First, the highlight from our day...

We got to take Lauren out for a walk outside today, chaperoned by our nurse, Princess Carrie. It was so nice to get Lauren out for some fresh air and see her out like a regular baby. 

Lauren has really struggled in the past few days. The doctors have been unsure about why she is so unhappy and I keep feeling like all of it could be solved if she was just the youngest baby ever to start talking. Since that isn't an option, today they did an Echo of her heart and it looked alright (for her). That was reassuring for me because I keep thinking that her difficulty is because of her heart. They also measured her BNP which is an indication of the stretch of the left ventricle of the heart and hers was 826, down from 1100 two days ago. That is also exciting but tempered by the fact that your BNP level should be less than 37. Oh well, this way we just have room for continued improvement. 

So if it isn't her heart getting worse, there is something else that is making sleep and happiness difficult. There is a list of options: teething, tummy problems, bowel problems, overfeeding, underfeeding, being a baby.... She has been on morphine since the last surgery and that tends to result in decreased intestinal motility. Thankfully I seem to know the exact moment to head out of the ICU for food or rest and I miss the diapers that are days of intestinal work. Poor Matt.

Last night she didn't get to sleep until after 4am when her nurse/adopted mom, Carolyn, gave her some medication to help her sleep. It is so hard to watch her struggle so I hope that the improvements that we have seen today continue on. 

The other thing that you might notice is that some of Lauren's photos are missing her feeding tube! That got taken out this afternoon and it makes it so much easier to give her snuggles. I will have to remember that tonight when I'm up every two hours to feed her. 

While Lauren is mostly healing externally from her surgery our prayers are now that she continue to heal on the inside with no complications, that her BNP levels continue to go down (once her levels get under 400 the test results will no longer say "Heart failure likely" and I will consider that a personal victory), and that she is able to sleep with her unspecified discomfort allowing her to get the rest and healing that she so badly needs. 

Oh, my little monkey.

They are threatening to send us up to the cardiac ward tomorrow. While I know that technically that is a good thing, I'm also praying that we get one more day in the ICU. I want to see at least 24 hours of my normal Lauren before I will be ready for that next step. If they force us up I may have to revert back to my two year old self and play floppy. If they physically can't move me, we can't really go anywhere, can we? This plan should work. It seems fool-proof.


  1. I guess your daughter can do the floppy thing too, as evidenced by the last photo. I don't know the reason why you are hesitant to go to the cardiac ward - probably because Lauren is getting so much wonderful care in ICU that you cannot imagine her being in a different space. With your wonderful daughter, though, I don't think you need to worry because she'll just mesmerize her new caregiver wherever she is. I know that because I know her mom, who happens to be such a wonderful, caring, loving individual who is capable of creating beauty out of any situation. My prayers are with you. I pray that Lauren passes all those technical tests with flying colours and is soon home with her parents, free from concern! Love to you all. Ann-Marie

  2. Look at Lauren out enjoying the sunshine! Made my day!!!


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