Benson, Tetralogy of Fallot (Part 5) Chylothorax

Aaron and I decided that we would split the time during the day with Benson. One of us would get there early in the morning, the next would go after dinner, and stay until about 10:00 or so. Since he was still so little, and we needed rest, we left him at night in the capable hands of the nurses and slept at Aaron’s dad’s house. The next day we would switch, until I was able to resume nursing. Aaron started the first shift at night since I spent all day at the hospital with Benson during his surgery.

About half way through Aaron’s shift the first or second day after the surgery, and after they had started to feed him some of my expressed breastmilk, he called with some disturbing news. There was a complication in surgery. The drainage tubes in his chest were draining chylo– basically fat and cholesterol. Benson’s lymphatic system was damaged, and was unable to process the fat from my pumped breast milk, and it was leaking into his chest cavity. This condition is somewhat rare, and is called Chylothorax. Untreated, Benson would slowly be asphyxiated as the chylo built up around his lungs and crushed them. The nourishment that was the absolute best for him was suddenly deadly and he was put on a fat free diet. He was not allowed to nurse for 6 weeks, and the chest tubes were to stay in until he was no longer draining chylo.

I was devastated. And angry. FURIOUS. I worked SO hard to get him to nurse the first time, and I HATE pumping! And I wanted him to get the best nourishment possible and was being told that my milk as it was would kill him. I was ready to throw in the towel, right then and there! I continued pumping anyway, hoping for some sort of solution, and within a day or so, Benson was moved up a floor to the CSU. And I vented on Facebook.

PCMC has a great Lactation department. And they have state-of-the-art equipment. So they offered to “spin” my milk in a special centrifuge and remove all of the fat. He still needed the calories, so the fat-free breastmilk was then supplemented with formula. We started off with a fat-free formula called Enfaport. And the screaming began. Benson was usually a very calm baby, but nothing we did could soothe him. For days this continued. It was difficult to get him to sleep, and to stay asleep. Despite simethicon (sp? a generic Mylicon), and all of the other pain meds he was on, we could tell he was just plain uncomfortable, and would SCREAM every time we tried to feed him. And his diapers were GROSS. We were all just stumped. So, I felt prompted to ask if there were other formula options for Benson. They did some hunting and discussing with the nutritionist, and came up with Vivonex T.E.N., an adult liquid diet formula powder. It had the correct calorie count that he needed, so we gave it a try. Instant relief! Benson was soon a much happier baby. Hooray for switching formulas!

Aside from the oxygen, and an IV, a tubeless Benson. Still very swollen from surgery.

With that, Benson continued to rest up, the chest tubes were removed one by one, and Aaron and I continued to take turns staying with him. I continued to pump and to freeze. They didn’t need nearly as much milk as I was pumping since they were spinning and supplementing. They were using breastmilk and formula at a 50/50 ratio. I had them spin my milk, and then we froze it and used it as needed. My biggest worry was when we got home. If I was going to continue pumping, I wanted and needed to know that he could drink it somehow. The thought of pumping and storing and never being able to use it, and to put him on formula, depressed me and I felt very discouraged. My feelings were that if I couldn’t use my milk to feed my son, then I was done. I hated pumping enough to just give up once we were out of the hospital, unless we could find another option. There was no hospital nearby in Montana that had the ability to spin my milk. And I vented on Facebook again.

Once Benson was on a formula that was not distressing him, he bounced back very quickly. Apparently the typical stay at the hospital after heart surgery is 7-11 days, give or take. We were out in 8 days. Benson recovered well, and aside from the awful, horrible chylothorax (easily treatable, thankfully), he had no other complications. He had daily x-rays to make sure the chylo was clearing up (and it was), and when the day to be released came, it was bliss!!! We stuck around in SLC for another week just to make sure things were healing as they should.

Once Benson was out of the hospital, Aaron took the opportunity to go and work a little at the SLC airport. And I took on the 4 kids myself. We found some activities to do, some as an entire family, some with me and the boys, and some with my friend and mission companion Anna (Townsley) Clegg.We did Temple Square, visited the Air Force Museum, went to the park and had a picnic as a family, went to a farm and pet the animals… we tried to have some fun together!

