermos and votes a straight Republican ticket. I wish I were five and could sit in his lap.
1:30 AM
The airport is windy and Dave lets me wear his Life Flight jacket. He gives me the mandatory pre-flight emergency exit/under-seat flotation device/oxygen mask/safety belt lecture. Liam's gurney is loaded onto the plane.
1:45 AM
Take-off. I am surprised at how many lights are on in Idaho Falls at this hour. It is beautiful. I try to enjoy the flight, as I imagine it is costing me one thousand dollars a minute.
2:00 AM
Liam is screaming and I can't even touch him. I see him in his incubator, attached to tubes and hoses, flailing his little arms around and screaming so hard his face has gotten splotchy. I pray. "Dear God, he is so little. He doesn't understand any of this. I can't comfort him right now. I can't do anything for him right now. Will you please send someone to comfort him for me? Please, Father, you know I don't ask anything for myself. All I want is for you to spare an angel, perhaps, someone you don't really need, for just a few moments to come comfort him. Please, Father, please. He is so little. He is so innocent. Please." I beg and plead for several more minutes. Then I wait. Nothing changes. Liam continues to scream, continues to flail. This is the first time I've prayed since Liam got sick. It is also the last.
2:30 AM
Lisa looks up at me and shouts over the noise of the plane, "It must be so hard for you to see him so hungry and not be able to do anything!" I nod. "I'm sorry!" she says. The blond lady has fallen asleep.
3:00 AM
Salt Lake. The ambulance driver who takes us from the airport to the hospital is a darling man whose accent reminds me of Brad Pitt's in Seven Years in Tibet. From this I conclude that he is Austrian. "What is up with the little pumpkin?" he asks, jerking his head toward the back of the truck, and I love him instantly. I love him even more when he says, "Do not be alarmed if I run some red lights. At this time of night, I'm not going to sit at a light where there isn't any traffic." He, like the first ambulance driver, also has two daughters, though his are little: four and six months. He tells me that they taught their older daughter ASL to help assuage the terribleness of her twos. We drive down an empty street lined with trees and old Victorian houses.
3:20 AM
I don't remember how we got to the PICU. I remember getting out of the ambulance and handing over the Life Flight jacket; next I remember standing next to my baby while a team of medical personnel hover over him, giving him a new IV, poking his heel yet again, trading his little nasal cannula for the bulkier CPAP, which is attached to hoses instead of tubes. A girl in a brown ponytail shakes my hand. "I'm Dr. So-and-So," she says. "I'll be taking care of William tonight." I wonder if she's over twenty. The crib next to ours is occupied by a nine-month-old who is also attached to oxygen and IVs. His Mom, who looks like she's about my age, is bowed over in a rocking chair next to him, fast asleep. I am sorry we are making such a ruckus.
3:30 AM
It's all I can do to keep from ripping the head off the next person who comes in to draw yet another blood sample from my six-week-old's heel. I want to scream at her: "There is NO BLOOD LEFT! He only weights twelve pounds! Leave him the hell alone!"
3:40 AM
Abe arrives. I am grateful he is there to hold me.
4:00 AM
Liam's respiratory rate has dropped from 80-90 to 60-70. His chest retractions have been reduced considerably. His blood glucose levels are up. Abe falls asleep on the chair/bed next to his crib.
The next few hours I spend puttering around, gathering up our belongings, eating, pumping, making phone calls, sending text messages. I call my sister, awakening her out of a deep sleep, and ask if she could spare her husband for a ride up to Salt Lake. "Um, um," she says, and I can almost see her shaking her head and trying to pull off the cobwebs. "Um. I'm so tired. Hold on. Um, I think Marty has to go to work in the morning." I feel like a louse for waking her up and making such a hearty demand. Tears fill the back of my eyes. "Right," I say. "Duh. Sorry. Love you." I hang up.
My text message awakens Loriann, who immediately calls to tell me that she loves us and is praying for us.
Abe calls later to tell me that Marty is riding with him to Salt Lake.
I keep dipping the pacifier in sugar water and plugging it into the baby's mouth.
