Day 14

Today is day fourteen for Everly in the hospital and I think she, Brad and I are all beyond exhausted.  Everly’s progress over the past week has been stagnant, and the ‘treatment plan’ if you will, has become experimental.  The neonatologists agreed to try letting me room-in here at the hospital in a labor and delivery room across from the NICU to test whether me providing consistency for her 24/7 will help her.   And because after I was discharged and we found the six nights we spent at home with her still in the NICU to be emotionally nauseating, I was all too happy to move back into the hospital.  Unfortunately, we’re now on day three of this test and don’t seem to be seeing a difference in her eating.  Yesterday they began yet another test, removing her feeding tube to see if without artificially filling her stomach, her hunger levels would increase and motivate her to eat more.  We’ve not seen success of that test either and she instead has lost more weight. According to the physicians’ caloric calculations, Evie needs to be eating 70 CC’s eight times a day from her bottle to begin gaining weight.   Right now she’s averaging about 35 and hasn’t been able to increase her intake in the past week. 

The crux of the problem seems to be that Everly has to work SO much harder than a normal baby just to eat and breathe therefore tiring very easily, a catch-22 since that extra effort means she’s burning more calories and therefore needs more calories than an average baby. She tries to hard to suck on the special needs Haberman bottle, but cannot create any suction due the lack of any hard palate and the massive cleft in her soft palate.  Everly also tries to swallow all the milk we push into her mouth, but easily becomes overwhelmed and panics as her recessed tongue far back in her throat likely makes her feel like she’s choking. It kills us to watch her struggling to eat, trying to clear fluids from her cleft and often becoming so overwhelmed that her sternum starts shaking and her lips take on a shade of blue.  Seeing how hard this little girl works just to do normal things breaks my heart while at the same time making me already so proud of the fight she has within. 

We're extremely thankful for the sweet friends and family that have gone out of their way to support us with love via phone calls, texts, food, and prayer. Though we've been slow to respond, please know how much we value your encouragement.

 

Praises:
Everly has continued to maintain her airway and the physicians think she’s most likely in the clear now for major respiratory issues since she’s made it this far without obstruction.   We also are grateful for the encouraging meeting we had with a pediatric plastic surgeon, who gave us hope for her long-term outlook once we make it through this first year or two.

Prayer:
We’re feeling overwhelmingly discouraged but know we need to live patient and trusting in this circumstance.   Too, we ask for prayer for wisdom for the neonatologists, nurses, and ourselves for how to best help Everly.   Most importantly though, we are simply praying incessantly for Everly to learn to eat, grow and thrive.

Evie is so tuckered out after trying to eat!