To cut things short and save the technicalities for another post, I will just say this: between my friends on Facebook, the amazing Head Lactation Consultant, Ellen, my husband, and a generous sister in my branch, we were able to find a to spin my milk at home, using, of all things, our washing machine. And we were able to cut down the time he needed to be fat-free to 4 weeks instead of 6 (thanks to the persuasions of Ellen with the NP’s… because she knew I was not willing/emotionally capable of trying to pump those extra two weeks and take care of my other 3 kids and the house!). I also was able to build up quite the stockade of fat-free milk to take home with me and tide me over as long as possible. We ended up only needing to spin 3 days worth of milk, and we were done! And on May 12th, Benson was allowed to nurse again. Well, to try to nurse again, anyway! And he only had one hiccup and transitioned nicely back to nursing instead of the bottle. It was a marvelous day! With that, Benson was finally a “normal” baby.

The MOTHER of ALL updates!

Okay… so we’ve been slacking. BIG time. What can we say, other than we’ll do better? SO… I am just going to try to update as thoroughly and quickly for our sakes. You can choose to read it or not, as it will most likely be a long entry, but it is what it is. A year and a half or more, condensed into one entry. I imagine there will be a couple of expansions on a few topics, but those will follow later.

I will just start with January 2011 and go forward from there, month by month as I remember it (I may actually start liking Timeline on FB after all!!!)

2011

January

- Olivia turns 1
-The never-ending winter continues
-Aaron and I turn 31
-I finish Bill’s quilt made out of Cindy’s old shirts

 

February

-We took a quick trip to SLC as a family and spent time with Aaron’s dad and “Special” Eric Olsen

-My Grandparents and Aunt Kathy and Uncle Bob were in a car accident. My grandmother suffered very serious injuries
-Kade gets glasses. They last a week before they’re broken.
-Aaron becomes a certified EMT First Responder Ambulance and begins working part time for the Toole County Ambulance as a “Hobby”
-I slid off the road into a ditch, but we survived without nary a scratch. I did manage to break the CV joint, however…

March

-My Grandpa unexpectedly passed away, so the kids, Sharon Alfrey and I take an impromptu trip to Mesa for his funeral. While it was a sad reason to go down, it was wonderful to see all of my family and introduce them to Olivia. I also got to meet my brother’s wife Holly and their baby, Rockwell. We went to the Phoenix Zoo with Clarissa West, and got to see my Grandma, who was still in the hospital. She was not doing well.
-I do a sourdough display for our stake’s Emergency Preparedness Festival. It was fun doing all that baking!

April

-My Grandma joined my Grandpa 23 days after he passed away. This time I leave the boys in Shelby and Livvy and I fly to Arizona for her funeral. I go to the Easter Pageant at the Mesa Temple, something my Grandparents helped to start so many years ago.
-Kade turns 5. He requests a Volcano cake for the third year running!
-Olivia is absolutely obsessed with the boy’s underwear. She is frequently found with 10 or more pair around her arms and legs.

May

-We have fun with our bird feeder and are able to watch many different types of birds stop on their migratory routes.
-Kade learned how to ride his bike without training wheels
-Livvy’s hair is long enough for pig-tails

June

-We discover that we’re pregnant with baby-the-last! And have miscarriage fears. Thankfully, there was no miscarriage.
-We celebrate 6 years of happily wedded bliss
-Clarissa Layton West and her little guy came to visit
-A school bus full of kids gets toppled over by the wind. Aaron is able to help out transporting kids to the local hospital.
-I made aprons for the kiddos
-I tried making Dandelion Jelly– interesting!
-Aaron installs flashing lights on the Neon for the Ambulance.
-Aaron buys a grill!
-A deer visits our yard.

July

-Solomon and his buds and Natalie and Emma Boelter come and visit!
-I start baking for the Farmers Market
-I enter several things into the fair, and win Rookie of the Year :)
-We buy Ladybugs to help eat all the aphids. That was fun!
-Charlie turns 4 years old!

