Ellie Update

Our sweet Elliebel is still in the NICU, day 11.
It has felt a little bit like a hostage situation to me!
It's been another long week with lots of anxiety and frustration, which is interesting since Ellie has had a good week. The problem is we have been thinking she'll be home any day now for the last week.  Tonight we are figuring out that the anxiety and frustration have been caused mostly by unrealistic expectations.
After Sally's water broke and before she delivered, she was told that the baby would be in the NICU for 48 hours after birth, just a matter of course. When Ellie was born on August 25th, we were all under the impression that the NICU stay would be just a matter of days, maybe not go home with Sally, but not stay too much longer. That was not entirely accurate information. Jack and I received this text from Sally tonight after she had a long and emotional heart to heart with one of Ellie's NICU nurses. This nurse has been in the business for 25 years and had a good perspective to share:

"She said there is such a wide range with 35 weekers and that Ellie is totally in the normal range. She said she is sorry that anyone ever predicted 48 hours or a few days for her NICU stay because that wasn't fair to us knowing how different 35 weekers can be. She also said that since her birth weight, lungs, temperature regulation and blood sugar were so great it probably made everyone act like she was totally fine when she did still have to really work on her eating. And she said it's really impossible to predict when they're going to be ready and that she's sorry anyone tried to predict and gave us false hope."

The issue that is keeping Ellie in the NICU is her feeding. It is not her ability to coordinate suck/swallow, it is more her endurance for feeding. It is tiring for her and wears her out. Ellie has had an ng (nasal gastric) feeding tube since she was minutes old and for the first several days received all of her nutrition (pumped breast milk) through it. A week ago tonight, they started giving her the breast milk via a bottle. Ellie was only able to take about 5 ml at a time from the bottle and then the rest would be "tubed". Over the course of the last week, Ellie has shown steady improvement in her oral consumption. Last Friday, Ellie's oral consumption was 22% and by Tuesday it was 56% and by Wednesday into Thursday it was 81%. Huge improvement, but she can't go home until she is at 100% oral feedings for 24 hours. But everything else is looking good and that is awesome. Knowing that these endurance issues for a 35 weeker are not unusual has been helpful in easing our anxiety. It's not that there is something else wrong with her. She just needs time to rest and gain more strength. Ellie wasn't even supposed to be breathing air and drinking breast milk for another three weeks. She's working hard these days. 
So now we are going to change our expectations and assume that it will be another two weeks before Ellie is home and if it is before then, it'll be a bonus.
In the meantime, I have developed a new found respect for folks who have had very sick and/or premature babies who had long NICU stays. Oh my goodness. It's stressful.

Sally is a natural

Can't get enough of the girl

proud grandpa