1:00 AM
Three people comprise the Life Flight team: Lisa, an efficient young woman with kind brown eyes and black buns on the sides of her head, Dave the pilot, and a sleepy-looking blond woman whose name I immediately forget. Two members of the Idaho Falls Fire Department are there to man the ambulance that will take us to the airport. The younger one tells me that his little girl spent some time at Primary Children's Hospital last year. "They are very good there," he says.
Dr. Hatch is still watching over the process. He looks exhausted. I shake his hand as the the team loads Liam into an incubator and start rolling him in a gurney toward the exit. I say, "Thank you so much for everything." What I want to say is, "You are a good egg."
1:15 AM
The fireman who drives the ambulance is in his forties. "Those kids," he says, "They're nothing if not a source of worry." He tells me he has two daughters, ages sixteen and nineteen. The older one just recently moved out, got a job, her own place. We talk about the weather. Isn't it crazy, how it can be snowy one minute and sunny the next? "If you don't like the weather in Idaho," he says, "Just wait a minute and it'll change." I laugh like I've never heard that one before. We drive along in silence and I imagine that he drinks coffee out of a thermos and votes a straight Republican ticket. I wish I were five and could sit in his lap.
1:30 AM
The airport is windy and Dave lets me wear his Life Flight jacket. He gives me the mandatory pre-flight emergency exit/under-seat flotation device/oxygen mask/safety belt lecture. Liam's gurney is loaded onto the plane.
1:45 AM
Take-off. I am surprised at how many lights are on in Idaho Falls at this hour. It is beautiful. I try to enjoy the flight, as I imagine it is costing me one thousand dollars a minute.
2:00 AM
Liam is screaming and I can't even touch him. I see him in his incubator, attached to tubes and hoses, flailing his little arms around and screaming so hard his face has gotten splotchy. I pray. "Dear God, he is so little. He doesn't understand any of this. I can't comfort him right now. I can't do anything for him right now. Will you please send someone to comfort him for me? Please, Father, you know I don't ask anything for myself. All I want is for you to spare an angel, perhaps, someone you don't really need, for just a few moments to come comfort him. Please, Father, please. He is so little. He is so innocent. Please." I beg and plead for several more minutes. Then I wait. Nothing changes. Liam continues to scream, continues to flail. This is the first time I've prayed since Liam got sick. It is also the last.
2:30 AM
Lisa looks up at me and shouts over the noise of the plane, "It must be so hard for you to see him so hungry and not be able to do anything!" I nod. "I'm sorry!" she says. The blond lady has fallen asleep.
3:00 AM
Salt Lake. The ambulance driver who takes us from the airport to the hospital is a darling man whose accent reminds me of Brad Pitt's in Seven Years in Tibet. From this I conclude that he is Austrian. "What is up with the little pumpkin?" he asks, jerking his head toward the back of the truck, and I love him instantly. I love him even more when he says, "Do not be alarmed if I run some red lights. At this time of night, I'm not going to sit at a light where there isn't any traffic." He, like the first ambulance driver, also has two daughters, though his are little: four and six months. He tells me that they taught their older daughter ASL to help assuage the terribleness of her twos. We drive down an empty street lined with trees and old Victorian houses.
3:20 AM
I don't remember how we got to the PICU. I remember getting out of the ambulance and handing over the Life Flight jacket; next I remember standing next to my baby while a team of medical personnel hover over him, giving him a new IV, poking his heel yet again, trading his little nasal cannula for the bulkier CPAP, which is attached to hoses instead of tubes. A girl in a brown ponytail shakes my hand. "I'm Dr. So-and-So," she says. "I'll be taking care of William tonight." I wonder if she's over twenty. The crib next to ours is occupied by a nine-month-old who is also attached to oxygen and IVs. His Mom, who looks like she's about my age, is bowed over in a rocking chair next to him, fast asleep. I am sorry we are making such a ruckus.
3:30 AM
It's all I can do to keep from ripping the head off the next person who comes in to draw yet another blood sample from my six-week-old's heel. I want to scream at her: "There is NO BLOOD LEFT! He only weights twelve pounds! Leave him the hell alone!"
3:40 AM
Abe arrives. I am grateful he is there to hold me.
