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

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!!

Restaurants:

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

Recipes:

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, http://www.target.com/p/earth-balance-spread-15oz-soy-free/-/A-21506481#prodSlot=medium_1_1&term=earth+balance+soy+free). 

*For tortillas, we use corn or Udi’s gluten free (found in freezer section at Target/HEB, http://www.target.com/p/udi-s-gluten-free-plain-tortillas-15-2-oz-6-ct/-/A-16856733#prodSlot=medium_1_19&term=udi).

*For bread, we use Udi’s gluten free (found in freezer section at most grocers, http://www.target.com/p/udi-s-gluten-free-white-bread-12-oz/-/A-15016585#prodSlot=medium_1_36&term=udi)

* For breadcrumbs, we use Ian’s panko (http://iansnaturalfoods.com/products/gluten-free-original-panko-breadcrumbs/). 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):

http://celiacfamily.com/slow-cooked-mexican-chicken/

Meatloaf and Mashed Potatoes (just use regular mayo):

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

Pineapple and chicken kabobs (use GF soy sauce):

http://www.foodnetwork.com/recipes/tyler-florence/chicken-and-pineapple-skewers-recipe.html

Sweet/Spicy chicken:

http://www.whatscookinchicago.com/2007/05/sweet-spicy-evening.html

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 (http://www.target.com/p/simply-balanced-16oz-gluten-free-chicken-nuggets/-/A-17165770#prodSlot=medium_1_14&term=simply+balanced+gluten+free) or Applegate gluten-free nuggets (http://www.target.com/p/applegate-naturals-chicken-nuggets-16-oz/-/A-15389403#prodSlot=medium_1_2&term=applegate+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:

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

IMG_8775_filtered_e copy

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 … Continue reading

Home!

We were released from the hospital on Friday and it is SO wonderful to be home. Josie is so different now, it is almost like one baby went into the hospital and another came out. Before she was hospitalized, she was nursing almost non-stop and everything else happened in these little 5-15 minute breaks where she either fell asleep briefly or was awake and happy and played with us for a bit…then back to nursing. I know everyone says they nurse their newborn non-stop, but seriously, there were many days when Josh came home and I told him that she was attached to me all day with a COLLECTIVE break time of 30 minutes for the whole day. She nursed A LOT. Everything else was much further down the list. Poor baby was working so incredibly hard to barely break even nutritionally that she COULDN’T do anything else. But somehow she was still so happy! In the hospital, we used a combination of timed feeds and the NG tube to teach her what a full belly was and transition her to a more “normal” feeding schedule and while we really chafed under the restrictions initially (feeding schedules, boo!), it has been really good for her overall and we allowed her to let her adjust it to her natural rhythms once she was over that initial hump. She eats roughly 3 ounces of fortified breastmilk every 2.5 hours during the day and then at night we set an alarm to give her a couple of “dream feeds” every 4 hours (earlier, if she stirs on her own), which she willingly takes. As a result, she now spends time playing before and after her bottles and lets us know when she wants to nap and sleeps for decent chunks of time! She has routines and preferences beyond “I’M STARVING, FEED ME!” Yay!

A lot of things have changed across the board. We went from nursing to pumping/bottles feeding with fortified breast milk with a couple of comfort nursings here and there (but we have to keep them short and limited because she has to work so hard at it and will get sweaty and fatigued). While I do miss nursing, I know this is what is best for her. We went from feeding on (constant) demand to a semi-scheduled feeding routine that we have to keep notes on. We went from cloth diapers to disposables (because with the formula fortification it requires an extra step to cleaning dirty diapers that I don’t currently have time for) that we are weighing for ins/outs. We went from nursing on and off all night to setting alarms to heat up milk and give bottles (oh my gosh, nursing is so much easier, especially in the middle of the night!). Her bottles are finicky so we have to watch the nipple alignment the whole time she is eating. We’ve also added in a strict medication schedule that we have alarms set for; 9am, 1pm, 5pm, 9pm; so between meds and night feeds we are waking up (REALLY waking up) three times a night now. YAWN! We’ll also be going to weight checks frequently; every couple of days at the birth center, once a week at the pediatrician, and once every two weeks at the cardiologist (where she’ll also be getting chest x-rays to keep an eye on her lungs and heart). It is very, very different, but it is what she needs so that’s what we’re doing!

