Big Days

Some days you wake up and everything is the same and by the time you go to sleep nothing is the same. Those are the Big Days. A year ago today was one of those Big Days for us, the biggest of our Big Days, but to get there we have to backtrack just a little…

On June 26th, 2015, Josephine had her first pediatrician appointment. I was nervous going into it because we had realized in the week or two prior that she was not gaining weight like she should be. We were exclusively breastfeeding, something I felt strongly about and really wanted to be successful at, and I was afraid that we would have to start supplementing with formula because of her weight. The day came and she was only in the 2% for weight, but the pediatrician said to continue doing what we were doing (breastfeeding with the shield and giving pumped milk a few times a day). Then she listened to her heart and heard a murmur. She stopped listening to tell us and said, “I think it may just be musical.” and then she listened again, more intently, and said, “Well, with her feeding and growth issues, I’m going to order an echo.” We left, more distracted by the first round of shots and needing to give her Tylenol (her first non-breastmilk ingestion ever!) than by the murmur, but it was there, lurking. I googled heart murmurs, of course, and found this page: I read the symptoms to Josh, “Fatigue or weakness, yes. Poor appetite, no…more like perma-nursing. Sweating while breastfeeding, yes. Fast breathing, yes. Sucking bursts and long rests, yes. Weak suck, yes. Uncoordinated sucking and breathing, yes. Bluish tint, no. Can feel heartbeat just by holding, yes. Heart murmur, yes. Poor weight gain, yes.” That is a lot of yeses. I think we might have known knew then. But we tried not to think about it too much while waiting for her echo. Maybe we were reading into things too much. Maybe it was nothing.


On June 30th, 2015, Josephine had her echocardiogram. I remember nursing her that morning and pumping while watching Gilmore Girls with N. I remember picking out her tiny little t-shirt with the black bows on it and a pair of black pants because I knew they’d need to take her shirt off for the echo. I picked Josh up from work and we headed to Clear Lake. Josie was a good girl for the test, they had one of those spinning glow lights you get at Disney on Ice or the circus that she really liked to look at. We gave her some pumped milk in a bottle to help her stay still. After it was done, the nurse came in to try and get her blood pressure on each arm and leg, but couldn’t. (The first of many failed blood pressure attempts on this kid.) I think she got two and we called it good enough. Everyone was very nice to us and very sweet with Jo. Maybe they were too sweet, the burden of knowledge being what it is. The smiling tech told us, “You guys are all done. If your pediatrician doesn’t call you within 2 hours, call us.” I’ve been through many, many, many tests with K and no one has ever said this. I knew then. It was a rock in my gut and a hummingbird in my chest. I told Josh, “I don’t think that is a good sign.” We headed back towards his work and stopped at Sonic for lunch. Right as we ordered, my cell phone rang. It was our pediatrician. She said something like, “Hey. Josephine has a large VSD with significant shunting, you guys need to go to the ER at TCH to be admitted to cardiology.” I heard the part about going to the ER and understood that, the rest was a little fuzzy. I think I said, “We just ordered food, can we wait for it to get to the car? Do we have time to go by the house and grab a few things?” She said yes. I think I texted Laura or maybe I called? They were at J’s birthday lunch. I called my mom. I think I called N to have him gather some things for us. I texted Paula at some point, she had K at a movie with M. I’m pretty sure we talked to Josh’s mom. It’s all overshadowed by the rocks and the hummingbirds that had multiplied at the sound of the pediatrician’s voice. I forced myself to eat a little on the drive back, but once that adrenaline is dumping, it is hard to do. We packed up some things at home, talked to N, I texted the pediatrician, “I know we need to go to the ER, but I can’t remember what else you said.” She said, “She has a VSD with significant shunting. They didn’t have a cardiologist at Clear Lake, so she needs to go to the ER because it is the fastest way for her to be seen and she needs to be seen right away. They may keep you, but they may not.” We made hasty arrangements for the kids, grabbed stuff in case we had to stay, and headed to the hospital.


We were taken back pretty quickly from triage, but I barely remember that. We were put in a room on the side that used to be call Fast Track. It was a room I’d cleaned many times as a volunteer, tucking the sheets in on that very bed. I had fetched ice water for parents and brought crayons or toys to the kids. It was the room that N got stitches in once, I think. I can’t remember if we were ever in there with K. Regardless of all the things that had happened there before, it was a different room now. While we waited, I nursed Jo in that little bed that was the same and somehow different now. It was one of the last times I nursed her, but I didn’t know that then.* Someone came and took us to imaging, something I’d done loads of times as a volunteer, and she had her first x-ray. It took them forever to come and get us afterwards and it made me crazy because I knew exactly how to walk us back to our room, but we still had to sit there and wait. Then she her first EKG and she flirted with the tech while he adorned her tiny chest with stickers and cords. She got her first (unsuccessful) non-immunization needle sticks as a nurse tried to start an IV and get labs. At some point, cardiology came to see us and they explained her defect, why nursing was such a full time job for her and why she wasn’t growing in spite of it, why she didn’t turn blue like most people would expect, and the fact that she was in congestive heart failure already and she would need open heart surgery. Maybe this stay, but hopefully not. Hopefully surgery would happen at 6 months old, if we could get her to grow. We were being admitted, but the cardiology floor was full. We’d have to go to 10 instead (which ended up being kind of a mess). At some point, maybe in that room, maybe on the floor, they told me that Josephine shouldn’t nurse anymore. It was too much work for her heart. The thing I had been most afraid of at the pediatrician’s visit had happened, but it barely mattered anymore. I just wanted my baby to live, I’d feed her whatever and however I had to to make that happen. There had been so many little things to worry about on June 29th and so many bigger things to worry about from June 30th on, but it all changed in an instant. It all became a single, silent breath of prayer, “Please, just let me keep her.” in and out, over and over, through heart failure and failure to thrive and open heart surgery and life-threatening allergies and so many sleepless nights and so many days that we never would have imagined before our Big Day. “Please just let us keep her.” was our heartbeat. And here we are, a year later, overflowing with gratefulness that she has been ours for 446 days and counting.