August

-I make Applebutter for the first time. And dilly beans. And dill pickles.
-Kade starts Kindergarten!
-We went camping
-Vacation in Seattle– and driving, OMSI, swimming, vomiting (Livvy only,) family reunion (walking the beach, gutting crabs, armory museum, fortress exploring), Exploring Port Townsend, Ferry, Space Needle, Pacific Science Center, Aquarium, Pike’s Market, a cruise, Monorail, EMP, traffic up hill in Seattle, Woodland Zoo, another family reunion, meeting friends, mansion living, good food, Silverwood today, camping tomorrow … full vacation!
-I try my very first Bountiful Baskets! And I start to train to open a new site in Shelby

September

-Olivia is obsessed with the Muppet’s Mahna-Mahna. We watch it on YouTube what seems like a million times!
-A lot of canning– peaches, apple sauce, and lots of jams and jellies
-I wrap up baking for Farmer’s Market
-Aaron is gone at Rooseville for a week
-A quick trip to SLC for the sealing of Eric and Trena Olsen, as well as an unexpected date night to see the UT symphony and MoTab!
-A Jogging/Bike stroller is added to the family’s accumulation of strollers.
-Half-way through pregnancy

October

-Canned tomatoes from our garden
-We eat all of the tiny tiny carrots from our garden for dinner in one meal. But they were good!
-Kade and Charlie are “Thing 1″ and “Thing 2″ for Halloween. Olivia is the 3rd child to be a dragon for a halloween party early in the month. THEN, she is Cindy-Lou Who. Aaron is “Dr. Seuss” (we aimed for the Grinch… but that didn’t work out so well) and I was Daisy-Head Mayzie!
-Bountiful Baskets site secured
-Aaron gets his yearly “Raise”
-Have 21 week Ultrasound, some concerns by the tech. Tech was concerned that she wasn’t getting a good view of baby’s heart

November

-Diagnosed with “Marginal Insertion of Umbilical cord” and get to schedule another Ultrasound. Dr. not concerned about heart.
-7 years of knowing Aaron!
-Aaron goes to San Fransisco for a week for work, and gets to try REAL ramen.
-Olivia becomes absolutely OBSESSED with “Harrold and the Purple Crayon”
-Bountiful Baskets starts in Shelby with a BANG!
-I make a “TURKEY” shaped pumpkin pie for the branch Thanksgiving feast!
-WE BUY A NEW-TO-US CAR! And it’s not a Subruban… An EVEN BIGGER Ford Excursion. VERY comfortable!
-Buy a Christmas Tree
-We buy a citrus juicer, to help get through the inexpensive boxes of citrus suddenly available because of Bountiful Baskets! HEAVENLY
-Homemade Bagels for the first time. WHY DID WE WAIT THIS LONG?

December

-Have second ultrasound for Baby-the-last, and everything looks OK. Tech spends a little more time on the heart again, but baby isn’t moving and cooperating, so he is unable to get a good view. BUT things look OK from his and our Doc’s stand point.
-We make Tangerine-Lime-Pineapple sauce with our abundance of fruits, and don’t feel guilty about it!
-Olivia moves to a big bed and out of the crib!
-Our first Christmas here at home alone. We are invited to a Christmas Eve party and a Christmas party by friends in the branch. Great Christmas!
-Learn that my parents WILL come for the birth of their last grandchild from us at the end of January! EXCITED!
-We make our own Meyer Lemon and Orange extract! Funness!

2012

January

-Olivia turns 2
-The seal on our toilet breaks, water floods the bathroom.
-Lots of Braxton Hicks with this pregnancy the last few weeks
-We get a new Dyson!
-My parents come from Kentucky to help with the kids while we go have Baby!
-Aaron and I both turn 32
-Benson Crain Shepherd is born on January 30th. And we discover that he has a Congenital Heart Defect called “Tetralogy of Fallot” and is quickly life-flighted to SLC’s Primary Children’s Medical Center. Aaron goes with him, while I remain in the hospital recovering from my c-section (more details later!)
-My parents are a HUGE blessing to have here, as I leave for SLC a day after I am released from the Hospital.

