Dear Parents of Children Who Don’t Have Food Allergies,

 

empty-plate2I’m writing because I know that food allergies can be a difficult subject to understand from the outside and that it can be a challenge to change your child’s diet, especially for reasons that have nothing to do with them personally. Here are a few things that I’d like you to know.

Most food allergy parents HATE to be a burden to others.

We hate that we have lists of places we cannot safely go or activities we have to say no to participating in. For Josie, this includes any home with free-roaming pets and anywhere she can encounter dairy, eggs, or nuts in the environment. An errant piece of shredded cheese that she finds and pops in her mouth can be the difference between life and death. We hate that we have to worry about what our children are eating AND what your children are eating, if they are in close proximity. We hate having to remind people to wash their hands after eating or before touching our children. We hate that people are forced to change their diets and behaviors to be around us. We don’t want to micromanage our OWN lives, much less yours! We want to shout, “I wasn’t always like this!” from the rooftops. BUT we love our food-allergic child so much more than we hate any of those things and because of that, we’ll stand firm even if it goes against every laid back bone in our bodies. Our child’s life truly hangs in the balance and our diligence is the string they are dangling from as they live and move in a world where seemingly innocent items that can take their life.

We know what it is like to totally overhaul a diet, because we’ve had to do it for keeps.

We know it isn’t easy to find substitutes for your child’s favorite lunch or snacks because we’ve been there, except in many cases, we’ve had to find permanent replacements not just for our food allergy child, but for the entire family. We’ve personally had to remove all dairy, eggs, and peanut/tree nuts (and anything containing those items, even in trace amounts) from our home, every meal is different now. Do you know how much this family loved CHEESE? Do you know how many foods have milk, eggs, or nuts in them, even in trace amounts? Almost all of them. We basically started with a blank slate and had to rediscover the wheel. So we know it is a difficult adjustment, even for a single meal, but we also know that sometimes you find some new favorites when you are forced to try new things.  Food allergy parents are also great resources for ideas of substitutions that are actually pretty tasty! If you are struggling to find something safe and yummy, ask an allergy parent for help. We really like it when all of this knowledge we’ve been forced to acquire can help others!

We know what it is like to have picky kids that will not accept substitutes.

Josie is my food allergy child, but K is my picky(est) eater. Because of her complicated sensory and medical issues, her list of foods is infinitesimally small. I know that when some of you say, “My son will ONLY eat peanut butter sandwiches.” it is really true. At the time Josie was diagnosed, the foods K was eating here at home were: bacon and mayo (mayo has eggs), Blue Bell Homemade Vanilla (eggs + dairy), Cool Ranch Doritos (dairy), and Lay’s Classic chips (SAFE!). She almost lost her entire diet. Thankfully, she is mostly tube-fed, and thankfully, she is on elemental formula which is safe for Josie to be around, but it is a less-than-ideal situation. (We have had to make the compromise, against allergist instructions, to allow “contraband” to be eaten on the premises, but only outside and with thorough washing afterwards.) We understand that this is a difficult place to be in, truly, and as I said earlier, we hate to be putting you in this difficult position, too.

We know that one day our children are going to have to be responsible enough to avoid eating their allergens without us engineering their environments, but today is not that day.

One day, Josie is going to have to wake up and get ready all by herself, get in a car, drive to a job, feed herself, make her own coffee, use a toilet, avoid all of her allergens, and do a lot of other complex tasks that she is nowhere near ready to do. But today, I’m not going to put her in the front seat of my car, start the engine, and put it in drive, and watch what happens. Obviously, it would be beyond her capabilities to keep herself safe in that situation. Managing food allergies is also a complex task that she is nowhere near ready for, and she won’t be able to make these life or death decisions for a very long time, so until then she needs to be in safe environments and with people who know how to keep her safe and are willing to help do so.

We are so incredibly thankful for the people in our lives and communities that take the time to understand these things and accommodate and include our children.

