Healing Journey

It's been a rough couple days over here in the NICU. As you know Grace's surgery went well, but the healing journey thus far has been tough to say the least. Mostly for Grace but for us as parents to watch her go through it as well. It's definitely not how Sam thought he would be spending his first Father's Day, but he is so thankful for his daughter life and is such a good Dad to her! We made the most of it, by sitting by her bed side and then going out for a celebratory lunch when she seemed settled.

Happy Father's Day

Grace has HATED being intubated again (which we were warned about) and often bares down in the tube causing her heart rate and oxygen saturation to plummet. Thankful she usually comes back up on her own, but the first day post op the nurse had to threaten Grace with escalation if she didn't stop (ex. "If you don't stop this I'm gonna have to start bagging you and hit the button"). Thankfully she listened both times and no codes were needed for additional team support (but we were close with both episodes being almost 5 minutes). This was very hard to watch, and definitely put Sam and I into high alert mode like our early days. We forgot what it felt like to stand helplessly by and only be able to watch our daughter from afar; it causes next level exhaustion and emotions. We have to keep reminding ourselves that this is just part of her journey and the next step she needed to get her home!

She also needed a catheter because she wasn't peeing and has also become extremely puffy. It appears she is retaining a lot of fluid, which is normal post op, but she does need to start peeing it out. Thankfully as of today she has started to and they were able to remove the catheter. She is still quite endemic, but it has reduces slightly with her getting a Lasix (diuretic) dose three nights in a row.

Unfortunately we also got some news Monday morning that they think she may have an infection based on the fact that she just had surgery and her White Blood Count was lower then normal specifically her Neutrophils. So Monday was an extremely busy day with Grace getting repeat blood drawn for levels and for a CBC and culture, chest X-ray, urine sample, and Echo. She also got her routine head ultrasound done and a Ommaya Tap. They had skipped two days (the weekend) so she could heal, which meant her head was quite full. They made sure to send her CSF away for testing and cultures. As a precaution they also started her on 3 different types of antibiotics that cover all the bases. And now we just have to wait.

The results for the echo and chest X-ray came back with nothing significant to report on other then general preemie issues. The head ultrasound showed very full ventricles (which the daily taps that have resumed should help). Everything else came back relatively clear as well, so it's just the cultures we are waiting for to (for sure) rule out the infection.

Prayer Requests:

• That there is no infection. Our poor girl (and her momma) can't handle another one!

• That she can pass her breathing trial and get extubated.

• Patience as she heals

• That she will poop soon!

UPDATE:

• After 24 hours no culture has grown, so they have stopped all antibiotics and told us she does not have an infection.

• Grace was extubated this afternoon and put onto High-flow. While she has a lot of secretions in her lungs from the tube irritation, she is doing very well!

• She pooped a tiny bit, which means she will get a bit of milk tomorrow through an NG Tube.

Praise the Lord! Thank you for answered prayers and continuing to carry Grace 🙏🏼