4:00 AM
Liam's respiratory rate has dropped from 80-90 to 60-70. His chest retractions have been reduced considerably. His blood glucose levels are up. Abe falls asleep on the chair/bed next to his crib.
Sunday, May 17, 2009
Liam's Medical Saga, Part II
11:00 AM
Abe returns from dropping Soren off at Grandma’s house. Someone brings us boxed lunches. I nurse Liam for what ends up being the last time in five days. The nurse says his oxygen saturation level will probably go down while I feed him. Instead, it goes up.
11:30 AM
Liam and I take a ride on a gurney. I try to enjoy the fact that I’m being wheeled down the hall of a hospital while fully conscious, but I mostly feel self-conscious, as everyone who passes tries not to stare.
11:35 AM
We are given a room in the pediatrics unit and I answer the same questions I answered first at the doctor’s office, then multiple times in the ER. Liam trades in his oxygen mask for a nasal cannula. We are assigned a nurse, Micky, and a respiratory therapist, Heidi. Everyone keeps commenting on how hard Liam is working to breathe.
For the rest of the day, Micky comes in at least every hour to check Liam’s breathing and oxygen saturation levels. People come in periodically to draw blood from his heel. Every two hours, Heidi pounds on Liam’s back with a little stick called a percussor for several minutes, which he loves, then does a “deep suctioning” of his nasal cavity, which he hates.
NOON
Dr. Baker, our family practitioner, shows up. I am relieved to see him. Not only do I have a mild crush on the man, I trust his opinion and know from past experience that he won’t recommend any unnecessary interventions for my baby. He looks at Liam, listens to his lungs, then says: “He’s doing okay right now, but I’m wondering how long he’ll be able to sustain this sort of effort. If he gives out, this is not the place to do it. I’m thinking he’ll need to be transferred to Primary Children’s.”
We are then introduced to the pediatrician on call, Dr. Hatch, who stays at the hospital with us, keeping a close eye on Liam, for the rest of the time we’re at EIRMC. He puts Liam on three different antibiotics, “just in case” the infection causing all this is bacterial. Dr. Hatch wants to put the baby on CPAP (Continuous Positive Airway Pressure) but is told that at EIRMC only preemies can be put on CPAP.
The rest of the day is spent holding Liam’s hand (and stroking the tiny patch of head not covered by a bandage) while he is poked, prodded, pounded, listened to, observed, suctioned, and given albuterol treatments. Abe and I learn about respiratory rates and pass the time counting his breaths per minute. When this gets boring we try to remember all the states and their capitals.
4:00 PM
I am so full of milk I can’t bend over. I beg for, and am given, a breast pump kit. The medical staff says I am not allowed to nurse the baby because he’s working hard enough just to breathe; eating would just be too hard for him right now. They are also afraid he might aspirate, which would exacerbate his pneumonia. I think this might be a bunch of hogwash, remembering our experience in the emergency room, but it might not. I don’t want to risk it. I wish I had a medical degree.
4:30 PM
My mom leaves Soren with Grandpa and drops by for a quick check-in.
6:00 PM
Collette and Marty stop in for a visit.
7:00 PM
Liam’s blood gas reading shows surprisingly healthy levels of oxygen and carbon dioxide. The doctor thinks we might not have to transfer him after all.
8:00 PM
I send Abe home to get some toiletries and pajamas so that I can spend the night with Liam in the hospital.
8:15 PM
I don’t want to be alone while Abe is gone, so Nicholas comes over to sit with us for a while. He brings a deck of cards, a DVD, and a pile of reading. He holds up books: Mother Theresa: Come Be My Light, “or, if you want something lighter,” The National Geographic “or, if you want something even lighter,” Elle Décor. We talk politics and giggle.
9:00 PM
Liam is ravenous. He tries to vigorously suckle anything that comes near his mouth. The nurse brings in a magical substance called “Sweet-Ease” (basically: sugar water). I dip his pacifier in the sugar water and give it to him. He sucks it off quickly, spits out the pacifier, and screams for more. I spend much of the rest of the evening making sure he has enough sweets.
9:30 PM
Abe comes back.