Food allergy life can be isolating. There are so many places we cannot go, so many things we cannot eat, so many people we cannot trust or who aren’t all that interested in making the sacrifices it takes to be a part of our lives after all of these changes. We are so lucky to have people in our lives who are not put out by constantly having to come to our house, who don’t mind reading labels or running things by us for safety, who remember to wash up, and some of whom have even declared their new upstairs to be a pet-free, food-free area so that Josie can get out of the house sometimes, and are definitely 100% on Team Keep Josie Alive, and we are endlessly appreciative of it. We know it isn’t easy!

If you are feeling (understandably) bristly or frustrated about the changes that you need to make on behalf of someone else child either at home or in your direct community, there is a really simple way to quiet those feelings…imagine it was YOUR child. Take a second and really think about it. Imagine that you had to send your child out into a world where milk or eggs or nuts or a sliver of cheese or a crumb of cookie or the wrong brand of sunscreen or finger paint or the powder inside a balloon could take their life at any time if you were not diligent. Imagine that you are all that stands between them and death, every day. Imagine that what you pack in their lunch or what her classmate packs in his lunch has consequences that could last a lifetime, or could at least determine the length of a lifetime. Imagine that you wake up in a panic at night because you can’t remember if you read a food label (you did, probably 3-4 times already) so you have to get up and dig through the trash to be sure you didn’t absentmindedly put your child’s life in danger. Imagine that one day you will see your child in distress, struggling to breathe, and have to hold her down and jab a needle into her thigh and hope it saves her as you wait for an ambulance, because something got past you in spite of your best efforts. Imagine it is your child that needs a community to stand between him and mortal danger and imagine how thankful you would be for those people, how amazing it would be to have people willingly step in and help you keep your child safe from harm…and then go, be one of those amazing, life-changing, life-saving people! ♥

 

 

How We Do Homeschool: 6th Grade Edition

Today is our last day of summer. Tomorrow N starts high school and K starts middle school! My kids are getting so big! Back to school feels very different this year because N has been going to school daily for summer band for several weeks now and K doesn’t go to traditional school, but this weekend N’s supplies were bought and K’s lesson plans were rounded out and I think we are mostly ready to go! Our last day of summer is going to be spent gathering some library books (if we have time), going to summer band, and taking Josephine for her feeding/speech therapy evaluation. Party animals!

This will be our third year homeschooling. WOW! It doesn’t seem like we’ve been at it that long. Last year, I never got around to posting our plans here, I was mildly distracted by the whole baby with heart failure thing. We basically had to throw out our plans last year (and re-sell our purchased curriculum) and restructure everything so I could be more hands-off with K and more hands-on with Josie, who required (and sometimes still requires) many, many hands. It actually ended up being FANTASTIC! K and I were both so much happier with how things went, even though we both enjoyed the previous year. This year we are trying some new things and keeping some old things, with the same basic format. (I’m using this homeschool planner this year and really liking it so far. I print multiple copies of each 6-Week calendar; one for each subject, plus an extra for enrichment.) Here is our overall plan for K’s year:

Math:

We changed from Teaching Textbooks to Life of Fred + Khan Academy over the summer. K likes this combination a lot better (I mean, it is still math and she basically hates it, but she hates it less!). We are doing Kidney, Liver, Mineshaft this fall and will move onto Fractions and Decimals & Percents in the Spring. She is working through the Arithmetic Challenge on Khan Academy. We are going to try Reflex to try and improve her math fluency, too, as she really struggles with remembering those facts. Math is her most challenging area so we are taking it slowly and trying to really get that foundation set, it is definitely a process!

History:

We are continuing on with Story of the World Volume 2 and have subscribed to the Skrafty class, as well. Minecraft assignments to go along with core class, SCORE!:) We may be reading some Horrible History books again this year, too. K really got a kick out of them last year. She also watches the Crash Course World History series that coincides with the sections she is covering, and utilizes other online resources to beef things up a bit. (I do an enrichment folder for each week on the computer that she works through that matches up with content from her various subjects.)