I first heard this song shortly after Josie’s diagnosis and every time I hear it, I think of these moments. 

(*Side note: I tried to keep up comfort nursing for a short while, but she just wouldn’t grow and I couldn’t let her keep burning extra calories. I tried to get her to nurse after her surgery when it was safe to do so, but she wasn’t interested anymore. I do miss nursing very much and will always be sad that we lost our breastfeeding relationship in the midst of all of this, but we did what we needed to do to give her the best shot at thriving and I can’t regret that. )

Links to other heart-related posts:

Life is…figuring out what to eat (6/12-6/18)!

I mentioned our fun new food allergy restrictions in my last post. I’m going to start sharing some of the things we eat, in hopes that it helps other people who are in similar situations. I find that so many allergy-friendly recipes are super complicated or weird fancy food that we have no interest in. Additionally, we are generally short on time and fairly picky, so most of the things we eat are fairly simple. Here’s what is on this week’s agenda:

BLT Stuffed Avocado, original recipe from The Pioneer Woman:

**To make this gluten-free, dairy-free, egg-free, and nut-free, we skip the bread cubes/croutons and use Vegenaise in lieu of mayo. It’s delicious anyway!

  • 4 strips Thick Cut Bacon
  • 1 cup Fresh Bread Cubes (Sourdough, Or Other Crusty Bread)
  • 1 cup Chopped Tomatoes
  • 1 cup Loosely Packed Chopped Romaine Lettuce
  • 2 Tablespoons Mayonnaise
  • 3 To 4 Large Ripe Avocados
  • Salt And Pepper, to taste

In a skillet over medium heat, cook the bacon strips for about 5 minutes on each side until crispy. Remove the bacon to a paper towel lined plate, then add the bread cubes to the bacon fat. Cook for about 5 minutes until the bread cubes are golden brown and crispy.

Chop the crispy bacon into small pieces, then place in a bowl with the croutons, tomatoes, and romaine. Stir to coat with the mayonnaise, and season to taste with salt and pepper.

Cut the avocados in half, and remove the pits. Sprinkle the tops with salt. Place spoonfuls of the BLT mixture into each avocado, then serve. Enjoy!

**To make this GR/DF/EF/NF, we just have to buy safe Italian dressing mix!
-1.5 pounds large shrimp, peeled and deveined
-1 package Italian dressing mix
-1/4 cup vegetable oil
-1/2 teaspoon paprika
-1/2 teaspoon garlic powder
-1/4 teaspoon cayenne pepper
-Pinch of salt

Add shrimp to a large zip-top bag or lidded container. Whisk together dressing mix (unprepared), oil, paprika, garlic powder, cayenne pepper and salt until well combined then add to shrimp. Toss to coat shrimp then refrigerate for 1-4 hours.Line a baking sheet with aluminum foil. Drain shrimp from dressing mixture then place shrimp in a single layer on baking sheet. Broil shrimp on top rack of oven for 5-7 minutes or until pink and cooked through, flipping shrimp once during cooking.

Serve hot or at room temperature with cocktail sauce if desired.

Makes 10-12 appetizer-sized servings.

Chicken Tacos, no real recipe.
-1/2 bottle of Allegro marinade
-2-3 chicken breasts (frozen is fine)
-safe shells/chips/tostadas/tortillas of your choice (we prefer soft tacos for this)
-taco fixings of your choice (we like lettuce/tomato/avocado/safe refried beans/salsa)
Marinate chicken in Allegro either overnight or from the time you pull it out to defrost the day of. We cook it on our Foreman grill. Then make the tacos to your liking and enjoy!

Easy Crock Pot Chicken and Black Bean Salad, original recipe from SkinnyTaste.

**To make this GF/DF/EF/NF, we will buy safe taco seasoning, skip the cheese, and sub in the Vegan Ranch recipe I will post below.

  • 2 (16 oz total) skinless, boneless chicken breasts
  • 1 tablespoon reduced sodium taco seasoning
  • 1/2 teaspoon cumin
  • 1 cup canned black beans, rinsed
  • 1 cup chunky salsa

For the Salad:

Place the chicken in the slow cooker and season with taco seasoning and cumin. Pour the beans over the chicken and top with salsa. Cover and cook on LOW for 4 hours, or until the chicken is tender and easily shreds with 2 forks. Shred the chicken and combine with the beans and sauce, keep warm until ready to eat. Makes 3 1/2 cups. To make the salad, place 1 1/2 cups lettuce on each plate, top with 3/4 cup chicken and bean mixture, 1 tbsp cheese and 2 tablespoons zesty avocado buttermilk dressing.

Easy Vegan Ranch Dressing, original recipe from And Love It Too:

1 c Veganaise or Homemade Vegan Mayonnaise (I prefer the almond based recipe found here).

-½ c Coconut Cream (see note below)
-½ tsp Dried Chives
-½ tsp Dried Parsley
-½ tsp Dried Dill Weed
-¼ tsp Garlic Powder
-¼ tsp Onion Powder
-Salt and Pepper to taste

In large mixing bowl, mix together mayonnaise, coconut cream and spices.  Refrigerate for at least 1 hour before serving.  Store remaining dressing in refrigerator for up to 3 weeks. Makes 1 ½ c.

To obtain coconut cream, simply refrigerate 1 can of full-fat canned Thai Kitchen Unsweetened Coconut Milk for at least 24 hours.  Coconut cream will separate and solidify on top of coconut water.  Scrape cream from top and measure ½ c for this recipe.

Stuffed Jalapenos, no real recipe:

-1 lb jalapenos (1/2 lb per person)
-GoVeggie vegan cream cheese
-1/2 lb bacon (and/or sausage or whatever you’d like to stuff with)

Cook and crumble bacon, drain fat. Add to vegan cream cheese (whole container). Cut tops off jalapenos, cut slit down 1 side of jalapeno, spread to open, and scoop out seeds/inners. Fill with mixture. Bake at 350 degrees until cooked to your liking, approximately 20 minutes.


