Day 4 Update

Charlotte has been doing amazing.  Her incision looks great and the surgeons have been really happy with the progress.  I don't know if it was mentioned in previous posts but the surgeon who did her repair tried to give her a belly button so I cannot wait to see what that will look like as she continues to heal! Her breathing has been amazing and she continues to breath over the vent even at the lowest setting.  She has been doing so well that they have decided around noon to take her off the vent.  Brittany was overwhelmed with emotions as this occurred.  The doctor said this will be a lot like being taught to swim by jumping in the pool, there isn't a good way to see how she'll handle being off the ventilator until it is removed.

Once the ventilator was removed, Charlotte cried softly and tried breathing, and breathing hard at that, but struggled to pull in full breaths since her vocal cords have been inflamed due to the ventilator intubation. They provided some gaseous anti-inflammatory similar to an asthma inhaler, but the medication is designed to work on the upper respiratory track. She cried stronger and louder than before, but still struggled to pull in full breaths. She was put on a high flow cannula to assist her breathing, and increased the flow rate until she breathed easier. The neonatolgist preferred to try the high flow since it is gentler than CPAP, but warned that we may have to move to CPAP if the high flow doesn't provide sufficient assistance.

Without the ventilator, Charlotte can now let us know how unhappy she is when she's cranky with squeaky little cries. She fusses more since she goes longer and longer between morphine doses (up to 24 hours). Each morphine dose is also half the volume of her original post-surgery dosage. Keeping her calm and asleep is a bit of a challenge since she isn't sedated. We use a small toy tied from a blanket to shield her eyes, and keep it as dark as possible for her. Charlotte takes after both parents: she is stubborn and fiesty. She wiggles and waves her arms when she's upset, breaking free of a pseudo swaddle we've tried with a strap of blanket across her chest and tucked into her crib. When the blanket strap holds her arms tightly, she calms down, fusses less, and sleeps.

Blood gasses were drawn after an hour after removing the ventilator, and the results were favorable. So far she has been resting well after afternoon excitement. Just before her 1600 vitals check, diaper change, and oral care, Brittany was able to take Charlottes footprints and print them on top of a passage in Psalms inside Charlotte's first Bible.

We spoke to the pediatric surgeon who indicated that the bowel is sounding good and the skin tightness around the torso and belly is softening. The inflammation from surgery is reducing with her continued recovery. Next big step from the surgery team will be to decide when to introduce feeding, which may begin within the next few days. Charlotte continues to poop, another positive indication of bowel function, so hopefully these are all good signs that she's taking her next forward steps.

With any luck, Brittany or I may be able to hold her this evening or tomorrow morning. We're very excited, but I'm gonna have to let momma hold baby Charlotte first.

~ Christopher and Brittany