Well either Lydia wanted to stock up on some PICU specialty supplies or she just wanted to stop un and do a social visit with her old favorite PICU staff but she decided to take an ambulance ride to come see me at work today. I was at CMH south for the afternoon so Lydia came from the north, me from the south and Clay from the West to set in the middle back at Children’s Mercy. I personally think sometimes she just wants to think she’s an only child and get one on one mom and dad time to herself. She had a nasty desat episode and I received the call from Dr. gratnynthat she had instructed her day nurse to call 911 and have her transported to Mercy. She seems to have some ugly crud coming from her trach and coupled with ongoing drug withdrawals has made for a grumpy girl. I was quite happy to see her nice and pink upon arrival in the ER and everyone thought she was looking good once coming back to the PICU. So far she’s only on a bit more oxygen and doing okay so hopefully tomorrow we’ll get the boot to go back home and can just skip our regular appointment on Monday. They’re all impressed with how low her drug doses are: 2mg of Ativan and methadone would only sedate and not kill the average size adult. We’ve come a long way from the 22mg she started on back in October. They also keep commenting on how big she’s gotten. My little former peanut is becoming quite the full figured woman at a stocky 25 pounds. Yes, she and momma could both stand to do some good abdominal workouts, one of our ongoing goals for the year….
Well 2012 has started and I’ve already shed 9 inches of my former self. No, it wasn’t any Hollywood diet (although that would be nice) but I finally shed the Crystal Gale hairstyle that had grown to the middle section of my body formerly known as my waist. It wasn’t really a labor of love as it was much more a side effect of neglect. I was one step away from wearing Sponge Bob pajama pants to Wal Mart and Lydia’s doctors appointments so I decided it was time to class myself up a bit and shed some inches. Too bad more inches can’t be shed that quickly…
Anyway, here’s the before.
The post pigtail cut with 2 piggies ready to be sent off to Beautiful Lengths (they donate their wigs for free where I’ve heard locks of Love charges)
And the aftermath, curtesy of a cute little stylist named Ryan. I can say how cute he was since I’m pretty sure Minivan multiples moms aren’t his type.
Clay and I rocked in the new year with just enough wakefulness to hear Dick Clark slur his way down to the ball dropping and then it was back to bed. Here’s the first attempt of coordinating triplet photography for the new year.
Also taking advantage of some nice January global warming. (Sorry polar bears…)
While I’d like to resolute that there will be less of me and what is left will be chiseled and can run a 5k and there will be more in the savings and I will be more spiritual and fulfilled and blah, blah blah, I’m really only rooting for survival of all Johnstons into
2013 and showing those Mayans what we’re made of. Also really hoping to have 2 little birds out of diapers (minding better would be a nice bonus too). After watching Elmo’s Potty and getting new stylish skivvies from Santa, Ava actually produced some tinkle on her potty. Wyatt did too: on the kitchen floor, my leg and in a Tupperware toy box filled with small plastic food. Well we’ve got 11 months before I give up and just throw newspapers around the house.
Lydia had her first long and lengthy check up of the year with only 5 pitstops to lab, cardiology, special care clinic, hanger orthotics and interventional radiology. They tried to threaten her with admission after giving us a wake up scare at 6am and needing an emergent trach change, more oxygen and some fluids but she rallied by mid morning and was smiling and charming the staff. Her echo of her heart looks okay still and she finally got her nasty stinky gJ tube replaced and got the clearance to head back home. All in all, I’ll call the day a success although her night nurse will be getting some lessons in hooking up an ambu bag and she wasn’t even close to actually giving Lydia any support. Sigh. Im back to work 3 days a week, Clay resumes classes next week and the grandma brigade will be back in I’ll swing. And the new year begins….
Seasons greetings, happy holidays, happy Chanukah, Kwanza, Festivus or merry CHRISTmas! Hope that covers everyone. I figure the blog has kept everyone fairly well updated from our past year but for those non web-savvy folks, here’s a glimpse of 2011–and I’ll try to not give all the medical gore again.
Wyatt and Ava started the year crawling and babbling away. They soon started walking and are now fully two-year-olds: sweet one minute, and destructive gremlins the next. They like to give us daily tests of our parenting skills and see just how far they can attempt to push our buttons. I may only be kidding myself, but I still think Clay and I are still in charge most days.