10:00 PM
We are assigned a new respiratory therapist. She has wild hair and even wilder eyes. She slaps the percussor haphazardly around Liam’s back. Every time we are alone in the room, she looks around conspiratorially and says things like, “I’m not supposed to say anything, but I think you should nurse him.” “The doctor won’t let you breastfeed because he’s a man and doesn’t understand anything.” “I think you should just close the door and nurse the baby.” She tells me about her Alpaca cooperative. We talk knitting.
11:00 PM
A blood gas reading shows that Liam’s CO2 levels are increasing. This is a bad sign, according to Dr. Hatch, who says that it indicates that his respirations aren’t doing their job as efficiently as they should. “He may go into respiratory failure and need to be intubated,” he told us. “And if he does, it would be better for that to happen at Primary Children’s so we wouldn’t have to transfer him while intubated. I’ll call in the emergency response team. They should be here in about two hours.”
Abe returns from dropping Soren off at Grandma’s house. Someone brings us boxed lunches. I nurse Liam for what ends up being the last time in five days. The nurse says his oxygen saturation level will probably go down while I feed him. Instead, it goes up.
11:30 AM
Liam and I take a ride on a gurney. I try to enjoy the fact that I’m being wheeled down the hall of a hospital while fully conscious, but I mostly feel self-conscious, as everyone who passes tries not to stare.
11:35 AM
We are given a room in the pediatrics unit and I answer the same questions I answered first at the doctor’s office, then multiple times in the ER. Liam trades in his oxygen mask for a nasal cannula. We are assigned a nurse, Micky, and a respiratory therapist, Heidi. Everyone keeps commenting on how hard Liam is working to breathe.
For the rest of the day, Micky comes in at least every hour to check Liam’s breathing and oxygen saturation levels. People come in periodically to draw blood from his heel. Every two hours, Heidi pounds on Liam’s back with a little stick called a percussor for several minutes, which he loves, then does a “deep suctioning” of his nasal cavity, which he hates.
NOON
Dr. Baker, our family practitioner, shows up. I am relieved to see him. Not only do I have a mild crush on the man, I trust his opinion and know from past experience that he won’t recommend any unnecessary interventions for my baby. He looks at Liam, listens to his lungs, then says: “He’s doing okay right now, but I’m wondering how long he’ll be able to sustain this sort of effort. If he gives out, this is not the place to do it. I’m thinking he’ll need to be transferred to Primary Children’s.”
We are then introduced to the pediatrician on call, Dr. Hatch, who stays at the hospital with us, keeping a close eye on Liam, for the rest of the time we’re at EIRMC. He puts Liam on three different antibiotics, “just in case” the infection causing all this is bacterial. Dr. Hatch wants to put the baby on CPAP (Continuous Positive Airway Pressure) but is told that at EIRMC only preemies can be put on CPAP.
The rest of the day is spent holding Liam’s hand (and stroking the tiny patch of head not covered by a bandage) while he is poked, prodded, pounded, listened to, observed, suctioned, and given albuterol treatments. Abe and I learn about respiratory rates and pass the time counting his breaths per minute. When this gets boring we try to remember all the states and their capitals.
4:00 PM
I am so full of milk I can’t bend over. I beg for, and am given, a breast pump kit. The medical staff says I am not allowed to nurse the baby because he’s working hard enough just to breathe; eating would just be too hard for him right now. They are also afraid he might aspirate, which would exacerbate his pneumonia. I think this might be a bunch of hogwash, remembering our experience in the emergency room, but it might not. I don’t want to risk it. I wish I had a medical degree.
4:30 PM
My mom leaves Soren with Grandpa and drops by for a quick check-in.
6:00 PM
Collette and Marty stop in for a visit.
7:00 PM
Liam’s blood gas reading shows surprisingly healthy levels of oxygen and carbon dioxide. The doctor thinks we might not have to transfer him after all.
8:00 PM
I send Abe home to get some toiletries and pajamas so that I can spend the night with Liam in the hospital.
8:15 PM
I don’t want to be alone while Abe is gone, so Nicholas comes over to sit with us for a while. He brings a deck of cards, a DVD, and a pile of reading. He holds up books: Mother Theresa: Come Be My Light, “or, if you want something lighter,” The National Geographic “or, if you want something even lighter,” Elle Décor. We talk politics and giggle.
