Hi friends! It’s been a long time since we’ve updated things here. We’re trying to get used to this new normal of life with 3 kids, Zachery back to work (from home), doctor appointments, and therapies!
Thankfully, it seems like things are settling down for the time being and we’re getting into the swing of things. So, sitting down to write this is long overdue!
Shiloh Joy is amazing. She’s a miracle. Day to day isn’t always easy, but we can’t imagine our life without her in it!
Shiloh had her G tube placed at the end of December. This surgery was able to be done at Children’s Northwest location (PRAISE JESUS), which is about 20 minutes from home. If you don’t know, a G-tube is a more permanent feeding tube that is surgically placed and goes right into her belly. The surgery was smooth and recovery from that was pretty straightforward for Shiloh, but after surgery (a combination of not being able to eat for 17 hours, and her body being in a bit of shock) her sodium levels were elevated and it took several days to bring them back into range. Testing sodium requires frequent blood draws, and sweet Shiloh’s veins just wouldn’t cooperate. Several times it took over an hour of multiple nurses, lab techs, and ER nurses trying to find a vein big enough to draw the little blood they needed. It was really rough to say the least. We did a lot of research trying to understand her DI better (lots of consulting our HPE Facebook group), and eventually the doctors listened to our suggestions on treatment for her sodium (more of a compromise) and her levels dropped to where they should be. Then they thought that Shiloh had a possible blood infection after they tested because of a slight fever, more googling of what that could mean (we’re getting pretty good at sifting through information on google to learn what we’re looking for!), it was really scary. *This was also over our 6th wedding anniversary, and three days before Christmas.* The blood sample seems to have been a false positive, maybe contaminated in the lab, maybe related to her IV that had been in for almost a week at that point. We prayed and prayed and prayed, largely for Shiloh to be strong and healthy, but also that God would show his grace and get us home before Christmas.
God was very gracious to us. Shiloh recovered well and we were able discharged on Christmas Eve, so thankful to spend Shiloh’s first Christmas at home as a family of 5!
God’s so good and gracious to us over and over again, his grace prevails as we have learned so many new things in past 9 months of learning about Shiloh. And while we very much disliked the time we spent in the hospital in December (especially feeling like part of it was unnecessary), we can see how the Lord used it. Zachery and I learned so much more about our daughter; more about DI, more about possible complications related to Holoprosencephaly, more about hospital systems, more about how to advocate for her. And once again, our “village” of prayer warriors lifted Shiloh Joy up to the Father, asking him for grace and to show himself to us.
The beginning of January was us figuring out a new system with Shiloh’s new feeding method and the different supplies that comes with it. We can’t believe how normal G-tube feeds are now, even leaving the hospital it felt a bit overwhelming. We’ve had lots of appointments and it felt like we were at Children’s at least every other day. Shiloh is followed by lots of specialists (PCP, Endocrinology, Neurology, Speech Therapy, and Physical Therapy are the main ones), but we’ve finally gotten past those and life feels a lot less overwhelming from a medical standpoint!
One of our appointments on a particularly busy week was with the Plastic Surgery team to discuss cleft lip/palate repair. After a weekend of talking it over and praying about it, we feel lots of peace from the Holy Spirit that we shouldn’t pursue this surgery for Shiloh right now (maybe in the future). Knowing a little more of complications from having Gtube surgery, we don’t want to rush into anything that could be dangerous for Shiloh, or impact her breathing (as a cleft repair likely would), or land ourselves in the hospital for an extended period (especially with COVID restrictions keeping anyone from getting to see her, siblings included!).
Since a couple weeks of marathon appointments in January (which is kind of draining for everybody!), things have been pretty steady at home. Shiloh has physical therapy and speech therapy once a week, she works really hard at these appointments and we’re so proud of her. The goals with therapy are to provide early intervention to help her meet milestones in her own timing! She practices head and neck control, a little bit of rolling (assisted), neck rotation (turning her head both ways), and sidelying in physical therapy. In speech therapy we practice eating by mouth a little bit with a dropper or with paci dips (dipping the paci in milk) not much volume at all, but good practice for her, and mouth exercises (doing gum and cheek massage).
We’re getting to see more and more of her personality, and it’s amazing. She smiles at us, and it’s the biggest, sweetest wide grin. She’s doing more and more sound play making sounds back at us like “talking.” She is very vocal about things she doesn’t like, such as baths, diaper changes, or changing her clothes (basically, don’t mess with her!). She also is very vocal with her therapies when she’s tired of working so hard, or straight up goes to sleep if she’s done participating! She’s so funny!
Prayer Requests: that she continues not to have seizures, for her reflux (she’s having trouble keeping down feeds, as in she throws up a lot, all the time, it’s a full time job just feeding her and keeping her cleaned up) and growth, for her development, for patience for Zachery and I and for energy to do all the things that always seem to need to happen at that minute! For reminders from the Lord that he’s with us, it’s all too easy to get overwhelmed and miss his presence.
Praises: that she continues to be seizure-free! That she has started to smile at us! That the Lord is keeping Shiloh healthy and sustaining her. That Shiloh’s a pretty good little sleeper at night (she rarely naps during the day, and doesn’t appreciate being set down, but we’re so thankful that she sleeps well at night!).
Other family updates: Hadley started dance classes in January, it’s every bit as adorable as one would expect. Paxton suddenly seems like a big kid, he’s started talking so much more an it’s hilarious to hear his thoughts and plans!
We’re all just hanging in there. Learning so much, finding ourselves more busy than ever, hoping in Jesus to keep us afloat!
Thanks for being patient with us! We’re so thankful for all the ways people are praying for us and supporting us. It means the world!
Love, the Linns