February

-Benson has a balloon valvuloplasy in his Pulmonary valve, giving him a little time to get bigger.
-I spend two weeks in SLC with Benson, and Aaron returns to Shelby to take care of the kids. The members of our branch were SUPER-HEROS with all of the help they so freely offered and gave.
-We remove the feeding tube for Benson, as he nurses for the first time.
-We are grateful for the love, prayers, help, and money that flowed in from everywhere to help for Benson
-Kids and dad do really well while I’m gone, but we’re all happy to have our family back together finally. Kids are THRILLED to meet their new baby brother!
-Get our first call from school. Some girls were teasing Kade, and he was terrified and crying.

March

-Benson keeps getting sick. I suspect he contracts the whooping cough, as he has violent coughing spells that last a minute or two, and he turns blue (scary!) but he never coughs at the doctors so we never do receive a diagnosis. However, when he starts coughing hard enough to throw-up, it’s a ticket to the hospital. Of course, then he stops coughing as much and we have a calm night at the hospital.
-WE GET THE INTERNET AT HOME!
-Weekly trips to GF for cardiology appointments
-Aaron leaves for a 5 day business trip.
-We schedule Benson’s heart repair for 2 1/2 months, much sooner than the 4-6 months we were initially told. While worried, we are also very relieved. His coughing really has us scared.
-UK wins the NCAA Basketball championship!

April

-Kade turns 6! We get him a nice, big bike, which he promptly declares he hates. (And continues to say that until he figures out how to stop on it.)
-We leave for 3 weeks in SLC as a family for Benson’s heart repair on April 11th and get to spend time with Aaron’s dad. We’re grateful to have a place to stay.
-Benson is admitted a day early as a precaution after his sedated echo when they discover his blood oxygen level drops to 40% after a coughing fit.
-Surgery goes well, and Benson suddenly looks like a pink baby, but has a complication from surgery– Chylothorax. No breastmilk for 4-6 weeks.
-We try to find fun things for the kids to do while we’re in SLC. Airforce Museum, Ikea, and a few other activities. Lots of parks.
-Aaron and I work to find ways to spin my milk and remove the fat for Benson
-Benson is out of the hospital in a record 7 days. We stay home, and Aaron works a little while he is in SLC, which will allow us to go to KY for Christmas!
-We go home!

May

-We order a half-case of lemons and make lemonade concentrate. Next year, at least one whole box, if not two!
-We figure out how to spin my milk at home for the last few days after I ran out of the frozen spun milk from SLC.
-Life returns to normal.
-Benson is weaned off of the bottle and resumes nursing with only one little hiccup! GLAD to be done with the milk-man, aka pump.
-Aaron works a LOT this month between the Ambulance and problems at the ports.
-Kade finishes his first year of school. Next year, we’ll have two in school.

June

-Aaron and I make strawberry jam together. FUN!
-Boys start Swim Team. Hoping they actually learn how to swim this year!
-Kade loses his first tooth!
-Charlie learns how to ride a two-wheeler bike!
-We buy our VERY FIRST COMPUTER as a married couple. It’s nice to have something work so fast!
-7th anniversary!
-Benson gets his first hair-cut
-I french-braid Olivia’s hair into twin braids. It looks great!
-I start cross-country baking with my Sister in Law Holly and we make Blueberry cream cheese braids
-I buy a bike!
-Kade goes to Summer Camp. Charlie was supposed to go too, but they said he was too young and wouldn’t let him go.
-We go camping at our favorite site and bump into our old ward as they’re having their ward campout. LOTS of fun!
-We FINALLY have Kade’s birthday party and I make his 4th volcano cake.
-Kids play on slip-and-slide and in the mud during an impromptu cook-out with friends

Congratulations if you made it all the way through!!! There will be a couple of detailed posts coming later, particularly about Benson! And hopefully we can keep this up better this time!