9:00 PM
Liam is ravenous. He tries to vigorously suckle anything that comes near his mouth. The nurse brings in a magical substance called “Sweet-Ease” (basically: sugar water). I dip his pacifier in the sugar water and give it to him. He sucks it off quickly, spits out the pacifier, and screams for more. I spend much of the rest of the evening making sure he has enough sweets.
9:30 PM
Abe comes back.
10:00 PM
We are assigned a new respiratory therapist. She has wild hair and even wilder eyes. She slaps the percussor haphazardly around Liam’s back. Every time we are alone in the room, she looks around conspiratorially and says things like, “I’m not supposed to say anything, but I think you should nurse him.” “The doctor won’t let you breastfeed because he’s a man and doesn’t understand anything.” “I think you should just close the door and nurse the baby.” She tells me about her Alpaca cooperative. We talk knitting.
11:00 PM
A blood gas reading shows that Liam’s CO2 levels are increasing. This is a bad sign, according to Dr. Hatch, who says that it indicates that his respirations aren’t doing their job as efficiently as they should. “He may go into respiratory failure and need to be intubated,” he told us. “And if he does, it would be better for that to happen at Primary Children’s so we wouldn’t have to transfer him while intubated. I’ll call in the emergency response team. They should be here in about two hours.”
Thursday, May 14, 2009
Liam's Medical Saga, Part I
There's so much to say about this little medical adventure we've been having that I think I'm going to start posting about it in themed installments. I'll start out by describing how we got here and what they've been doing to our boy. Then, over the next several posts, I'll fill in the details as I see fit.
April 12 - April 13 . Liam starts coughing. It's just a little cough, though, and everything else seems fine, so I don't worry about it.
Night time. Liam's starting breathing a little faster and seems uncomfortable. During the night, after his feedings, Abe cuddles the baby and keeps an eye on his breathing. We decide something might be wrong. I have to get a physical done in the morning for my job, so I decide to bring Liam along with me and have the doctor take a look at him. My appointment is scheduled with Dr. James Brook, a rogue doctor who has decided that healthcare these days is going in the wrong direction. He has taken a step back, working to offer "modern medical care with old-time service." He's not our family's usual doc, but Harbor House (my place of employment) likes to work with him.
April 15
8:00 AM. Liam seems considerably better in the morning, and I almost feel silly bringing him to the appointment with me. I decide to do it anyway. Dr. Brook completes my physical, declares me whole, and then looks at the baby. After some assessing, he says, "It looks like he's got bronchialitis. Let me prescribe him a steroid (prednisolone) to help open his airways. Keep an eye on his breathing and give me a call--even in the middle of the night-- if it seems bad." I am proud to note that he weighs 12 pounds, 15 ounces—a weight gain of almost 6 pounds since birth.
9:00 AM. I take Liam to work with me, but he's so fussy I can't get anything done. We leave after an hour. My mom watches the boys for me while I take a nap.
6:00 PM. Documentary night! I make Chicken Tortilla soup. It's delicious.
7:00 PM. Liam seems worse. He’s very pale. I wonder if his lips are looking a little purple. Abe and I are unsure whether we should call the doctor or if we're just being Nervous Nelly parents. Nick mentions— not to freak us out or anything—that a baby in Idaho Falls recently died of Whooping Cough. I google Bertessis to see if Liam's symptoms match. They don't. We call our home teacher, Brady Cook, who comes over and assists Abe in giving Liam a priesthood blessing. Abe cries. We both feel better and go to bed shortly thereafter.
9:00 PM. Liam sleeps in the crook of Abe’s arm so that he can keep an eye on him. It’s a rough night. Liam’s breathing hard and blowing bubbles. Abe tells me that at one point in the night, Liam looked up at him with big sad eyes as if to say, “What’s happening, Daddy?” He’s still nursing, though, which we take to be a good sign.
April 16
7:00 AM. My baby looks like a corpse. He is very pale, his lips and fingernails are purple, and his eyes are dark and unresponsive. I feed Soren breakfast and call the doctor. He rearranges his schedule to see us immediately. I load up both the children and drive to Idaho Falls. My mind is hazy and I get lost on the way to the doctor’s office. I have to call to get directions even though I was there just yesterday.
