Paisley Mae is home, but not out of the woods.
Kate brings in another update (with her photos):
She’s been HOME for 8 days! We are so thankful to have her with us where she belongs. It’s evident she loves having the consistency of mommy & daddy, bright colors in her room, fresh air, sun, stroller rides, swings, music, snuggles in bed & all the ‘normal’ things she didn’t experience during her first weeks of life in hospital.
Although we have brought her home with many of the same challenges she faced in NICU, we truly believe she will thrive at home. Her time at home has been so special, and we are just soaking up every second! As special as it has been to have her home with us, it has also brought some big challenges. Paisley continues to struggle with her feeding/nutrition. Although the g-tube surgery allowed her to come home, it is more or less a band-aid rather than a cure for her. It allows us to feed her through tube whatever she will not take by mouth, but it doesn’t solve why she won’t eat by mouth or why she gets so fatigued when she does mouth feed [the most speculated culprit is her heart].
The doctors never could find the WHY behind this and many of the other challenges Paisley faced. So, we are left just continually trying new strategies & approaches to getting her to eat, keep it down & gain weight/strength. It’s been a bit overwhelming doing this without the daily support, help & expertise of the doctors/nurses we had worked with in the NICU.
We know we will never be given more than we can handle, though, and we are so very aware of God’s amazing grace! Aside from working with her as much as possible at home, Paisley will also be getting outpatient care. She will be doing feeding therapy 2x a week + physical therapy 2x a week at CHOC + nurses & therapists will come to our home periodically to work with her. She will also be closely monitored through visits to her pediatrician, cardiologist, gastroenterologist & geneticist. This season of life may just feel like one long doctor visit:)! And that’s ok – we are just so thankful for the great doctors she has, that we are privileged enough to be able to see doctors & get her great care. She’s in great hands!
Please pray with us for these things:
1. Paisley to begin finishing all feeds [would love to see the g-tube removed in a short amount of time!]
2. Paisley to keep all her feeds down – no more vomiting/losing oxygen/choking [especially in car when we can’t get to her as quickly!]
3. Paisley to steadily gain weight, strength & stamina
4. Paisley to grow & develop perfectly in every way
5. Paisley to benefit greatly from all therapy & treatment
6. Continued healing of Paisley’s heart, lungs & kidney
7. Wisdom for us in making decisions about her treatment – which meds to have her on, what feeding strategies to try, which doctors to see, etc …
Thank you for praying & believing with us! We love having our baby girl home & seeing her healing unfold every day. God has been so good to us & continues to carry us through this season in such a jaw-dropping kind of way! To Him be ALL the glory for the amazing miracles He’s done in Paisley! We continue to watch expectantly for Him to complete His great work in her…
Find @katie_ewing on Instagram for instant updates on Paisley Mae.