We also have two carryover meals from last week’s planning; Salisbury Steak/Mashed Potatoes and  Burgers. I don’t have recipes for either, as Josh tends to wing it, but I will say that we use a flax egg (1 tbsp ground flax+ 3 tbsp warm water, then let set in fridge for 10 minutes) in lieu of egg and have been using Schar Crispbread in lieu of bread in such things. Mashed potatoes can go one of two ways, safe instant potatoes with soy milk and SmartBalance, or this delicious recipe: Those are legitimately the best mashed potatoes I’ve ever had, allergies or no!

And that’s that! I hope it was helpful!

Life is…full.

Long time, no write! The past year or so has been so incredibly full and I have so many things to say and process and yet, the time and energy to devote to such things has been impossibly hard to come by. However, some days Josie takes a decent nap so I hope that I can take advantage of that once a week or so and get some writing done! I have some specific things I would very much like to write about, but I would also just like to get back into the habit of writing about life. So, here’s hoping. But first, I have some catching up to do since my last post…in 2015! Gasp!



Oh, our sweet Josie girl. She has healed up so nicely from her open heart surgery and is growing well! Unfortunately in March she was diagnosed with several life-threatening allergies; dairy, eggs, and dogs, and nuts were borderline and will be retested in August. Her allergies are such that we cannot have any of those items OR any items CONTAINING those items in the house. Our dogs are now garage/outside dogs. Our meals are now dairy/egg/nut-free and gluten-free friendly (for me). If we eat contraband food outside of the house, we have to scrub our hands and face before touching her. Josie can’t go to our friends’ or families’ homes anymore because of their pets and their kitchens. Several of handful of foods that K will eat can no longer be in the house. It has been a major, major change in our lives. However, no one has starved to death yet AND Josie has had no reactions since we figured out her allergens and made life safe for her. Additionally, as Josie has been eating more solid foods, we’ve noticed she seems to have trouble swallowing. She frequently coughs during and after meals and can’t seem to clear things. In addition to a limited diet because of allergies, we also have to be very careful about what we let her try due to swallowing problems. It is concerning and she’ll be having a swallow study done soon. Since I stopped pumping (HALLELUJAH! We made it a YEAR which I am so proud of, and I am SO SUPER GLAD to be done. Pumping, y’all. It sucks.), Josie has transitioned to soy formula and seems to be doing well on it. Her sleep patterns improved after the switch, but she still is not a super sleeper. She is such a little joy, in spite of it all. She knows and uses upwards of 30 signs. She loves to read books, especially Goodnight Moon, Peekaboo, Big Fish Little Fish, and Where is Baby’s Belly Button (over and over and over and over). She’s crazy about Signing Time and the Wiggles. She isn’t walking yet, which Josh is DYING for, but I’m enjoying the extra baby time. It goes so quickly! She’s a cuddler. She loves FISH and DOGS (everything that is furry and has 4 legs is a dog, it leads to many arguments in our house) and FLOWERS and BABIES. Her favorite food is soy yogurt. Her favorite thing to do at the park is swing. She loves riding in her tricycle. She’s obsessed with brushing her teeth. She’s getting her pre-molars (oh Lord, be merciful!). She has changed our lives in unimaginable ways, but I can’t imagine not knowing this awesome little person we were blessed with.




K is doing really, really well. We have lucked out that her health has been so stable as we deal with Josie’s craziness. I have about a million neglected, overdue appointments that need to be scheduled for this girl, most urgently ophthalmology and dentist, but she is doing so well that we aren’t in TOO big of a hurry to hop back on that hamster wheel. She has grown up so much this year, too. She’s much more responsible about managing her energy  levels and health when on her own and because of that, she is currently going to day camp with her theater group all on her own…no nurse, no nothing! She is even in the teen group because a friend asked if she could move up for the summer. It makes her feel REALLY cool. They are doing the songs from Grease for their summer show and she is stoked. She made it through her Spring show week without getting sick, which has never happened. She ALWAYS gets sick and exhausted during show week. She had a solo in “Don’t Stop Believin'” and nailed it. We stumbled through her 5th grade year of homeschool pretty successfully, especially considering what our life was like all year, and she is doing summer math to bolster some of her weak areas, much to her disdain. A lot of her struggles lately have been in the REMEMBERING things and PAYING ATTENTION categories, so we are working to help with with that. This week, we are testing out alarms on her iPad when things need to be done (like start tube feed, brush teeth, do math, get dressed, ect.). It’s a work in progress. In her free time, she loves to FaceTime/Skype with friends and play online games with them, as well as watch endless YouTube videos about Minecraft and other games. She is the best big sister and Josie loves her to pieces. I’m so very thankful that our girl is doing so fantastically as of late!



N is finished with junior high and is already going to the high school daily for summer band! I cannot believe he is so big. I feel like I was just that age! Really! He really cleaned up at the end of the year awards at school: Outstanding Band Student (given only to 2), Outstanding Language Arts Student (given only to 2), PSAT Scholar (over 1000 score), Perfect Attendance, Academic Excellence, Reading STAAR Excellence, Lone Star Reading Award, and Algebra 1 EOC Excellence. It was so fun to sit and watch him and his group of friends get called up for academic and fine arts awards, again and again. They came pretty close to sweeping it! But once we got to the sports section, I didn’t recognize any names. Haha! We are not a sporty crew. He also was inducted into NJHS and received a summer camp scholarship for scouts and a very special recognition award for being such a good example and leader and teacher for the younger boys. He also got a first division in his saxophone ensemble for UIL! So proud of this young man! I was always a little freaked out of the teen years (babies are more my jam), but it has been a joy to watch Nathan grow into a young man and get to enjoy him as a human person. I also enjoy being able to share things I love with him, like The Office and How I Met Your Mother. He spends vast amounts of time playing video games and texting on the phone he finally got for his (14th) birthday this year. Seriously, how did he get so old?!