8:30 AM. Dr. Brook listens to Liam’s breathing, takes his blood oxygen saturation levels (they’re at 80%-- they should be well over 90%), gives him a dose of Albuterol, and tells me my baby needs to be in the hospital on oxygen. “Take him to the emergency room,” he instructs. Soren has taken out every single toy in the office and scattered pieces everywhere. I frantically try to pick everything up, encouraging him to help (he doesn’t). A lady in the waiting room watches without expression. The doctor asks if I’m new in the area: do I need directions to the hospital? I tell him I’m not and that I should be able to find it. “Just turn right on Holmes,” he says, “Then left on 17th. That will take you to Channing Way. It’s a big brown building. You can't miss it.”
9:00 AM. I call Abe and tell him we’re going to the Emergency Room. He knows immediately (but does not say) that we will end up at Primary Children’s Medical Center. I think we’ll just be in the ER for a few hours, fueling up on oxygen, and then will be on our merry way.
9:15 AM. Liam is surrounded by people in the Emergency Room. He is lying on an adult-sized hospital bed. They hook him up to monitors, hold an oxygen mask over his face for oxygen, take a blood sample from his heel. Someone comes in and takes x-rays. A respiratory therapist shoves a suctioning tube up each nostril and deep into his nasal cavity. A crowd of women poke him in multiple places and finally get an IV inserted in his head, which they wrap with gauze, making him look like he’s got a serious head injury. I quickly learn how to read the monitor that measures his oxygen levels and heart rate. Soren keeps screaming that he wants to play with toys. I dig through my purse and find a little bag of conversation hearts, which I give to him on the condition that he sit on a chair in the corner while he’s eating them. He sits on the chair and eats his candy. He looks very small. Daddy shows up, squeezes Liam’s little hand, and takes Soren into the waiting room.
9:30 AM. Soren pulls his penis out of his diaper and pees all over Abraham.
Sunday, May 03, 2009
Home Again
On April 28, after 13 days in the hospital, we were finally able to come home. Liam spent two more days on oxygen and is now back to his happy self. I'm working on the saga and will post it in installments soon.
Saturday, April 18, 2009
Liam
Just wanted those who haven't heard yet that we're in Primary Children's Hospital intensive care unit with Liam right now. I'll post details later-- I just found a computer while wandering around looking for a place to pump and thought I'd do a quick post. He's got HMPV (human meta-pneumo virus) that developed into a serious case of pneumonia. He's been fighting really hard and it looks like he'll recover, but we could definitely use all of your prayers. (I know many of you are already praying for him.) We flew in early Thursday morning and it looks like we'll be in the ICU for a few more days.
Sunday, April 05, 2009
Sleep Deprivation
I thought it was funny that we were scheduling our new baby's arrival and so wrote it on the calendar. Abraham, seeing this, added the above commentary about life after a new baby comes home.
And wow, has it ever been true. Until a few days ago, I hadn't had anything longer than a 2 1/2 hour stretch of sleep since Liam was born.
When I'm extremely sleep-deprived, a weird thing happens to my brain: it starts counting. Sometimes by ones, sometimes by fives, but also by weird things like eights, eighteens, and twenty eights. When Soren was a newborn I counted by elevens a lot. I think this is my brain's last-ditch attempt at staying awake when I need to function, which is good, I suppose, except that it makes it difficult for me to fall asleep when I do get the chance.
I finally purchased "On Becoming Baby Wise" in a fit of desperation, read the entire thing in one evening, and began implementing its principles Thursday night. And you know what? We've been sleeping better. I kind of want to find the authors and give them medals. For the past three nights, Liam has slept for three-four hour long stretches, affording me the chance to participate in a full sleep cycle. It's been nothing short of miraculous.
P.S. If you are one of those people whose newborn slept through the night at two weeks old, I don't like you and don't think we should be friends anymore.
P.P.S. If you are a Dr. Searsian, don't judge me. Dr. Sears is a horrible misogynist pig and I wish he had never been born.
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