01.03 Evening Update

(sorry this wasn't really posted in the evening... i fell asleep before posting this!)

Our current plan of attack, is one night at home, one night at Le Bonheur. So far, we're surviving ok on this schedule but we're still praying that either Penny gets moved back to The Pavilion or Lydia gets moved to Le Bonheur. We're praying desperately that Penny's the one that gets moved mostly because that means that she will have downgraded on the severity of the case. Whatever way this continues, we are still so deeply grateful for these two hospitals and the amazing NICU's and NICU teams that both of them have.

Update
Penny
Today, thankfully, was uneventful in the grand scheme of things. Last night with Penny was an uninterrupted, bells and whistle free evening, no bradys, no apneas, the bed didn't even get thirsty! (the Giraffe beds have a water tank for the built in humidifier and makes a loud sound when it needs to be refilled aka is thirsty). The work that she was having done wasn't as pain inducing as the nights past, so that allowed for parents and child alike to have some decent rest. The poor little Penny, though, was quite worn out from the massive swing of amazingly high to frightening low glucose levels, so she was much quieter than any of her recent days. It was sad not hearing her little cries when the nurses would come in and rearrange things or take blood. Her little heels look like strawberries, the little needle holes from all of her blood drawings looking like the seeds. All day today was a balancing game for the doctor attending. The only fluids she was getting today was a IV bag of d10 (dextrose) and the good ole momma's milk. The IV was giving her a balanced amount of sugar to help counter the insulin shot she had been given. Her bilirubin count was high again so she had to go back on a Bilibed as well as a "bluelight special." lamp above her. We also got a visit from a third cardiologist, Dr. Alpert, who concurred with the other two doctors that the road signs for a coarct were not there. They were specifically looking for an aortic shelf in part of the aorta (the descending part, i believe?!) which would look like the waist of an hour glass if you were to visualize it. They are not seeing this currently but there is still the closing of the PDA which they are concerned about. If this does not begin to work itself out and the PDA, being wide open, continues to have the diastolic runoff it will begin to get worse and they will need to do surgery to correct it. (http://www.nlm.nih.gov/medlineplus/ency/presentations/100012_1.htm) We just made a call in to check on her and the nurse said that she had two relatively severe SAT drops (O2 levels) and her glucose levels were around the 50's. Balancing act!

Lydia

We are continuing to enjoy the time we get in Kangaroo care with Lydia. It's been amazing to get to hold one of the girls finally and it helps make this whole process really feel like we have two children! Lydia just recently has started to show certain signs that her body is being affected by her PDA still being open. (i.e. unusual bradys and O2 sat drops) We are praying that her PDA will close on it's own and that another dose of the PDA medicine or surgery won't be necessary. If she doesn't close the PDA on her own then she might have bought her trip to Le Bonheur because it will require the same surgery that Penny might have to have to close the PDA. That would be a sad but happy day because we do love the team at The Pavilion, a lot but would love for the two of them to be together. She's continuing to take her feedings well and has been increased to 9cc's every three hours and increasing her weight nicely. Yay for eating!

It's hard to believe that we're quickly approaching the TWO WEEK mark!! We feel like it's been longer than that so far and can't imagine what it's going to feel like at the end of this process and actually bringing them home.

We hope you all have a wonderful day tomorrow(today)!