Wyatt is becoming quite the man of the house and very helpful when it comes to organizing and fixing as most 2 year olds are. He has an aptitude for singing the ABCs and drumming on any possible surface including but not limited to the heads of his sisters or any possible item that is not made for drum sticks. He may be busking on a street corner soon.
Ava has a particular flair for the dramatic arts and already shows great leadership skills that I’m sure will either land her as a surgeon, CEO or academy award winning actress. She’s proving to be quite the creative and artistic genius as well with her attempts to turn most household surfaces into yet another master piece. Her cleft palate was repaired in February and she no longer is able to do the fun party trick of having different foods come out of each nostril. Plus she can pronounce consonants, so that’s a bonus too.
Lydia finally made it home on November 16, only 2 years and 4 days after her birth. Its quite nice to not drive to Children’s Mercy daily, and especially comforting knowing there will be no more flights to Boston. She remains on narcotic levels high enough to make Charlie Sheen look like an amateur, but we’ve finally weaned her levels down to the single digits. As long as we keep her close to an electrical outlet to keep her medical gear running, all is well for now. She seems very happy, and makes very small baby steps of progress. We’re hoping to get her unplugged from some of her accessories in the coming year. We’re happy to report one medical gain: her eyes seemed to have uncrossed on their own, so we have that going for us, which is nice.
Clay continues to enrich the minds of young business students at Benedictine College and I still save lives at Children’s Mercy in the plastic surgery department. I’m on a brief stint as a stay at home mom and have had plenty of time to keep the house clean and tidy, the laundry consistently clean and put away all while making fresh organic dinners for our family and doing daily educational crafts and projects with the children. I am able to have Clay’s martini prepared and slippers out after his long hard day at work. This is all while I keep myself stylish in the latest fashionable dress and heels. With my daily workouts, I can barely keep these size 2 pieces on! At this time we are not planning on summering again in our favorite New England vacation spot, but might just attempt a brief stay in a cozy country cottage in the northern woods of Missouri.
On a more serious note, we do want to say a sincere thank you to everyone who has gifted us so generously during such a trying and exciting year. Your gifts of babysitting, meals, airline miles, travel funds, sounding boards, cards, Facebook comments, words of encouragement, thoughts and prayers have been absolutely essential to our survival and sanity. We are blessed because you are in our lives.
We happily welcome 2012 and the possible last year of all our existence per the Mayans. Good riddance 2011. 2012, bring it on!
I think the most frequently asked question for everyone during this week is “Are you ready for Christmas?” We’re as ready as we’ll ever be. The tree is up with at least a dozen ornaments that survived the elves not so gentle touch. We even have tree #2 up so it’s going to be hard to keep up with the Johnstons this year. It’s the 12 inch tree from Boston that stalled me in security while they made sure I wasn’t transporting a bomb; but none the less, Lydia’s room has her own bit of holiday flair.
In this month I’ve been off, we’ve made our own prune based Vegan gingerbread men with large amounts of festive sprinkles. If I didn’t tell you they were healthy you’d never know they lacked butter and sugar. Feel free to place your orders for your next holiday party.
Here’s the recipe in case you’re tempted as well:
9 prunes
1/4 cup extra virgin coconut oil, melted (such as Barlean’s)
1/4 cup plus 3 tablespoons molasses
1/3 cup plus 1 tablespoon water
1 heaping teaspoon freshly grated ginger
2 cups white whole wheat flour (such as King Arthur Flour)
1/4 teaspoon baking soda
1 teaspoon cinnamon
1/4 teaspoon allspice
1/4 teaspoon nutmeg
1/4 teaspoon ground cloves
1/4 sea salt
Preheat oven to 350 degrees. Lightly oil two heavy-duty baking sheets with extra virgin coconut oil.
Place the prunes in a medium sized microwave-safe bowl and add 1 cup of water. Place the prunes in the microwave and microwave on high for 2 minutes. Remove prunes from microwave and let sit 5 minutes. Drain water and set prunes aside.
Place the melted oil, molasses, water, freshly grated ginger and softened prunes in a high speed blender. Process on high for 1 minute, or until all ingredients are well blended.