Christmas Letter 2015

Dear friends and family,

Once again, we decided to go the virtual route with our Christmas cards and letter. 2015 did not leave much spare room for such things (in fact, if I finish writing this before Christmas, it will be a miracle!). It was the year Katie turned 10 and Nathan turned 13! It was also the year we had a new baby (…and that new baby had open heart surgery!! What a year it was!

2015 1

Our lives certainly changed when our Little Duck finally arrived on April 12th at 2:45am at Bay Area Birth Center, after days of laboring on and off at home! It was a wonderful, midwife-assisted, natural birth and we truly loved the experience. (Read more here.)  I never thought I would say that about birth! Bodies can do amazing things when they are allowed to. It was so different than a hospital birth and if we have any more babies, we will go that route again for sure! We got the first of many surprises upon meeting our Little Duck, when we discovered she was a GIRL, who we named Josephine Danielle! Little did we know that Josie had QUITE an adventure ahead of her! At her two month well-check, the pediatrician heard a murmur and ordered an echocardiogram. On June 30th, we found out that she was in congestive heart failure because she had a very large VSD with significant shunting and we spent 10 days in the hospital with her, trying to get her heart failure under control and to get her to gain weight. (Read more here.) From then on, life was consumed by getting Josie to grow and eat and taking her to lots of clinic appointments and tests. We also found out she has a milk protein allergy that was working against her growth, as well. On October 23rd, she had open heart surgery to repair the hole in her heart and it went beautifully! She spent just 5 days in the hospital and her recovery went very smoothly. (Read more here.) Her growth has taken off and she is doing very well! Congenital heart defects are never considered cured and she will be a lifelong heart patient, but her heart is repaired and functioning well right now and should continue to do so, though she will be watched closely for her entire life. In spite of the major challenges she has faced this year, she is such a joy! She is an interesting mix of easy and challenging. She is so content and happy as long as all of her needs are met, but sometimes those needs include being held 24/7, having mom in the backseat of the car on every drive, staying up until after 1am, and having mom’s hand in the exact right spot on her back all night long. Overall, she is very predictable and a lovely, happy baby girl. We are so thankful to see her thriving these days! It is the best gift we could hope to receive this year!

2015 jo2015 jo 2



josie 2015

Before Josie’s arrival, we expected our lives to change in many ways as we revisited the baby days after such a long departure, but there were SO many unexpected changes as a result of her heart condition. The first couple months of her life, she was desperately trying to keep herself from starving to death so I nursed her around the clock and did little else, though we didn’t know why she nursed so constantly. After her diagnosis, I switched to pumping for her since her heart could not handle the work of nursing and have spent a LOT of time hooked to a pump and obsessing over my milk supply since then. Pumping is much harder than nursing because when you are nursing, at least the baby is happy and eating! That isn’t the case with pumping and it can be a difficult balance. When her milk protein allergy was diagnosed, I gave up all forms of dairy for her as well. Feeding her has been consuming to say the least! I’m still homeschooling Katie, but she has taken a much more active role in her education this year than she did last year. I think it has actually worked out better for her, surprisingly! Josh has taken over several Katie-related tasks so I can focus on the things Josie needs from me and he has had to take a step back from some fun things like camping with scouts to help things run smoothly here at home. We’ve also spent most of the year in quarantine, trying to keep Josie healthy before surgery and during recovery. However, we’ve still managed to spend time with our close friends, even if a large portion of it took place in the hospital, and see our families some. We’ve made time for game afternoons, fake Halloween, and Friendsgiving!  Josh has nearly completed a Descent campaign (an RPG he plays with a few friends) and played several round of disc golf with buddies, so we’ve fit in a good amount of fun in spite of the tough stuff. We’ve had to divide and conquer when it comes to the big kids schedules and take turns being present at their events because someone is always at home with Josie, but we’re making it work! Our family got to enjoy a weekend in Galveston in a crazy suite at the Moody Gardens hotel thanks to the kindness of Josh’s employer and one of his coworkers! It was amazing and we are still talking about it. We have been so blessed with all of the love and support we have been given this year and it has made all of the challenges seem much smaller than they were in reality!

2015 jk

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Nathaniel is 13 and considerably taller than me these days. He’s in 8th grade and doing great in school. It is his 4th year of playing alto saxophone and he is in the symphonic band once again. He is still participating in Boy Scouts, which encourages him to venture into the outdoors once in a while, and also spends copious amounts of time playing computer games and Skyping with friends. While, I  cannot believe we have a teenager, I sure do like this particular teenager. Some of my favorite parts of the year were spent introducing him to my favorite show, The Office, and watching Gilmore Girls with him. He really loves his baby sister and she loves him right back! When asked about his year, he told me it was “memetastic”.


Katie is 10 and in 5th grade. Homeschooling is still going really well! I worried about how it would go before Josie came along and once she was diagnosed we had to completely overhaul our curriculum plans for the year, but like I mentioned before, I think it turned out to be a better fit for Katie in the end. She is so much healthier now that she is no longer attending traditional school! We are so thankful that she has had a healthy year, it has made things so much easier to balance. We’ve had to let a lot of things slide this year (like therapies and medical appointments) while we focused on Josie, so I predict that we will be playing catch up in 2016! I am so thankful her health has been stable enough to give us this kind of leeway this year, in previous years I don’t know how we could have managed to keep everyone afloat! Katie is still participating in theater classes and was in a 60’s musical revue in the spring and Seussical Jr. this winter. She loves YouTube, Skylanders, Minecraft, and talking with her friends via FaceTime and Skype. She also ate her first sandwich EVER in November and she will gladly tell you all about her deep lover for Jimmy John’s BLT, hold the LT. Major milestone!! Katie also loves her new role as big sister and the hardest part of her year was the 6 weeks following Josie’s surgery when she could not hold her or pick her up! I don’t know what I would do without her help, especially when I have to pump and Josie is not in the mood for solo playtime or sleeping! I worried so much about how Katie would feel about losing her place as the baby of the family, but she has been too busy being the best big sister ever to care about that. When asked about her year, she said it was “THE BEST YEAR EVER!”. Of course.:)

2015 katie

If you survived reading this novel, thank you! You get a gold star! We hope that each of you will have a very merry Christmas and a wonderfully blessed 2016!


