Today was uneventful for Ella which is good.
Her CPAP remains at a pressure of 5 and at 35% oxygen.
We have not talked to Dr. Kays in several days so we are not sure what the plan is for how long Ella will remain on CPAP. Our intuition is that she needs a bit longer. When she is asleep, her saturations are 100 and stats look great. When she is awake and alert, she seems like she works a bit harder to breathe and her saturations are mid-90s. To us, this is a sign that she needs more time to gain strength.
She was awake a lot of the day and is still taking to her binky. She has spit up once today which is not bad and means that she is still tolerating the meds and formula going directly into her belly.
There is talk about possibly moving Ella out of her private room, out into the open area. The reason is two-fold: to get us more mentally prepared for moving to the NICU 2, which is very different and jam packed with rows of babies. Also, to give Ella more things to look at during the day and more interaction from people passing by (this is more appropriate for her developmentally at this stage). We would love to keep the private room, but understand that this could happen any day.
We heard that the renal department came by to assess her kidneys and did not find anything that they are concerned about right now – – praise God.
The occupational therapist should be visiting Ella sometime this week to do an assessment of where she is developmentally and what type of therapies Ella might need when she returns home. Also, the occupational therapist’s goal is to train us to take care of Ella, from therapies, feedings, medicines, developmental challenges, physical therapy, etc. We are looking forward to what she has to say and working with her over the next several weeks.
Par has been successful at remaining off of ECMO. If he can remain stable over the next couple of days, Dr. Kays might look to do his repair surgery. Please continue to keep him in your prayers.
Also, please pray for Ella to gain strength over the next several days. Her nose is a bit raw and irritated from the CPAP. So, please pray for her to continue to tolerate the CPAP as she has been doing.
Finally, please pray for Dr. Kays to have wisdom on when to take her off CPAP. We would prefer for Ella to stay on CPAP as long as needed to permanently move to the nose cannula rather than go back and forth, since it sets Ella back on her progress.
Thanks for joining us on our knees throughout this time.