Science:

K chose Anatomy and Physiology this year as her science course, so we will be using Apologia A&P along with the Skrafty course for it. She’ll read some Horrible Science books like last year, too. She will also be watching the Crash Course A&P (and Biology, when appropriate) videos and doing other online enrichment activities.

LA and Reading:

We will be using Easy Peasy All In One, 6th grade Language Arts and 6th Grade Reading for her main curriculum, and are going to start the year working through the Mensa for Kids reading list for her age. She’ll probably zoom through that pretty quickly, but we have more lists!:) (Last year, she read through most of the Newbery Award winners that our library has.) She is definitely well above grade level for reading, but it can be challenging to find appropriate content at higher levels and I think a lot of the classic books are worth reading even if they are not a challenge. She is going to read some books from this list that are also on StacyPlays Book Craft vlogs, she’s very excited about this! She’ll also be working on Vocabulary.com regularly. She does her written work on the computer to help with muscle fatigue and we are using Google Docs this year so she isn’t tied to her computer and I can access the files when I don’t have direct access to the desktop computer she uses.

****

K has some issues with organization and remembering what she needs to be doing, so we are working on that, too. “Oh, I forgot!” is a frequent refrain around here! We are going to be using a notebook to keep her on track for both school work and home tasks. We also implemented a plan over the summer to help her remember to do her morning tasks (brush teeth, start tube feed, do school work, ect) which involves iPad alarms and no screen-time until her tasks are complete. Progress is being made! Yay! She said, “You know, since you made that no screen-time rule, I’ve been using things in my room again!” Ha! Imagine that.

Homeschooling has been SO wonderful for K. Her health has improved so, so, SO much since she stopped attending traditional school. I think it is a combination of being out of that never-ceasing cascade of germs and not working herself to exhaustion on the daily that has helped her so much. I love that she can pursue things she is interested in and we can work on her levels (watching things like Crash Course that are meant for high school AP students in areas where she excels or backtracking a bit when we need to with math), and that she has enough energy to do things she loves, like theater! Meanwhile, N does wonderfully in public school and thrives in that environment. I’m so glad that each of my kids can get what they need out of their educations. 2016-2017 school year, here we come!

 

How to Feed a Baby

Step One: Have a baby.

Step Two: Feed it.

Ha! If only it were this easy. In case you didn’t know, it is World Breastfeeding Week. I’ve been meaning to collect my thoughts on my most recent breastfeeding journey for some time now and this was just the nudge I needed. I’ve had different breastfeeding experiences with all of my kids. N was a great nurser, but I was young, not super well-informed, and uncomfortable nursing in front of people, so I opted to do a combination of nursing and formula feeding. K couldn’t latch for the entire first month, so I pumped for her (though now I know I had no real knowledge about how to properly do so) and supplemented with formula. Once she could latch, she hated it and basically refused to continue. We know now that all of these complications were symptoms of her undiagnosed hypotonia and other assorted medical issues. We switched to formula and that was that. She’s STILL on formula at 11 years old. And then there was JOSEPHINE!

With Josie, I strongly desired to exclusively breastfeed, I researched and read and we jumped in with both feet, fully understanding the commitment and sacrifice it requires.

Even though she had latching issues from the start and was latched to me almost constantly, we persisted. No bottles; just me, Josephine, and a nipple shield.

When we noticed her low weight gain, I started pumping in addition to perma-nursing. Nursing plus pumping and bottles, no formula.

When her heart defect was diagnosed, I had started pumping exclusively (doctor’s orders), she had to briefly have an NG tube, and we had to add formula. No nursing, all pumping and bottles, plus formula and some tube feeding.

