At first, she wasn't allowed any milk until they officially scheduled the surgery. After a couple of days, this was scheduled to take place exactly a week after she was born. During that week we watched as her numbers slowly deteriorated.
Due to some of the complexities of Brea's anatomy, the first surgery was able to be performed from the side of her body ('normal' HLHS babies require open heart surgery). This was both good and bad news: good because it is always good avoiding open heart surgery, and bad because her unusual anatomy means the surgeon is less familiar with the specifics of the surgery.
The surgeon performing the surgery was Dr. Q (see http://nymag.com/nymetro/health/features/n_9493/). While a man of few words, we appreciated having a surgeon of such skill performing the surgery. He is the reason that we are heading back to NY for the third stage of surgery (the same surgery as Dorothy has in the story above).
The surgery ended up being delayed for quite some time, which didn't make it easy on us. When they were finally ready for her, we pushed her crib down to the operating theatre and had a long walk back. During the surgery, we waited in the NICU communal area with my (Matthew) parents. I can't remember a lot about waiting for the surgery to be over, but I am sure most of the time was spent praying. I can recall the relief at having a nurse come through to say that everything went well and she was on her way back to the NICU.
Unfortunately, it took two weeks before we left the NICU. While Brea recovered from the surgery quickly, her ductus arteriosus (initially kept open with hormones) was slow in closing. The reason this was a concern was due to narrowing of her pulmonary arteries as it closed. They were concerned that as her ductus closed, it may stop the blood flow through the pulmonary arteries. In the end, it never did close, but we had to stay around until they were happy that this was the case.
All of those parents who have had children in the NICU will remember the small things that many other parents take for granted. It was several hours before we got our first hold of Brea. It was over a week before we put her in clothes. It was over two weeks before I was allowed to disconnect her from the monitor for an hour to walk to the windows and show her outside. Despite this, we both know that our NICU experience was fairly smooth sailing. There are many others out there much less fortunate than us.
I am pretty sure both of us were a little stunned when they actually let us leave the NICU and go home. All of a sudden your child goes from constant 24 hour surveillance attached to several monitors to being left in your care. Somehow all of us have survived to tell the tale.
Here is a picture from the NICU visit. For those of you who have seen photos of Fleur, you may notice some similarities:
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