Monday, September 27, 2010

Bye-Bye Arterial Line....

Hi everyone,
Just a quick mid-day update from CHOP to give you a summary of what we know today.

Aurelia has been seen by general surgery (the folks that did her work on her intestines) and they are pleased with her progress. All seems well with her recovery on that front. Similarly, the kidney folks swung by to look over the latest labs and fluid counts, etc., and they are pleased with the way her one functioning kidney is progressing and working.

They will be making a few changes to Aurelia's medication and ordering an x-ray to look at her lungs today. It's common for newborns in a NICU, and particularly among HLHS children, to experience increased breathing difficulty after a few days of life. As the body begins to grow and produce fluid that needs to be processed and passed through the body it can be hard for an HLHS baby to keep pace with the body's needs.

This is particularly true of fluid that can build up in the lungs. Aurelia has had some trouble breathing, and the increased air flow into her lungs has not really 'lightened the load' she's had to bear when it comes to her respiratory rate. She's working awfully hard to keep the fluid from her lungs and while she's not losing ground to the fluid, they really want to try and ease her struggles to breathe.

To that end they will begin administering a diuretic twice a day to help her get those fluids out. Additionally, they will increase the levels of nutrients she gets daily via her feeding lines to make sure she stays hydrated. All this will be monitored via x-ray to be sure her lungs don't begin to lose ground to the fluids.

Otherwise the only real news is that they are removing her arterial line today. This line is used to constantly monitor her blood pressure. She's been doing so well that they feel no need to keep that line present. They'll take her vitals via little baby blood pressure cuffs and if they need fluids for lab tests they can take it from the venal line.

So, today is a good day so far - as the other consults come and go we'll try to keep you posted. If we don't, it's because we really need a nap! 


  1. I am glad to hear this news. helen and I really enjoyed our visit yesterday -- it was great to meet Aurelia and to spend some time with you guys. She is a tough little fighter and you and Jillian are providing her with the familiar loving voices, smells and touches that I am sure bring her so much comfort. She is lucky to have been born into such a loving family. You all are always in my thoughts.

  2. So glad to hear this good news -- every success deserves to be celebrated!

    Thanks for your last two posts, Charley. I really appreciate reading them and hope that you find the blog a space where you are able to get things off your chest as needed and can share things in a centralized way. I know how much it meant to us to sometimes "debrief" in that space and just sort of get everything that was in our heads (and hearts), out. To that end, I hope you'll continue to post and use the blog in whatever way meets your needs.

    This post brought back so many memories for me -- I remember how those first couple post-birth days had so many tests and it seemed like something was always happening. As we talked about yesterday, sometimes it is hard to not be in the driver's seat, but thank goodness you are in such wonderful hands that can provide this amazing level of medical care. Even though you can sometimes feel like you're in the backseat, remember that in terms of love and support, you three are Aurelia's primary care team! I know Samina's road does not compare to Aurelia's in many ways, but I do believe that hearing our voices, feeling our touch, and just sensing our presence over those nine weeks contributed positively to what were some very difficult and scary days for her. You all are a vital part of her care -- never underestimate what you are bringing to her healing process. We had one really wonderful nurse at Hopkins who had worked in NICU's all her life, and she really encouraged parents to feel like they were part of the treatment team. It's true that on many days all you can do is sit quietly and offer gentle words, but just hearing your voice and knowing you are there will be very valuable to her.

    To that end, it was wonderful to meet Aurelia yesterday and to have an opportunity to encourage her in person. I was also so glad we were able to see you, Jillian, and Madison -- I only wish we were closer. I will be sending all of my best wishes that things progress as smoothly as possible for her. She is fighting hard, and you two are fighting too! Keep it up, one day at a time!

    P.S. Extra love and hugs to Jillian today.