In a large mixing bowl, mix together the flour, baking soda, cinnamon, allspice, nutmeg, cloves, and sea salt. Add the wet ingredients in with the dry and knead with your hands to thoroughly combine (the dough will be thick and heavy.)
Roll out the dough on lightly floured waxed paper or a nonstick mat. Cut gingerbread people with a floured cutter. Place cookie cutter on rolled dough and press down evenly. Pick up shapes with a metal spatula and transfer to baking sheets. Continue to knead dough scraps to roll and cut more cookies.
Bake cookies for 7 to 9 minutes. Remove cookies from oven and set on a wire rack to cool
Okay here’s how they actually turned out. The first picture was how I envisioned them. Wyatt and Ava decided to go for more of an abstract extreme sprinkle look.
They thought it was for Nana’s birthday and felt compelled to sing to Nana as we decorated. Sprinkles=birthday for someone.
We made an attempt to see Santa which was a grave disappointment as I would’ve had better luck getting Santa to hold the cats. They were all about the hype talking about how Santa says “Ho, Ho, Ho” and they were going to ask for a choo choo. Then the big jolly guy who I’m pretty sure was the real deal terrified them so much they couldn’t even look at him or give him a high five.
After the tears had dried, this was as close as we could get.
Wyatt was most excited about his double doughnut breakfast.
We also ventured down to see Rudy the Christmas train who shut off his Christmas lights at 7pm, exactly 1 minute after we had fed and loaded Wyatt, Ava and niece Amelia into the car to see him. So we ran around the Christmas tree at Union Station and drove by the Crown Center lights.
Ava talking to her manager before seeing the lights.
In keeping with the gift making spirit, we’ve made almond brittle that didn’t break and stuck to the foil, bubble bath that wouldn’t bubble and shampoo that barely lathered and really homely ginger prune men. If you don’t get a present, remember you were probably thought of and really it’s the thought that counts. As Clay and I have become professional disappointmentologists this past year, we’ve learned to keep all expectations pretty low. Fortunately 2 year olds just applaud the effort and appreciate the attempt of a Hallmark turned Dollar Store Christmas.
Lydia has been doing well at home and we finally have a 2 week clearance from bringing her back to Children’s Mercy. She has had a pesky GJ tube infection but we were able to treat it at home without IV antibiotics. Otherwise, she’s still weaning from her drugs and has been more alert and playful. We even brought her to the annual Parkville Seymour Holiday Open House.
Another successful attempt at capturing all the cousins in their holiday best.
And some random pics from the month. “The best way to spread Christmas cheer is to dress real loud for all to hear.”
just in case you’re wondering who Wyatt’s favorite Muppet is.
sisterly love
decked out for another CMH outing
some holiday eyeliner to look extra fancy
this year Santa’s traveling by horse
a summary of attempting to photograph 3 festive toddlers
It’s December 1 so guess it’s finally time to toss out my Halloween pumpkins (which have held up remarkably well) and bring in some yuletide spirit. Beware of the 2 Christmas burglars who may be sneaking into your home to steal cookies.
What do Winston Churchill, Mark Twain and Clay Johnston all have in common? Besides all being known for some historically witty quotes, all share the same birthday on November 30. After a long day of appointments at Children’s Mercy with Lydia, we all had some take-out Jack’s Stack BBQ and of course Wyatt and Ava’s favorite food – birthday cake. With all the November birthday’s they’re going to think birthday cake is a weekly occurrence.
Lydia spiffied up with her newest and better fitting fashionable helmet ready for outing #2.
Okay I’m far too lazy and my house looks too much like it has the stomach flu to individually post pictures, so here’s the link for all the birthday party/ Lydia Welcome home party pictures.
Big thanks to Aunt Holly for bringing her camera and great photography skills to the event as capturing the trio in one frame is a very difficult task indeed. Ava and Wyatt look so angelic in some of those pictures, you’d never know they just turned 2.