Josh, Kyla, Nathan, Katie, and Josie

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July, shortly after diagnosis/November, one month post-repair

This year I am thankful for so many things that no matter how many things I name here, there will be just as many, if not more that go unnamed. But here are a few anyway…

I am thankful for that precious baby up there, that we decided to have another baby a decade after our last, that we didn’t let K’s medical needs keep us from taking a leap, that she has been such a perfect addition to our crazy family.

I am thankful for her safe and gentle birth.

I am thankful for the early months of endless nursing. While we were in it, it seemed never ending, but it was such a short and precious time in retrospect and I miss it.

I am thankful that our pediatrician detected her murmur and sent us for an echo.

I am thankful for echocardiograms and EKGs and x-rays and labs (even though we hate them) and all kinds of medical technology.

I am thankful for doctors and nurses.

I am thankful that we live near one of the top hospitals for pediatric cardiology.

I am thankful for the medications that kept her alive while we waited on surgery and carried her through surgery and recovery.

I am thankful that my body has been able to provide milk for her for 7 months and counting, even if I did have to give up dairy and I totally hate pumping. Hate. Pumping.

I am thankful for my stupid fancy pump and the ability to rent it anyway.

I am thankful for Jenn, our precious milk donor, who also willingly gave up dairy for people she had never met to help provide milk for our sweet baby. Who does that mean? Someone awesome, that’s who.

I am thankful for elemental formula which has also contributed to her growth. Yay, science.

I am thankful for blood donors.

I am thankful that we live in such a magical time that people were able to stop my baby’s tiny heart and open it up and put it back together and then bring her back to life. Real magic.

I am thankful that we are on the other side of this surgery now and can breathe a little easier.

I am thankful that Josie has healed up so well and is thriving. Look at that chub!

I am thankful that K’s health has been mostly good and we have been able to focus on Josie during this season.

I am thankful for a husband who is always in the trenches with me, who has walked through all of this beside me, and always makes burdens feel much lighter. He’s the best.

I am thankful for friends and family and even strangers who have helped carry us through this crazy year. If you are reading this, that probably means you. Thank you.

I am thankful that even though it has been a scary year and I could have lost both my best friend and my baby girl to major medical issues, they are both still here with me.

I am thankful that God is always good, even when life isn’t easy or clear–maybe especially when life isn’t easy or clear–and for the peace that provides.

And there is more, so much more…it could fill pages, books, libraries…but for tonight, this will suffice. We are so incredibly blessed and our hearts are so full. Thankful, indeed.

Josie’s big surgery!

The quick version is this, she went from this…

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to this…


in 5 days!

The long version is, of course, much longer. It was the hardest experience of our lives thus far and we really, really hope it remains the hardest experience of our lives! Surgery wasn’t until Friday morning, but things got tough around Wednesday. Dropping off the kids, getting packed up and ready to go, it all made it pretty impossible to keep ignoring what we were moving towards. I spent most of the night awake, looking at my sweet girl. It felt like Christmas Eve, but the sort of anticipation was all wrong. Very early Thursday morning we went to the hospital for pre-op, which was a marathon day, and we found out two things. First, they had changed policy the week before and we did not necessarily have to be admitted to the hospital that night. Second, the hospital was at red (meaning totally full) and they may not be able to do her surgery on Friday if an ICU bed didn’t open up. As you can imagine, that it exactly what you want to hear after packing everyone up for a week and gearing yourselves up for something major like this! After we finished with everything (x-ray, labs, nurse meeting, child life meeting, social work meeting, surgery meeting, anesthesia meeting), we were semi-free, but had to stick close to the hospital while they decided what to do with us. We went to eat and then came back, puttered around some (pumped, ect) and then went up to clinic to check for an update. They told us they didn’t have a room and we did not need to be admitted so we started looking for a hotel, so we wouldn’t have to fight through AM traffic again to be at the hospital at 6:45. We found a little extended stay place nearby that had fridges in the rooms, which was important to me as I’d been lugging a cooler bag of my milk around all day! When we got there, the fridge didn’t feel cold but I turned the dial down more and thought it would cool off. Spoiler alert, after lots of waiting it did NOT. This was the only time I started to unravel a little in this whole process, because exclusively pumping for Jo is pretty much the HARDEST job I’ve ever had and I fight for every ounce of it (and we still have to do a mix of elemental formula and breastmilk) so the thought of my milk spoiling in a cooler bag at the 24 hour mark was just the last mental straw. If we had been admitted, my milk would have been safely stored in the milk bank, as planned! But no, here we were with a broken fridge at 9pm and 2 days worth of breast milk hanging in the balance. AGH! But Josh called the front desk and they said we could store it in their fridge. WHEW!/MY HERO! With that handled, we got ready for bed, set an alarm for 2:30 since it was the last time Jo could have breastmilk/anything prior to surgery, and managed to get a little sleep. It wasn’t restful, but it was more than the night before thanks to our exhausting day.

We got up early and headed to the hospital, hoping surgery was on! In pre-op, they told us that they STILL weren’t sure if it was happening, but they’d officially call it by 8:30. Eeek! Josie was a great sport even though she probably would have liked some food by now, and she played a little and then fell asleep.


They came and told us everything was a go and it was the weirdest, most intense mixture of relief and DREAD that I’ve ever experienced. Jo was fine, though, busy making friends.


After lots of talking and paper signing, we walked Jo down the hall and handed her off and they took her (and her binky and her Duck-Duck) from there…thankfully without any pokes or anything yucky while she was awake. Handing her off was hard for us, but she didn’t mind!


We spent the next several hours in the waiting area, which was really nice. They had a kitchen and snacks and tables and couches and our best friends came up to keep us busy while we waited. It was exactly what we needed and made the time bearable. We will forever (and ever and ever) be grateful that you guys were there with us!


