Mabry update

We're coming home! She has finished all but 2 feedings since yesterday at 9:00am & those were at 9:00pm and midnight, so  she just wanted to go back to sleep. More importantly she has also gained weight. I got a refresher lesson from occupational therapy on techniques to help her eat better.

Updated* update on Mabry

Mabry is still not eating well,about 19 ounces yesterday. They would like her to eat 24 ounces each day. Despite this, she has had good weight gain since admission on Thursday. All her labs are good, and her thyroid tested fine. They are watching her blood pressure. She had some pretty high bp's in the upper 90's-100s yesterday morning, but overnight they were much lower in the 70s-80s. They have given us a new cuff for home. Ours has had a leak and may not have been giving us correct readings. If she gains weight overnight, we will get to come home 

*Update* So far today has went much better than yesterday. She has ate well her last 3 feedings at 9:00, noon & 3:00. And she's feeling pretty in her bedazzled onsie, though she was still cute in her hospital issued whitey above.

Mabry being re-admitted

Unfortunately Mabry has regressed and is being re-admitted to the hospital in St.Louis.   We have made great efforts but she needs additional help.   Doctors will evaluate her over the next few days a provide her with treatment and therapy while considering other options.   

Mabry making some progress

Mabry has gained some weight this week and the nursing staff reviewed detailed feeding logs documenting her progress.    She has slowed down on her feedings the last two days but we are getting her to eat 14 to 16 ounces each day.     CG staff has asked us to bring her in next Thursday for follow up.   Hopefully she'll keep making progress and gain lots of weight by then.  

Opening Day!

Happy Easter!

Alex was a little green with envy watching Taylor eat her bunny.

Follow-up at Cardinal Glennon

Yesterday we took the babies for a nursery follow-up appointment at Cardinal Glennon. Originally the appointment was only for Alex to check him out since coming off oxygen & diuretic. We scheduled Mabry because she has not been eating well and has barely gained any weight in a month. 

When the babies were discharged from Nicu, both were eating 3 oz every 3 hours. Lately it has been a struggle to get Mabry to finish 2 oz. It is hard to pinpoint exactly when the trouble began because we were also dealing with a period of time when both babies were refusing frozen breastmilk. This was really frustrating because I have about 300 bottles saved up. They are now eating frozen milk without a problem. The eating issue started shortly after her starting the diuril medication for the calcification in her kidneys. Loss of appetite is one side effect of this medication, so that is the only explanation I could come up with.

The good news is Alex is doing great. He no longer needs the apnea monitor or nebulizer. The only medicine he gets now is the polyvisol drops ( vitamins) once a day.

The bad news is they almost admitted Mabry. Her electrolytes were fine. The doctors decided to let us bring her home. They stopped the diuril, and over the next week we need to log when & how much she is eating and her wet diapers. She will go back next Tuesday to see if stopping the medicine has made a difference. If not, she will probably be admitted.