Also big, big thanks to Sherry’s Cake Magic for providing the most beautiful toddler cake ever. I had contacted an organization called Icing Smiles who select a local baker who will donate a cake to a critically ill child. We discovered them through our friend Gracen when he spent his second birthday in the hospital and they contacted a baker for Lydia’s birthday. If you’re in need of a fabulous cake, please contact Sherry. It was as delicious as it was impressive. Wyatt and Ava loved the crispy treat trains the most and would take a bits, drive them on the table and then take another bite. I think they’re still recovering from their sugar high. If you’re looking for places to donate this holiday season or anytime during the year, this is a great organization that relies solely on volunteers. All nonprofits can use financial donations but also if you’re in the mood for baking, they can always use bakers (both fancy and just tasty).
We continue to enjoy having our girl home. She’s been rather sleepy this weekend and is having some drug withdrawal issues which will be frequent occurrences for the next few months as we ever so slowly wean her ativan and methadone. But all in all, a good weekend with much to be thankful for!
Our littlest Tiger fan just wasn’t as stoked about the border war victory this year.
Tiger cousins in the mix. Thanks to Grandma Wenda for adding some Mizzou flare to Ava’s overalls. I’m going to try to get her started in the team spirit fashion wear but Jayhawk styles will cost double.
It was a good day: small gathering with Nana Pam and Papa Ed and the 3 birds, one little trach decannulation incident that Lydia was smiling much sooner than we were and very thankful we made it all day without even having a nurse. Plus pretty thankful we have a good night nurse tonight!
Friday we welcomed back Wyatt and Ava from their week in Trenton. While they seemed excited to see Lydia, Wyatt was a bit disappointed the drum set was no longer up in her room. He failed to appreciate the new princess lair and kept asking for drums. Friday was a bit of a stressful day at home as I had to call and “fire” our first nurse for taking a smoking break and then to find out later in the day she had overdosed Lydia on Ativan. Fortunately, the only ill effect was she was sleepy all day. Still, the home nursing thing is somewhat stressful. The rest of our nurses so far have been great. I never dreamed I’d have to have a no smoking policy to take care of my child on a ventilator and oxygen who has been in the hospital for 2 years, but guess I’ll be doing a more thorough Q&A session before they come through the door.
Saturday we had Birthday Party#2/ Welcome Home Lydia party. If a party’s success is measured by the amount of frosting on the kids and mess in the house, than it was a hit. We were lucky enough to have beautiful weather and kick most of the kids outside for a bit. We had a cake provided by http://sherriescakemagic.com/ and it was quite a masterpiece with an ABC train theme. The kids definitely approved and I’m going to have to ease them into the fact that birthday cake is not a weekly dietary staple. Birthday pictures to follow as Aunt Holly volunteered her mad photo skills for the event.
We also took Lydia outside for the very first time ever. It was a tad windy and she wasn’t quite as enthused about the idea as we were.
I honor of world prematurity day today, I’d like to extend a huge thank you to all the doctors and nurses who kept our babies alive and helped them all celebrate their second birthday. I will forever be grateful to my perinatologists at St. Luke’s who were able to stop my labor at 27 weeks and helped the babies cook until they reached 32 weeks. Even at that point they were 2 months early and had it not been for the excellent care they received as they were delivered and then at St. Luke’s and Children’s Mercy NICU, they may have had a very different outcome. We can never thank all our wonderful NICU nurses either who work long days saving the tiniest and most precious patients of all and provide the love and care our babies need for 24 hours a day until they are big and strong enough to face the world.
Hard to believe it’s been 2 years since we welcomed these little babies into our lives. What a birthday they had. Note: photos may not be for the faint of heart.
Baby A: Wyatt. Our beef cake at 4lbs 6 oz and 16.5 inches. He had an Apgar of 1 initially and had to be resuscitated with a breathing tube and brief chest compressions (10 is a pink screaming wiggling baby, 0 is a pale or blue baby with no heart rate, not breathing and limp) Wyatt had a slow heart rate and that was it. The excellent team of doctors and nurses revived our little man and he was bright eyed and breathing tube free in a few days. After 6 weeks in the NICU, he was home just in time for Christmas 2009. He’s now our 23 pound, ABC singing and drumming little charmer.
His very first picture.
Hanging out in his incubator or as we referred to it as his little Snoopy house.