We were given a restaurant-style pager that went off every hour and a half or so. When it buzzed, we went to a consultation room and our surgical PA came and gave us an update on what had happened so far and what would be happening before we saw her again. It was very helpful and reassuring. Then we’d go back to playing dominos and pretending like people were not in our baby’s open chest! Three cheers for denial!

These were the updates I posted to Facebook during those hours:

8:33am She’s in the OR now.

10:25am She is doing great so far. Perfect vitals. They placed her central and arterial lines while she was under and they are probably opening her up now. They said she wins the cutest baby award.

11:18am They are in her chest now and in the process of putting her on heart-lung bypass. All is still going well. They got us a picture of her heart, like her big sister requested.

12:47pm VSD is repaired, heart is closed and restarted! Now they are putting in chest tubes, pacing wires, ect. She’s still doing well.

2:11pm Surgery is done. She did perfectly! We will see her in the ICU in 45 minutes to an hour.

And at 3:30pm, we got to see her! It was 6 hours that felt like at least 24. By midnight, I swear it had been 3 full days since I woke up.

Once everyone left, we headed to the ICU. Honestly, our ICU time is a bit of a blur. We were exhausted and didn’t want to leave our girl and it all kind of runs together. We were there for a little over 24 hours and in that time, Josh and I both got about 1.5 hours of sleep each which we got by trading off going to our Ronald McDonald house room some time between 2 1 and 6am, I think. We were running on coffee and prayers, mostly.

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Facebook tells me that she was extubated a little before 10pm  that first night and then was very unhappy for a while because we couldn’t let her eat. That was one of the hardest parts of the ICU, not being able to feed her. First she couldn’t eat because it was too close to exubation and then was only allowed 2 ounces every 3 hours because of fluid restrictions. It made for an unhappy Jo. She was also obviously uncomfortable after surgery and we couldn’t comfort her like she was used to and then we had to withhold food on top of it. But the following evening, I finally got to hold her!



We were moved to a different ICU room because Josie was ready to be on the floor, but they didn’t have room. And shortly after that, a room opened up so we went down to the regular floor. Yay! Do you know what regular rooms have?? A bed for parents! No more choosing sleep or being with our girl! We left her in a crib that first night, but it was a mistake. We took turns hanging off the edge of it all night to give our co-sleeper some comfort, so the next night when we got moved again, I asked for a big bed for her and signed the co-sleeping waiver and we were FINALLY in a position to get some real sleep! On the floor, they also lifted her fluid restrictions so she was finally satisfied and not starving all the time! Yay! Things moved pretty well from that point on.


Lets jump back to the beginning of recovery for a minute. She was hooked up to A LOT of stuff at first; she was intubated and on a ventilator, had an NG tube to keep her tummy empty, two peripheral IVs, 1 arterial line, 1 central line, chest tube, pacing wires, plus regular monitoring stuff. She was on several IV medications at first.


But Josie had a pretty steady road of recovery and dropped things quickly. First, she was extubated. The only problem there was she experienced some stridor and required a racemic epi nebulizer treatment and a round of steroids for the next 24 hours. Later, she had a beside laryngoscope and they discovered she has a paralyzed vocal cord. It may have been pre-existing as she has experience stridor before or it could have been caused by the surgery or intubation. We have to follow up with ENT about it and are having to watch her for signs of airway issues and aspiration. Intubation was also pretty rough on her poor little nose.


After extubation, she was on O2 for a while and then dropped that. You can see her chest tube here and the pacing wires (in case she had rhythm issues) are under the gauze.


Then they pulled her arterial line…

IMG_9822_filtered Before we moved to the regular floor, they pulled her central line (in her neck, it still has a yucky bruise)…


Then the chest tube and pacing wires came out…


And the last things to go were her peripheral IVs right before we were discharged! We really could not have hoped for an easier/better recovery for her in the hospital. It was a busy time…labs, chest x-rays, laryngoscope, echo, pulling lines and such. Seems like things were happening every day and we never had a day where we were just sitting and waiting, our girl just kept on knocking down those milestones and then we were free!

Some of my favorite moments were these:

First finger squeezes in the ICU that first night while she was still intubated and sedated…


First open eyes in the ICU, probably 24 hours or so after she was out of surgery…


And first SMILES, at 3 days post-op!


Each of them meant that our sweet girl was coming back to us more and more! ♥

Since we’ve been home, she has continued to do well, but is somewhat frustrated with her limitations. At 6 months, the wider world has just really opened up to her and now it all seems slightly out of reach. It has been a very demanding and hands-on phase of parenting for Josh and I as we try to keep her happy and entertained within her limits. The first couple of days at home, she did NOT nap, which compounded things a bit. Thankfully, naps are back! While she is allowed to do whatever she can comfortably do herself, she is tentative with things like rolling over, but laying on her back is NOT very fun since she knows there is more to life! A lot of fun things we do are off-limits because of the way we have to hold her. No fun lifts over the head or knee bouncing or standing in our laps. I can’t manage to put her in or take her out of her stander or Bumbo with the approved holding position so that has to wait for Josh. Life is just different than she is used to and she doesn’t really understand why, I’m sure. But we are already 1.5 weeks post-op so only 4.5 more to go before she can get back to normal! Yesterday her chest tube stitch was removed so now baths are back on the list! Yay! We are still also on germ-restriction until the 6 weeks is up and need to be extra careful now that she also has airway issues, so it means a lot of time stuck in the house which is only so interesting (for all of us, LOL!). She seems to be adjusting a bit more the past couple of days, though. Regardless of the little challenges, we are so thankful she is healing well and hope it continues! The challenging parts will be short-lived and we are so thankful that our girl came through this huge surgery so successfully. We’re not quite out of the woods yet, but we can see the light in the distance now! We are so thankful for all the support and prayers and all the little and big things people have done for us along the way. None of it has gone unnoticed even if we haven’t gotten around to making official thank yous just yet!

