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

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

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

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

IMG_8775_filtered_e copy IMG_8667

Advertisements