Miracles Every Day!
- kathrynsubas
- May 23, 2025
- 3 min read
Updated: May 24, 2025
Spring is in the air, birds are chirping, new life is sprouting, and the sun is shining! God shows his faithfulness even in the changing of the seasons. And He shows His faithfulness by walking with us in the routine days and carrying us through the hardest days.
It's been a minute since I updated. Since my last blog we have had a couple of prayers answered, mainly about infections and such. We got MRI results back and Infectious Diseases has given her the all clear for her CONS Meningitis! We were able to finally stop her vancomycin (that she has been on for 8 weeks). Multiple CSF samples have also not grown a culture, so ID has cleared her for the false positive for a new infection (meaning we can stop the secondary antibiotic). Praise God! Grace's ROP (Retinopathy of Prematurity) is remaining stable and in some ways improving slightly as she gets older and grows. The doctors continue to monitor this weekly, but we are so thankful to hear that it hasn't gotten worse.
Grace has also started producing her own hemoglobin which makes her quite sleepy. She did, however, need to receive her 9th blood transfusion since her body wasn't able to produce it at a rate fast enough to keep up with all the blood draws that happen weekly/daily. She also continues to receive daily taps as they need to remove the new CSF that her brain makes daily. It appears her brain has not started to absorb it, so as of now a permanent shunt will be required. This will drain into her stomach, so it will happen after her intestines are reattached. Lately she has had a number of bratty's after being tapped due to the release of pressure in her brain. These can be a bit stressful for us to witness, but we know it's often part of the process.
She has also gone up on her feeds a little bit and is now at 14 ml every two hours. As of yesterday her food is also now getting fortified as her weight has remained stagnant the past few days. Unfortunately this and the loperamide don't help with her reflux, but if I hold her a bit more upright during feeds it seems to help. She also gets her feed spread out over 1 hour to give her stomach more time to digest. She still continues to dump quite a bit from her stoma, so we hope the reattachment surgery can happen soon! They will need to do a Loopogram first and then book the surgery. We were told almost two weeks ago that she would be having it soon, but so far it has not happened. We are definitely looking forward to this surgery though as it will mean no more dumping or multiple painful bag changes!
Grace is currently at 2.2 Kilograms which is so amazing to see! She now fits shrunken preemie clothes much better and the Grandma's and Aunt makes sure she is clothed in the cutest outfits 😂 Our families visit about once a week, so Grace has gotten lots of visitors! Nat also got to hold Grace for the first time which was very special!
Prayer Requests:
That her stomach output would decrease, so that she can remain hydrated and absorb the nutrients she needs to grow.
For the Loopogram to happen sooner rather then later and that it shows no blockages in her intestines.
For reattachment surgery to be approved and a time slot to be found in the O.R, as it is technically an elective surgery so it isn't a priority.
That her brain remains stable with all the taps.
That we would continue to trust God and His plan, even when we don't understand it from a human perspective.
Thankfulness for loved ones and the out pouring of prayers and support!
Dear friends who have recently had babies (there were 4 of us pregnant at the same time, and we have now all had our babies)!
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