Week Three

Three Weeks

Shirley was born three weeks ago today! I can't believe how fast these few weeks have passed. The hospital environment has been amazing believe it or not. We are here with our wonderful and beautiful daughter, what more could you possibly ask for?

Seattle Children's

Seattle Children's Hospital has been unbelievable. I heard that it was a great place but actually experiencing it has been something else entirely. I have yet to meet a single person that has not genuinely cared about Shirley's or our needs. Whether you're talking with a Dr. or janitor they all show you the same amount of respect and care. The diversity of the staff here is also very impressive. It doesn't matter where in the world they may be from you get a sense of confidence, humility, smarts, and care from every person. I'm not sure how they do their hiring but they are doing something right. It's very hard to convey the level of confidence I have in the staff here but it's off the charts. "Do you have any questions?" and "is there anything I can do for you?" are some of the most common things you hear from nurses and doctors alike. They will explain just about anything to you and hear you out on any concern you raise. So much more could be said.

Heart Function and HFNC

Shirley had another echo today because they were concerned about her overall function. She is looking great in person but poor on paper. The last echo showed that she had some decreased heart function and this echo showed that it was a little worse than a few days ago. It sets off alarms in my head but the doctors aren't overly concerned. They still haven't given her drugs to help her function but its definitely on the table. Her best option is to go back on melirinone to help her heart contract with more force. The electrophysiologist took a look at her EKG today and said that her PACs and PVCs are not concerning given her recent surgery. Its possible that her heart tissue is still just irritated from surgery and that it may be causing the premature contractions. Also treating them right now isn't even an option. Her BP won't even allow them to add the β-blocker used to treat the arrhythmias. Her diastolic pressure is on the low side because of the vasodilator she is on to help with perfusion and the β-blocker is pretty much a "chill pill" for the heart. They are going to continue monitoring Shirley in the CICU for another few days. Shirley is only receiving 2LPM at "room air" through her HFNC now! Her breathing is still looking pretty good and the hope is she will be weaned off shortly.


On a very positive note... Shirley is a breastfeeding pro! OT/PT came today and observed her breathing and how she had no mercy on her pacifier and decided that it was time to try a feeding at the breast. Shirley latched immediately and was able to pause her breathing in order to swallow perfectly. That is one of the huge hurdles for a lot of children. Shirley gets 10 minutes three times a day at the breast now! It made me so happy to see Brianna get to bond with and feed Shirley the way she always wanted to. The possibility of not breastfeeding was something Brianna had already come to terms with and now being able to is a great boost in morale.

If you can handle all 3:27 of this video you will be able to see the little one fall asleep at the very end! If she is getting tired it only take a little pass down the forehead to the tip of the nose with a finger and she will pass out 90% of the time!