Poppy is doing absolutely amazing!! Thank you Jesus!! It is ALL because of You!! She just continues to thrive-it is beyond words amazing, humbling…unbelievable almost!! But we’ll take it!! Just in the past few weeks, it seems she’s really turned a corner developmentally!! She coos, and smiles all the time 🙂 She also reaches up and is starting to bring her fingers to her mouth!! She’s even started gaining strength in her legs, as now she will do little mini squats when she’s held up!!! She still isn’t a fan of tummy time but loves facing out in the baby Bjorn, so her neck is getting stronger. She’s on a pretty good sleep schedule, and as always, loves loves her baths! 😉 She is doing awesome 🙂 Praise God!!
At Poppy’s last two cardiology appointments, the doctors have been beyond PLEASED with how she is doing!! Thank you Jesus! She is now being fed, still through her feeding tube into her tummy, but now is on to bolus feeding, meaning she is fed more like meals instead of a trickle all of the time, and she is doing awesome at it!! Right now, it takes 1.5hrs to have her ‘meal’ and the goal will be for her to eventually take it over 30minutes. She will get there 🙂 We are still working on her oral desensitization, along with puree and taking a little formula by Haberman bottle. Although, honestly, feeding is day to day. Some days are so encouraging-she takes 3-5 spoons of puree when offered and will suck a few times on her bottle. But other days, she can’t tolerate any of it without gagging and threatening to vomit 😦 It’s been challenging! Who would have thought feeding could be such a hurdle…we just take each day one at a time-she will get there in God’s time. She really is doing great.
We saw her OT yesterday, and are trying to focus on getting her to like having her mouth touched and things in her mouth. She had a great appointment! Also, on a side note, I just have to say, we have the BEST OT Seattle Children’s has to offer-we are so so blessed to be able to work with her!! She meets Poppy where she is at, and has NEVER once told us where Poppy is at on the ‘charts,’ and it has made the world of difference in how we work with her. Thank you Jesus for fabulous care!! The transplant team was able to take her off of 3 meds (captopril, valgancyclovir, and diuril), and her hydromorphone wean is now down to .05ml every 8 hours!! We came home on .45ml every 4 hours!! She now only has meds at 6am, 2pm, 6pm, and 10pm!! Her meds now are: cyclosporine, cellcept/MMF, hydromorphone, verapamil, keppra, magnesium, zantac, culurelle, and bactrim. She is doing awesome!! There is even talk of being discharged home to MT sometime soon!!! Thank you thank you Jesus!!! 🙂
From the beginning, we have prayed for direction..and God has surely shown his faithfulness through provision and so much more. “As God guides, God provides,” has become our reality and really what we live by. With Poppy’s conditions, we have honestly been toying around with the idea of just staying in the Seattle area, due to her complex issues. Thinking, ‘is it silly to go back to MT? Dr. Hardy is really our only resource there…there are no neurosurgeons there, not even a machine to reprogram her shunts should she need them adjusted…’ We kept asking the doctors, ‘so how do people who live in MT do this? Surely there has to be people who do?’ The answer was always, yes! Really the only thing we would be gaining by staying is a sense of well-being knowing that we are close should she need to go in. We have honestly been praying about this, since I can remember…
One day at cardiology clinic, one of the transplant coordinators told me I had to meet another heart transplant mom. She was from Alaska and in that day with 14 month old son. I thought, that would be awesome! She can tell me how it is being remote and doctoring in Seattle. By the way, I absolutely love the tight knit community that is heart transplant….The coordinators, doctors, and other families really have a close bond-it’s truly a blessing. Poppy and I walk into their room and get to meet she and her son. After a few minutes of small talk about our babies, I start asking her my questions…’how is it?’ ‘Poppy has 2 shunts in addition to her heart transplant, and we are really not sure about moving back to MT because of the lack of resources.’ I remember a few of the first words out of her mouth were, ‘ don’t be a slave again to fear! You know that rejection won’t come on over night-that it’s more of a trend over time. God’s got it all in His hands! Don’t worry! He’s got it! ‘ Wow, I thought, it’s like I’m talking to myself! Lol! She’s right on! God has brought us this far, why would I even allow myself to question that, or worry?! Anyway, it was no coincidence we got to meet that day 😉 God is so good all of the time. What a comfort to be able to rest in that, once again. This really put things into perspective, and again, really granted us a sense of peace to just want to obey God’s will for us…praying each day that He would make it loud and clear! 😉
A few weeks ago, I asked about MT. My hope was to maybe make it home for Christmas…Dr. Law went into what that would mean for us as a family. The frequent monthly trips to Seattle, going to the ER or pediatrician if something should come up, seeing Dr. Hardy in Missoula regularly, and even went on to say how being more remote can really play a part in how willing we become to jump in the car during a blizzard to get a rash checked out for example..human nature makes us less likely to do it, or downplay the potential of it…at this point in the conversation, I got to thinking, ‘is he going to say we can never go back?!’ 😦 When he said, ‘I could really see her going home next month..’ I’m sure my face said it all-utter shock and a cheeky grin I just cannot wipe off my face!!! I then said, ‘we will do whatever is recommended, whatever is best for her. If you think she would benefit more from staying here longer, then we will do it-you guys do this all of the time, so really, we want to do whatever you think would be best.’ He said, and I quote, ‘she looks beautiful!’ I mean ?!?!! Those words coming from Dr. Law mean A LOT! Sooo…..needless to say, after this appointment, we find ourselves jumping for joy-we probably get to go home before Christmas!!! And at the same time, we are on our knees fervently praying for direction…where does God have us for this next season?
After much prayer, consideration, and doors opened, it really seems that God has us back in my hometown of Conrad for the time being. We are soo looking forward to being back home, surrounded by family, especially for Crosby’s 2nd birthday and Christmas time!! To be able to have the support we need, meanwhile allowing Brad to finish up his masters is truly a relief and blessing. We are still in quarantine-meaning Poppy really can’t be in public places or around anyone who has even a hint of illness. Even a cold has the potential to send her inpatient, and if she has to go inpatient, that means Seattle. And with flu season coming up, it’s just really crucial that we stay well. So needless to say, we will be staying in for the most part, except for appointments. It’s one of the immediate realities upon her discharge from inpatient that we’ve been living since then-it’s like we have purell all over the house and literally use it EVERY time we touch her!! I want to be sure everyone understands why we are laying low for a while-it’s because we have to 😦
Right now, Seattle and Montana are working closely together to ensure Poppy gets all of the services she needs-it’s pretty amazing the professional coordination that takes place! I am definitely feeling very blessed to not have to do it all myself. It is truly unbelievable that this is even being talked about, let alone plans being in the works!!!! We are beyond excited to just breathe in the sweet MT air. It’s just home, and we can’t wait to be there 🙂 Thank you Jesus for this miraculous journey that you have us on. It is so incredibly humbling to be in it, seeing You at work each and every day!! Thank you all for your continued love and prayers-can you even believe it?! Home-home! Montana home!!! 🙂 Thank you Jesus!! 🙂
One of Brad’s friends from college, Johanna Wilbanks, lives around here and offered to take our pictures!! They turned out beautifully!! Thanks again, Johanna!! We will forever cherish these precious pics 🙂