Practice Makes Perfect


Shirley has been getting consistently better at eating by mouth. Her feeds are so condensed now that what she used to take in over the course of three hours she now receives in 30 minutes. The OT/PT team has been working hard on her oral skills and three times a day Shirley eats by bottle, if she is up for it. The last three days have been hit and miss as far as her actually getting a sizable portion by mouth but today we saw some real progress. She drank 25ml from her first bottle this morning and 35ml from her bottle this afternoon. The OT that swung by this afternoon was shocked and was probably more excited than we were. It was difficult to get her to take 10-12ml by bottle the last few days and even those feeds were celebrated. If Shirley can keep it up she won't need to go home with an NG tube placed. We are confident that she can do it.

Next Steps

Thankfully there hasn't been much to report concerning Shirley's condition in the last few days and we hope that is a continuing trend. Shirley is still monitored very closely and tomorrow is lab day... not her best days in the past. Shirley is very hard to get blood from for whatever reason so let's hope tomorrow goes smoothly. Labs will tell us a lot about how she is responding to her medication and if it is going to be something viable for us to continue at home. The doctors expect that it will be. She will be starting another heart failure drug in the next few weeks that will also be a longterm addition. Our days here are coming to a close and you can almost feel it. The D word was used this morning (discharge), but with no definitive date attached. There is a lot to be done before we can walk out the doors with Shirley. Brianna and I will both have to complete infant CPR classes and Shirley will have to pass the "carseat challenge." The test involves securing Shirley in her car seat while in the hospital room hooked up to all the monitors. Shirley has to prove that she will be able to handle the trip home. Two hours seems like an awful long time to have her in there but I think it will go fine. She sleeps so much that I can't see her being awake for the majority of it anyway. Hopefully I don't have to eat my words.


Yep, I'm so hopelessly obsessed with taking pictures of Shirley that I've decided to take it to the next level: Instagram. That is only a part of the reason. Although I plan on keeping this site and blog updated, I may start to spread them out over a few days or weeks. A lot of people follow Shirley's progress and Instagram may be a better way to do short updates. Shirley will be in and out of the hospital and cardiology clinics her entire life and we hope that documenting it will provide hope to other families that find themselves in similar circumstances. We have been greatly encouraged by others and we can only hope to do the same.