Here she is yesterday, happy and up half a pound since Friday! Having a properly functioning heart really makes growing easier! So, so, sooooo thankful our precious girl seems to be thriving now!!!


Coming (Too) Soon: Open Heart Surgery

Josie is 6 months old and a total JOY! It has been a weird, wild, and exceedingly blessed six months with our sweet, tiny girl.

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Unfortunately, that means it is time for her big open heart surgery to repair her VSD. Tonight, we drop the kids off at their respective homes for the near future, and tomorrow morning at 8am, Josh, Josie, and I will be at the hospital for her pre-op appointment. After that, she will be admitted for the night and be taken for surgery sometime Friday. Surgery will last roughly 5 hours, once it has started. Following surgery, she will be in the ICU for a few days (no non-adult visitors and per our request, no visitors that will be upset seeing her in that state…we will not be in a position to make anyone feel better, unfortunately.) and on the cardiac floor for several more, providing all goes well. Please pray for all of us. Josh and I are understandably anxious, the kids are going to be out of pocket and without us for quite a while, and poor little Jo will have to endure much more than a wee one should have to endure! I’m especially concerned about how she’ll sleep…we co-sleep at night and for naps she likes to be bounced and patted to sleep across my lap, none of which will be possible following surgery. Pray for a successful procedure, smooth recovery and positive growth post-op, effective pain relief and rest, nurses that love her, for her smiles to come back quickly, peace for her siblings, and a whole lot of patience and just the right amount of denial to get us all through this. I wish I could blink us into the future where she will be happily recovered, but the only way to get to the other side is through, so here we go!


Food We CAN Eat!

I’m putting this together for people who might want to bring us food either while we are in the hospital with Josie or after we get home, because with our dietary restrictions it can be a tricky thing to do! I wish we were low maintenance!!


Jason’s Deli, Pei Wei, PF Chang’s, Cheesecake Factory, Ruggles Green, Chili’s, Smashburger, Carl’s Jr, Baba Yega, Hungry’s, and most Mexican restaurants


General tips: 

*If something calls for onions, we sub onion powder.

*If something calls for butter, we use Earth Balance soy-free (found at most grocers, 

*For tortillas, we use corn or Udi’s gluten free (found in freezer section at Target/HEB,

*For bread, we use Udi’s gluten free (found in freezer section at most grocers,

* For breadcrumbs, we use Ian’s panko ( Not all varieties are dairy-free, but they are labeled really clearly. We find them at Kroger.

*For a thickener, we use cornstarch.

Mexican crock pot chicken (just read the seasoning packets to avoid milk/gluten, we use McCormick fajita seasoning):

Slow-cooked Mexican Chicken

Meatloaf and Mashed Potatoes (just use regular mayo):

Gluten Free Meat Loaf & Mashed Potato “Cupcakes” Recipe

Pineapple and chicken kabobs (use GF soy sauce):

Sweet/Spicy chicken:

Italian chicken and potatoes:

3 frozen chicken breasts, some cubed white or red potatoes, 1 bottle of Italian dressing (read label to avoid dairy/gluten), put in crock pot on high for 4 hours.

Easy Meals, no recipes:

Sloppy Joes: Manwich can, beef, Udi’s bread, tater tots

Tacos: just check seasoning for gluten/milk

Spaghetti: use GF pasta and sauce that is gluten/dairy-free

Chicken nuggets: Simply Balanced gluten-free from Target ( or Applegate gluten-free nuggets (

Hopefully that helps! If you are uncertain if an ingredient is safe, you can always snap a picture of the label and text/FB it to me!:)

Gluten-free/Dairy-free Substitution Awards

I have been gluten-free for several years for my own health reasons and now I’m also dairy-free because of Josie’s severe dairy allergy. People like to ask me, “What CAN you eat??” Heck, I ask myself the same thing sometimes! Fortunately, I have found some satisfying subsitutes for my favorites…for the most part these are even approved by my family members who can eat normal people food! I’ve come across others who are facing elimination diets and wanted to share what I’ve learned so far in case I makes things easier.

Best Ice Cream Substitute:
Hands down, the winner is Blue Bunny almond milk ice cream. It is soft and creamy, way better than coconut-based ice creams which tend to be thin and icy. Good stuff! 

Best Pizza Substitute:

Daiya frozen pizza is the winner here. I am not a big veggie fan so I’ve only tried the cheeze lover variety, but it is good. I don’t know what kind of alchemy they use to make a GF/DF pizza work, but I’m glad someone figured it out!

Best Packaged Cookies:

Cybele’s Free To Eat chocolate chip cookies are very yummy! Soft and not crumbly with a good flavor.

Best Hamburger:

This one is a toss up, as both Smashburger and Cheesecake Factory have very respectable GF/DF options, just make sure to stress NO BUTTER when ordering. I think the avocado club at Smashburger might have a slight edge because avocado does a good job of replacing the creaminess that is missing without cheese. Oh, cheese, I miss you.

Best Fast Food options:

My family likes to eat out so this has been one of the harder parts of food allergies. We frequent Wendy’s where I get a bunless grilled chicken sandwich, Carl’s Jr where a I get a “low carb style” lettuce wrapped burger, Chick-fil-a where I get grilled nuggets, PeiWei where I get the GF spicy chicken or shrimp. Everyone is pretty sick of these options already, but at least they have a whole menu to choose from!

Best Baked Goods:

King Arthur GF brownies prepared with oil are the best baked good I’ve eaten since going GF/DF. I tried Pamela’s GF/DF brownies, but they were not nearly as good…sort of grainy even when warm and gooey. King Arthur is perfect.

Milk substitute:

Almond milk. I really expected to prefer coconut milk, but it is just too thin. I am not a milk drinker, so I only use it in other things (cereal, coffee), but my go to choice is unsweetened original almond milk.

Best Coffee On The Go:

Soy latte. I used to be a mocha girl, but now I’m a soy latte. Ordering it makes me feel like I’m pretending to be someone else, but it is surprisingly tasty. Many babies with dairy allergies are also sensitive to soy, so I don’t go crazy with soy stuff, but thus far Jo has been fine with it. 