Another thing that is different is that we now have to be very careful with Josie’s health and treat her like an immunosuppresed baby because her heart will not handle illness very well. We have to avoid crowded places and people who are or MIGHT be sick. So if you are sick or might be sick or have been around people who have been sick, PLEASE keep your distance. “I think it is just allergies.” is not sufficient in this case. We will likely be avoiding large gatherings (even family!) and places where there are kiddos, just because of the high rate of infection and snotty noses and slobbery hands. It won’t be easy, but again, it is what is best for Josie so it is what we will do! We have to keep this sweet baby healthy and growing so she’ll be ready for surgery when the time comes!

IMG_8504_filtered_e copy

Look who is three months old today!


PS: If you have any exclusive pumping tips, please share! It is going to be tricky pumping, feeding, and taking care of Josie when Josh goes back to work so maximum output in fewer pump sessions is our goal.

Josie’s Heart

Last Friday, Josie had her first visit with the pediatrician. Her first couple of check-ups were done by our midwives, first at our house and then at the birth center, so we didn’t need to the see the pediatrician until it was time for vaccinations. While at the appointment, the doctor heard a heart murmur. At first she said that it sounded innocent, but as she listened she decided to order an echocardiogram because Josie has also been having difficulty feeding and gaining weight. On Tuesday, Josh and I took her for her echo and Josie was so well-behaved for it, but after the test the tech told me, “If you don’t hear from your pediatrician in the next couple of hours, go ahead and call her.” I’ve been through a billion tests with K and NEVER been told that, so when we got in the car I told Josh I didn’t think the results were going to be good. We headed back towards home and stopped at Sonic to grab lunch and as soon as we pulled in, the pediatrician called and said we needed to go to the ER immediately and would most likely be admitted to cardiology. Josie has a large VSD (hole in her heart) with significant shunting (blood going the wrong direction, making her heart work way too hard). So we went by the house to grab a few things and headed to the hospital.

Once here, we were taken back pretty quickly and she had an EKG and chest x-ray done, and had labs drawn and IV placement was attempted. Cardiology came down and explained her heart defect, and that her heart is also enlarged and there was fluid on her lungs from the excessive work her heart had been doing (congestive heart failure). They went over the symptoms of her VSD: constantly feeding, falling asleep quickly when eating but not staying asleep very long before resuming feeding, sweating while feeding, fast breathing, difficulty growing and gaining appropriate weight. She had all of them, which we knew from Googling them after hearing about her murmur, so it wasn’t a complete surprise, but the symptoms also have totally innocent explanations, too. People say that newborns nurse a lot and not to pay attention to the interval between feeds. Babies get sleepy when eating. Sometimes babies get sweaty when nursing from the shared body heat. Babies breathe quicker than big people. She has had some latching difficulties from birth, so we thought the weight gain issues were due to poor milk transfer. But nope. She’s had a large hole in her heart all along, making it impossible for her to feed well enough to get full, thus the constant feeding. And the sweating. And the drowsiness. And the lack of actual naps. And the lack of weight gain. And the signs of inefficient milk transfer. It was like she was always running a marathon and trying to eat on top of that. So we are in the hospital now, trying to get her to gain weight. If she can start gaining weight, they are going to let us go home and let her continue to grow and get stronger for a couple of months before going in to close the hole surgically. If she can’t start gaining, they’ll have to repair it sooner. Right now she needs a feeding tube to get in her feeds (they let her eat for 15 minutes and whatever she hasn’t finished at that point goes in her NG tube), but they hope she will gain strength and be able to take them orally before we go home. They’ve given her meds to draw the fluid build-up out of her lungs and they are much better, but she is still struggling a lot with feeding. She isn’t supposed to nurse anymore for now because it takes more work than a bottle feed and they can’t track her calories and intake, so I’m pumping and they are fortifying my milk to make it more calories per ounce. We are SO thankful we found a bottle she can take recently, I can’t imagine trying to do all that trial and error while we are inpatient! She also likes her binky a lot more now, probably because she misses nursing, so we are thankful she’s accepting that substitute.

