We couldn’t get to a computer last night to post an update for you, but no news is good news. She has remained steady as she has been weaned off of her blood pressure medicine and is being taken off the ventilator as we are writing this (they ask parents to step out of the room for that procedure). She will go back on oxygen only through her nose. We are still dealing with some tummy problems. Hopefully pulling her off the ventilator will help that and she will be able to stay steady breathing on her own.

The people here always say that boring days are good days. We couldn’t agree more. They just want Haven to relax today to try and gain strength after yesterday’s ordeal. The paralytic is slowly wearing off and she is slowing waking up and moving around a little. She’s still on the ventilator, but they are hoping that she will feel well enough tomorrow to try to begin weaning her back off. She is a bit puffy. This scared us at first (brought back memories of the 17 pound baby we had a month ago!), but we’ve been assurred that swelling and fluid retention is normal, especially after heart surgeries. Hopefully, her kidneys will kick in full steam this time. Mom and Dad have also taken advantage of the boring day to recooperate from all the excitement. It’s amazing what milkshake will do…..for Mom & Dad (not Haven).

Haven is back in her room now after surgery. They opened her chest again in order to make some corrections to the reconstruction of her heart (surgery #6). These adjustments seem to have made the problem better for the time being. The surgeon said her cardiovascular system is very sensitive to even the slightest changes — one of the most sensitive he’s seen. This means that a very fine line has to be walked when trying to find the right balances for Haven’s heart to function. As we saw this morning, if conditions aren’t quite right, things can get complicated real fast. The adjustments they made today seem to be working for now. She has been back on the ventilator (which is breathing for her) since the emergency this morning. They want to try to get her to be breathing on her own again as soon as possible. Currently, she is sedated and paralyzed again so she can rest through the night. They say this is quite a set-back, but Haven will continue to fight through this battle as she has with all the other battles she has faced in her short, five-week-long life.

This morning Haven has taken a step back. Word says that her lungs are not getting enough blood (the opposite issue she had during her first HLHS surgery). However, the doctors are confident that they know what to do to correct this insufficiency. 

As soon as they can, they will put Haven back into surgery and take off a restrictive band on her heart so that more blood can reach the lungs. Hopefully this will put us back on course, but as with any open heart surgery with a special baby like Haven, nothing is 100%.  

Just like the saying goes we are doing a dance and Haven has the lead. When she decides to take a step back we follow in step.

Keep Haven and her doctors in your prayers as she goes back to surgery this afternoon.

Uncle Justin