When her dairy allergy was diagnosed, I gave up dairy and we switched formulas (multiple times). My supply was low and a sweet mama offered to GIVE UP DAIRY and donate some milk to my girl, and then another friend offered hers as well. All pumping and bottles, plus hypoallergenic formula and precious, precious donated breastmilk, minus delicious dairy.

After her open heart surgery, she was cleared for nursing again, but she would not do it. It had been too long and was foreign. So we kept on. All pumping and bottles, plus hypoallergenic formula and precious donated breastmilk, still no dairy goodness.

Right before she was a year old, she had additional allergies diagnosed. We kept on chugging (or, more accurately, limping) until she hit a year and then I weaned from pumping and she moved on to soy formula.

fedisbest

It looks so nice and neat written out like that, but it was agonizing. Every time we “lost” something, it hurt. I loved nursing her, even though it was very, very demanding, but I hated pumping. I HATED IT. I hated how it felt. I hated having to choose between Josie and the pump. I hated having it rule our schedules and how far from home we could go. I hated waking up in the night to pump when everyone else was asleep. I hated washing the parts. I hated the hand cramps from massaging and compression to maximize output. I hated agonizing over how much milk I was or was not making. I hated trying new supplements and medications to try and increase my supply. I hated that it took up every inch of my brain that was not devoted to heart failure and open heart surgery and failure to thrive and food allergies. I. Hated. It. And yet, I’m very, VERY proud that I was able to provide her with mostly breastmilk for the first year of her life. Breastmilk is AMAZING! It is so much more than a food. (This article is pretty great at delving into that.) Josie had so many things working against her, being able to provide her with up to date antibodies and easily digestible, perfectly personalized nutrition was something *I* could do to help her, no matter how much I hated it. It was worth enduring all of the hated bits to see her get through that first year so successfully. I’ll always be a bit sad at what we lost through the ups and downs. In a perfect world, we would have had an exclusive breastfeeding relationship and we’d still be at it today, but the world we live in is decidedly NOT perfect, so I had to learn, once again, that FED is best and what I want is not always what my children need. Exclusive breastfeeding, exclusive pumping, formula feeding, tube feeding, donor milk feeding…we’ve done them all and they have all worked together to build this perfect little baby.

IMG_2153_filtered_E

There is so much constant debate in the world about the RIGHT way to mother, the “right” way to feed or sleep or discipline, and while there are certainly clear cut WRONG and dangerous ways to do such things I am unconvinced that THE singular right way even exists. Breastfeeding is VERY, VERY important and I wish more people truly understood the amazing process from start to finish and the myriad benefits and I wish our nation had policies that supported breastfeeding women and helped them do so successfully, but it is also VERY, VERY important to mother the child you have, in the way that child needs to be mothered. Josephine needed to be fed THIS wild and crazy way, and so that’s how we did it. I just can’t have regrets about that, and I know I’d make the same choices if I was zapped back in time. I’m sure there are breastfeeding mamas who saw her with a bottle and pitied her or formula-feeding mamas who wondered why I was being a total crazy person and didn’t just give up the loathsome pumping instead of complaining about it, but this is what RIGHT looked like for us. This is what BREASTFEEDING looked like for us.

