We're Getting There

Our big girl is 4 weeks old today!! Thankfully Ella had a good week last week - we only had to deal with two hiccups in her recovery. First, a slight dysrythmia was detected in her heartbeat. After an EKG and echocardiogram, the cardiologists are relating it to the fluid around her liver that's causing the belly to distend and push up on her heart. Therefore, they have decided not to treat it.

The second minor set back is that instead of gaining weight Ella has being losing about a half an ounce a day. Unfortunately, there could be many different reasons as to why she is losing weight. Her weight could have been artificially 'pumped up' because of the many products she had been receiving previously or because of her belly being distended. And now that her belly is starting to go down a little bit, the weight loss could be from the fluid being absorbed and discarded. Luckily, we can help her gain weight by adding calories to each of her feedings.

Our parents have been rotating through night duty so we can try to get home, shower, and eat before 9:00pm. We've bribed them with being able to hold Ella while they babysit!! Unfortunately, because Ella's immune system is still suppressed, Grandma, Grandpa, YaYa, Papa, Pops, and Mops need to dress in a gown and gloves when they hold her. Lucky for us, they understand and have not complained.

Little by little Ella has been reaching some goals. Ella's complete blood count (CBC) is nearing the normal range; her liver functions are nearing normal range too; and she is breathing room air on her own, therefore, she has been able to stay off oxygen for a few days.

When Ella does end up coming home we will be busy with outpatient appointments with the hematologist, gastroenterologist, cardiologist, among a few others. But I'll go to a dozen follow up specialists as long as it means we can get Ella home!

In the meantime, being at the hospital 8+ hours each day I have been able to get to know some of Ella's roommates and nurses. Ella shares the Golden Raintree 'pod' with 5 other babies. Over the past month we have seen many babies come in and out, but during this past week or so the babies have stayed pretty much the same so I had the opportunity to get to know Max's mom (who is also a kindergarten teacher in Cheektowaga and teaches with a parent of a child I taught this year) and his grandma, Alizah's mom (who is an art teacher at Heim) and her grandma, and Joseph's parents (who are Amish). Unfortunately, as of today all three of them were moved to Ironwood (another pod). I will miss them, but I am hoping to get together with Max's mom and Alizah's mom once we all get home.

Furthermore, we have gotten to know many of the wonderful nurses (some of our favorites are Chris, Lynn, and Peggy) as well as find out first hand the theory of six degress of separation. For example, Ella's primary nurse, Chris, happens to be Emily's (the Ledgeview librarian) good friend and college roommate's sister. My mom's cousin's wife, Judi, also works in the NICU along with my mom's manicurist's good friend, Shannon, who happens to live around the corner from us. Another girl from school's aunt was Ella's nurse one day too.

Finally, thank you for all the support we have received from you all whether it's a daily prayer, a simple gift left on our doorstep, a dinner prepared, a phone call, a text, or an e-mail. We can't begin to express our gratitude for the support we have felt over the past month. All we can say right now is thank you, thank you, THANK YOU!!!

PS - Keep checking the photo links to see new pictures that have been added!