The girls reached another milestone today, 150 days old! We have been blessed with cupcakes, presents and well wishes but by far the best present today was some hope. We definitely felt a little hopeless earlier in the week when Ellie was yet again deteriorating and we were asking ourselves questions such as ‘what if she never gets better.’ But hope has come in the last couple of days with a new plan and direction for helping little Ellie get home one day.
It is now a general consensus that the common thing holding Ellie back since her crash in Level 2 is the recurring aspirations. After her feeds (not during) she has episodes of chronic reflux which are managing to cause some choking and she ends up with some milk on her already fragile lungs. This slows her down, makes her work much harder and can easily lead to further problems such as pneumonia (which she most likely has at the moment).
The short term solution is to only provide continuous feeds that are line fed directly into her duodenum (large intestine). As much as she want’s to feel the milk in her stomach it just isn’t worth the risk of her aspirating again. (she can be quite cranky about this!).
The hope is that via this she will be able to grow and build up enough strength to be ready for some surgery. The surgery will tighten the sphincter at the top of her stomach to prevent milk coming back up the wrong way as it has so easily been doing with Ellie. While they have her under anesthetic they can also fix her two hernia’s and put in a peg line (meaning she won’t have to have a feeding tube down her throat anymore).
As much as we are petrified of sending her into surgery and getting her intubated again, we can’t keep going on like this. She isn’t making any real forward progress and every time she has a crash she is on high risk again. If she pulls through the surgery well she should feel a lot more comfortable without the hernia’s or tubes down her throat and her lungs will have a chance to strengthen up without the complications of continual unwelcome fluid.
Ellie is looking much more relaxed and peaceful today and is enjoying her expensive NAVA Machine. (We were trying to add up the cost of her surgeries, specialist equipment as well as her everyday hospital costs of staffing and materials and figure she is easily a million dollar baby…..thank God that we are blessed to live in a country with government health care!)
My normal Saturday Daddy Day was gate crashed today to help celebrate the girls 150th day birthday, and another celebration will be had with the staff on Wednesday this coming week.