I know people are curious about why this wasn’t discovered earlier. In part, it may be due to the delayed initial pediatrician visit, but larger holes are quieter and more difficult to detect…and often these are missed even at pediatrician visits until 6 or 8 weeks of life. If she had been born in the hospital, maybe they would have caught it, but maybe not. She passed her screening test for congenital heart defects at birth because this type of hole does not effect oxygenation levels. I don’t know that it would have been caught had we done things differently, but we are still SO thankful for her gentle entrance into the world and the months we got to spend at home before diving into all of this and wouldn’t change any of it. The symptoms she’s had since birth could also have been attributed to other things, so the detection of the murmur and the echo were the keys to catching it and thankfully it was caught. Hopefully she will start showing some gains and we will get to go home again in a few days! People have also asked about the big kids. They are handling it well. N has been a big help and now he’s spending a week or so with his best friend, and K is with my mom and had VBS and a couple other things to distract her this week. It will be very nice when we are all home together again! We just need our little Jo to grow so that can happen.

11666086_10152868051230800_3256392848550475708_n

Year One

K and I finished her first year of homeschooling a few weeks ago and I think it was a success! Although her health was pretty good for the most part, she still had enough issues that it made me very thankful not to have to wake her up early and shoo her out the door when she wasn’t feeling her best. She had a nasty respiratory infection back in the fall, a lot of GI issues during the winter, and bouts of pain that seemed to come and go…but being out of school meant that she did not really acquire any contagious infections this year which was awesome! For her health, homeschooling was definitely a win!

 I feel like she learned a lot this year, too. The hardest parts were long division and two digit multiplication, but we survived! Otherwise, it was pretty smooth sailing. She is such a smart kid and strong reader, so that really made most of school very easy for her. It also made it possible for her to continue working when I was busy with Josephine at the end of the year.

I do wish we had been able to do more out of the house/social activities this year, like museum classes and field trips, but with me being pregnant (nausea and vomiting in the fall/due in the spring), it was hard to sign up for much! She is such a social kid that I know she would love interacting with a wider world of people, so hopefully next year we will be able to do a bit more in that arena. We did a few things this year; farm field trip, the Nutcracker, Valentine’s Party with other homeschooling friends, but there are so many available opportunities for her to explore!

I interviewed K about her year and these were her answers:

Favorite Continent(s): Asia and Australia

Favorite Ecosystem: Tundra

Favorite Subject: Reading

Biggest Challenge: Math/2 digit multiplication

Favorite Part of Science: Order Lepidoptera in Flying Creatures

Favorite Part of Bible: Windows on the World (a study of differen cultures/religions)

Favorite Part of Math: Nothing/Addition, if forced to pick something

Favorite Part of Geography: Pretend travels

Favorite Part of Art: Designing a house

Favorite Part of LA/Spelling: Adjectives

What are you looking forward to next year: Art and Egypt/the pyramids

This year our main curriculum was geography centered, next year it will be focused on early history, up to the Greeks. We are going to keep using Teaching Textbooks for math and Apologia for extra science (she picked Chemistry and Physics, eek!), but I think we may try something new for LA. Overall, I’m really pleased with how our year went, even though my pregnancy and Josephine’s arrival complicated things just a bit, and we are looking forward to next year…after we enjoy a nice long lazy summer!