Best Coffee At Home:

Lots of options here that are equally good. 1 tbsp coconut oil tossed into the blender with your coffee for a few seconds is great. Soy or almond milk creamers are good. Coconut milk creamers aren’t creamy.  Boo. (Don’t be fooled by “non-dairy” creamers, they do contain milk protein which is what triggers the allergic reactions.) Almond milk itself works, too, it just isn’t as creamy as the other options.

Best Mashed Potatoes: With dairy, without dairy, these are the best mashed potatoes I’ve ever had! We use regular mayo since we are not vegan.

Best Donuts:

Kinnickinnick frozen cinnamon and sugar donuts. YUM. These are so good that Josh will steal them.

Best Protein Bar:

Ugh, eliminating gluten and dairy makes finding a good protein bar tough! I don’t always have time to eat an actual meal, so I like to have bars to fall back on, especially on the go when there may not be a safe option around. The best option I’ve found are KIND bars, the kind with nuts. They usually run about 7g of protein, which isn’t a ton, but they are tasty and will buy you some time.

Best Buttter Substitute:

Earth Balance soy-free. Honestly, I haven’t tried their other varieties because this one was recommended to me and it fit the bill.

That is all I can think of right now, but if there is something not mention here that you are looking for, please ask! I’ll do a follow up post with meal ideas soon…whatever soon means for someone with a homeschooled kid with mito and a baby with a major heart defect who will be having open heart surgery soon! 😉 And please forgive any typos or errors, I wrote this on my iPhone in the dark next to a sleeping baby in between stirrings…no proofreading happening here!

New Normals

Life has changed so much since Josie’s diagnoses (VSD, congestive heart failure, failure to thrive, and milk protein allergy…a diagnosis for every month of life so far)! It is definitely more complicated logistically (more on that later), but actually getting the nutrients she needs and having her heart failure medically controlled has changed her little life for the better. She was in survival mode before the hospital stay (which we didn’t realize) and all she could do was try to eat constantly to keep herself afloat. She didn’t have the luxury of liking things or napping or doing much of anything because she was working so hard to live, basically. Now that all of that is under control, she’s blossomed into this wonderful tiny little person with actual wants and preferences and routines and we love it! She’s a sweet, easy going baby. She loves to socialize and be held. She LOVES her binky and Duck-Duck(s). She’ll only drink a bottle from me or her daddy. She fusses to say “Feed me!” or “Rock me to sleep!” or “Stop poking me with the needle!”. She recently started laughing at me and it is the best thing ever! It is such a treat to get to know her more and more every day.

For me, though, even though Josie’s level of need has decreased in some ways, life has also gotten more complicated. It WAS tough to be constantly nursing her in those early months, but nursing itself is relatively simple. When I would pump to store some milk, that was simple, too, because I could do it when it was convenient and not worry about it when it wasn’t. In fact, bottle feeding is also fairly simple (though it takes more prep work than nursing). But we are now taking the hardest part of both of those things and combining them with exclusively pumping and bottle feeding! I pump for her roughly 6 times a day to maintain my supply and I just barely get what she is taking most days, which is a bit stressful since she refuses to take straight hypoallergenic formula. I’ve tried several different things to boost my supply (domperidone, fenugreek, More Milk Plus, lactation cookies, power pumping, ect.) and while there is a positive trend, it is still barely matching her intake. I’d love to have a little cushion! I can’t be gone for longer than 4 hours or so or I won’t be able to get enough sessions in for the day. I have to balance her needs (and Katie’s) with the pumping mandate and she is not always happy or full or sleeping when I need to pump. At least with nursing, the baby is fully occupied and content while you “work”. It isn’t the same when you are pumping! It is more complicated at night, too. Instead of rolling over in the night to nurse her, I set an alarm at get up at 5am to pump and Josh has to get up to heat bottles from the fridge in the night when she wakes. (FYI, a Keurig is the BEST bottle warmer on the market. Plus, it makes the coffee which is essential to life!) We have to mix her breastmilk bottles with a little bit of hypoallergenic formula to increase the calorie content because her heart burns up so many calories just by beating, so that is another extra step. In addition to that, Josie has a milk protein allergy (thus the yucky hypoallergenic formula) and that means I can’t have dairy either. I am already wheat/gluten-free for my own medical reasons, but now I’m dairy-free, too! It is QUITE a challenge and while I’m happy to rise to the occasion for my girl, it is not yet an easy thing, especially at dinner time when we have to find meals that all of us can/will eat. It IS challenging for sure, BUT our girl is GROWING! FINALLY! She’s gaining weight! She has some leg rolls and her cheeks are chubbing up! She isn’t having bloody stools anymore! It is SO SO SOOOOO worth ALL the hard work to see her thriving!

K has some additional things of her own going on, as usual. She needs a new sleep study and MRI since her spells of “forgetting to breathe” have returned/increased in frequency. She needs a new GJ tube since hers is a little broken (so we are combining that with Josie’s next cardiology appointment). She needs to put on a little more weight (which is comparatively easy, just adding more formula scoops to her feeds). Her glasses prescription needs updating so she can see properly. I’ve had to cancel like 5 appointment for her since Josie’s birth that need to be reschedule at some point. And she is just about to start the 5th grade, so I’ve been using my “free” (ha!) time to complete lesson plans for the first semester since I will be out of pocket for Josie’s upcoming open heart surgery and have no idea when it will be exactly. I’m so thankful we have the freedom and ability to homeschool her, becase even if it isn’t always easy, we do feel like it is the best thing for her. We’re also in the process of trying to hire a nurse for her to help her life run smoothly while we deal with Josie’s heightened needs right now, as well as the upcoming surgery and recovery period.

So yes, life is very different for us right now, but if there is anything that K has taught me over the years, it is that ANYTHING can become normal if you just give it a chance and every single day has the potential to be the BEST DAY EVER, if you’re paying attention to all the awesomeness around you. And there is a lot of awesomeness tucked into our wild and crazy days.

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