Home!

We have been home now since Saturday the 4th of August. I haven't written anything because we just seem to jump back into the chaos! Muriel is doing very well. At first, she was uncomfortable and we began giving her the prescribed pain medication but she has been off of that now for four days. She is still taking lasix, a diuretic, and prevacid for acid reflux, along with enalapril for her heart and blood pressure.

Muriel's meds. fed through NG tube

We are attempting to adjust her ever changing feeding schedule. Her weight is 12lb., 10oz. as of Tuesday. She is up in weight from 12lbs., 6oz., her weight when we returned from the hospital. Our fabulous home health nurse, Nancy, who has been with us since our first surgery is helping us to take steps toward removing her NG tube! Before this most recent surgery we had worked Muriel up to taking 45ml in her bottle for a total of about 90ml per feeding. Muriel is now up to 70ml of milk in a bottle and the remaining 30-40ml goes into her tube. That may not sound like much, but considering she used to only have 10ml in her tube after the first surgery, we've come a long way baby! In addition to the feeds during the day, at night she is on a continuous feed using a pump. Until we can replace those calories by increasing what she eats during the day, the NG tube is here to stay.

Nurse Nancy

This has been a challenging, exhausting, and at times frustrating endeavor to say the least. We review her daily caloric intake regularly trying to meet the nutritionist's goals. Jeff has many spreadsheets. The doctors and nurses in the hospital praised us for plumping her up and I don't think they have seen as complicated a feeding schedule in a while. Muriel is on fortified breast milk, but will only take that through the tube, the bottle has to be straight milk. The fortification is coming from an amino-acid based formula called Elecare which is given to babies with extreme allergies and GI problems. It smells a bit foul, like rotten cheese, which is why she refuses to drink it. There is still a theory floating about that Muriel may have a milk allergy/intolerance. One of the most difficult times was in the first two months after surgery. Muriel was vomiting so frequently she was loosing up to four out of eight feeds a day! When she came home after her first surgery she weighed 6lbs, 11oz, she has nearly doubled her coming home from surgery weight.


My official return to work date is September 13th. My classroom is set up and I met with my teammates yesterday. The biggest stress now is finding a nanny. I have put a post on care.com, but it is terrifying! So please let me know if you know anyone who would be interested!


Again, she has made leaps and bounds in a matter of days; we are impressed with her strength and good temperament in this difficult time in her life. We can only hope she won't remember.

Immediately after surgery

At the park watching her sisters on the swings.