Baby B: Ava weight 3lbs, 10 oz. 16 inches. She had an Apgar of 4 and was my only one to make a quiet little squeak once entering the world. She was able to have her breathing tube removed after a few days as well. After 7 weeks in the NICU, she was able to come home with an apnea monitor on New Year’s Eve. She surprised us with a cleft palate and had a longer stay due to reflux and learning to drink from her special bottle. Ava is also our 23 pounder chattering and singing toddler full of sugar and spice and most things nice, although I do believe she got the amount of spice for 2 little girls.
Baby C: Lydia Grace, our little fighter who continues to be our miracle girl, 3lbs 7 ounces, 16 inches. I saw her dancing legs kicking as they whisked her away to her own team designated for Baby C. She too was given an Apgar of 1 and they had a very difficult time being able to get a breathing tube in her. After discovering her likely esophageal atresia, she was taken to Children’s Mercy that afternoon and had her first surgery on day of life 1 for a stomach perforation that happened when they were resuscitating her. 734 days, 2 hospitals, 5 ICU’s and 23 surgeries later, she’s now home in time for a belated birthday celebration and Thanksgiving. While her life and surgical treatments have not gone as planned or hoped, we are blessed to have our little surprise Baby C in our lives. She makes us smile and still talk in high pitched cooing voices. I think Lydia got double the sugar of two little girls and only a small dash of spice. Must have been another strange identical twin splitting thing.
The first and only picture of her without any surgical scars.
Lydia with her new snuggle buddy Sugar Bear, back when her preemie size diapers went up to her arm pits.
After 770 days of having someone in our family living in a hospital counting my brief 5 week stint on October 8, 2009, Lydia finally got to come home yesterday November 16, 2011. It is not the quite the glorious homecoming we had envisioned before heading to Boston, but a homecoming none the less and considering her awful and critically ill summer, a huge accomplishment and miracle for us all. It’s so wonderful to just see and be with her at any moment we want!
Clay and I survived our 48 hour stay at Children’s Mercy Sunday-Tuesday and they fortunately deemed our care satisfactory enough to send her home with us. It was probably as close to a 2 nights stay in a bed and breakfast as we’ll be getting anytime soon. We were fortunate enough to be able to get 24 hour nursing for at least the first 2 weeks and now 24 hours into her moving home, all is going well so far. She really seems happy here and has been kicking, smiling and playing non stop. She actually didn’t sleep much at all last night and just wanted to play she’ll probably be doing a long crash session soon. It’s quite calm and peaceful in the house with just Clay, Lydia and I and Mt. Laundry is almost tackled for a couple days at least. Wyatt and Ava have hopefully been behaving (minus playing in a vaseline jar at Nana Pam’s house) for the week and we’re anxious to see them tomorrow.
Some pics of the week (one of the best weeks we’ve had in a long time!)
Day 1 of Clay and my B&B stay at Mercy: Looking nice in peach and enjoying her new hat made by her favorite weekend nurse Sarah.
Day 2: After an hour of buffing and primping, our girl is ready to enjoy the day. Good thing we have nurses to help out with keeping our diva clean and fashionable.
Day 3: After 48 hours of lock down we all leave a bit on the tired side. On a positive note, Clay and I are still on speaking terms after 2 nights on a recliner and uncomfortable cot and Lydia still looks pretty darn cute.
November 16: Ready to bust out of this joint.
Lydia’s first set of wheels. Yep, she’ll get one at 16 too. Wyatt and Ava can ride if she lets them.
The Princess’s Room:
I made these and thought they came out pretty well. In the abundance of free time I’m sure I’ll have, I’m thinking of making some for others perhaps on an etsy shop. Email if you’d like to place an order. Christmas 2012 deadline now.
In a fleeting moment of craftiness last week, I also made this print after copying it from pinterest (my latest internet time killer). It says, “Promise you’ll always remember: You’re braver than you believe, stronger than you seem, and smarter than you think” from Christopher Robin to Winnie the Pooh. A good lesson for all my birds to know.
Big thanks to PaPa Ed for refinishing an old dresser that my great Aunt Marian made for my dad about 50+ years ago. It went from a dark brown to pale pink with bird knobs. I also talked him into refinishing an old night stand from our St. Joe house that I had grand plans of doing before we moved to KC 6 years ago. It’s perfect as a suction and O2 monitor station.
We still have some more finishing touches and keep finding more and more need for medical supply storage and are still working on improving our organizational skills. It’s a work in progress, but so far Lydia approves.