If you are pregnant or plan to become pregnant, RESEARCH breastfeeding, whether you are for or against or undecided. I have read lots and LOTS of posts and articles about about feeding babies; breastfeeding babies, bottle-feeding babies, bottle-feeding with expressed milk, bottle-feeding with formula, why breast is best, why formula is just as good, breastfeeding myths, pumping tips, OY! There is a ton of information out there; some of it solid, some of it mean-spirited, some of it idiotic (only feed your baby homemade organic broths because formula is GMO poison. NO. Just, no.), some of it is defensive, some of it is neutral, some of it is very helpful. Find the good stuff and read and read and read all you can. La Leche League, Kellymom, and The Leaky Boob are all good starting places. Find out what your amazing body is capable of! Read about feeding on demand and clusterfeeding and co-sleeping and how consuming and rewarding a breastfeeding relationship is, read about the highs and the lows of it, read about caffeine and alcohol and medications, read about “booby-traps”, read about all the amazing benefits for moms and babies. Then decide if you want to breastfeed (I am pro-breastfeeding, but there are loads of valid reasons why someone may not want to breastfeed and it isn’t anyone else’s place to judge or question those reasons), read and read and read some more. Too many healthcare professionals know little to nothing about breastfeeding and if you rely on your OB or pediatrician as your main resource, you can easily be led astray. Be informed about your body and your baby, and do at least as much research about it as you do on car seats and nursery decorations (this goes for pregnancy and labor, as well, YOU should be the expert on YOU). If you want to breastfeed, be prepared for the demands of it and understand why the sacrifices are so worthwhile. Make sure your partner is also prepared for the demands of it and understands why the sacrifices are so worthwhile. People expect it to be an easy, natural thing, but there is a definitely learning curve and many people think that means that it is not working properly and give up. Know more than you think is necessary. And then, be prepared to LISTEN to your baby, and do what is right for him/her above all else…a practice that has applications and benefits that extend WELL beyond feeding and infancy. ♥

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: http://www.breastfeeding-problems.com/congenital-heart-defect.html 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.

IMG_2629

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.

josie_diagnosis

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.

josie

 

*****

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:

https://ourlifewithk.wordpress.com/2015/07/03/josies-heart/

https://ourlifewithk.wordpress.com/2015/07/12/home/

https://ourlifewithk.wordpress.com/2015/08/14/new-normals/

https://ourlifewithk.wordpress.com/2015/11/04/josies-big-surgery/

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: https://simplygluten-free.com/blog/2011/03/gluten-free-dairy-free-meat-loaf-mashed-potato-cupcakes.html 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!

13076971_10153419875655800_1379313833579529662_n

Josie:

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.

13244210_10153474568020800_1097084643418646324_o

13310507_300369590295249_3957072661777823256_n

K: 

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!

13139156_10153449825920800_827767420854814127_n

N: 

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?!

13245289_10153474714540800_2970848685646880741_n

 

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

 

IMG_0754-0

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

IMG_2570IMG_2704IMG_3112IMG_3544IMG_3795IMG_3802IMG_4382 12345601_10153143677820800_8153742837664065895_n12265762_10153128098410800_1651926151927818932_o

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”.

2015

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!

Love,

Josh, Kyla, Nathan, Katie, and Josie

IMG_0313_filtered_e copy2

Thankful.

 

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…

12193521_10153088951740800_2427432277030068436_n 12039420_10153073394395800_8355447679253150890_n

to this…

IMG_9869_filtered

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.

12188931_10153088951620800_5963862394829781519_n

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.

12189730_10153088951660800_6979133661425867946_n

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!

12141641_10153072719800800_2178203887220500340_n

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!

IMG_9793_filtered_e

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.

IMG_9809_filtered_e copy

12189825_10153088952605800_8026904503706317669_n

IMG_9814_filtered

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!

12049378_201092350222974_5084203079024882268_n

12208680_10153088952825800_6319894071658462226_n

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.

12191675_10153088953130800_4865527543799589067_n

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.

IMG_9804_filtered_e

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.

IMG_9821_filtered

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.

12196029_10153088952220800_4960822177333190680_n

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)…

IMG_9836_filtered

Then the chest tube and pacing wires came out…

12072606_10153088953610800_5626801765950662135_n

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…

12189820_10153088952140800_3851896235814204654_n

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

12193465_10153088952470800_6276142170627885685_n

And first SMILES, at 3 days post-op!

12193862_10153088953500800_7621641341959264898_n

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!!!

IMG_9909_filtered_e

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.

IMG_2094.JPG IMG_2493.JPG IMG_2856.JPG IMG_3821.JPG IMG_3353.JPG IMG_3731.JPG IMG_3748.JPG

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!

IMG_3815-0.jpg