After Brea came home we had a pretty quiet few months. Other than fairly regular trips to the pediatrician and pediatric cardiologist we didn't spend a lot of time out of the apartment. The first surgery Brea had was temporary, simply keeping her alive long enough so that she could grow and gain enough strength for the Glenn (and ultimately Fontan) procedure. This meant she was at fairly high risk if she got sick. We were very lucky in that there were no major scares and things rolled on pretty much as normal.
The original aim was for Brea to have the Glenn procedure somewhere between 6mnths to a year. However, the doctors decided that they wanted to perform it as early as possible (4mnths) because they were scared that her pda (ductus) would suddenly decide to close. As we mentioned in a previous post, this could severely narrow her left pulmonary artery.
The timing of the surgery wasn't ideal. I (Matt) had a conference in Italy three weeks after the operation. However, we also knew it was best for Brea to have it done then. As with Brea's first surgery, we were very fortunate with having family visit. Daniel and Rachel came across from Pittsburgh, cooking for us and generally helping us get by. We also had Bronwyn's Mum come over from NZ a few days after the surgery. She was a tremendous blessing when I (Matt) left for Italy the week after Brea was discharged. Knowing that she was around made it much easier to leave.
Before Brea was born, I assumed that each surgery would get a little bit easier. I thought that knowing that we had done this before and that this surgery was one step closer toward the goal would help. We found the opposite to be true. I can remember holding a little (starved) 4mnth old girl while we waited for a delay in the surgery before us. She fell asleep on my shoulder not knowing what lay ahead. She woke up as I gave her to Bronwyn to have a cuddle just before we passed her over to a nurse. I will never forget the look on her little face as we passed her over.
They told us to expect the surgery to last four hours. They suggested that we head home and call them after 2-3 hours to check on progress. We did this to find that they had only just started the surgery. They had spent the previous two hours having great difficulty inserting IV lines, having to call in the surgeon to help them. After an appropriate period of time, we headed back to the hospital to continue to pray and wait for Brea to come out of the theatre.
I think you have to harden your heart to a certain degree in order to not completely break down. Despite crying as I write much of this post, I can remember not crying when seeing her again in the PICU (pediatric ICU).
Despite a little concern in her first night with dropping saturation levels, Brea was progressing well. Unfortunately, the day after she had been extubated she aspirated on some of the milk she was drinking. This lead to her being re-intubated and considerably lengthened our stay. Part of the reason for this was concern over how Brea was drinking.
After the aspiration, they run a (fancy) test with dyed formula (of various thicknesses) and an xray machine to see how she was drinking. They didn't like what they saw and decided she needed thickened milk and an NG tube to assist with feeding. They said she would need the NG tube for at least 6 mnths so we were instructed how to put the tube into her nose and down to her stomach in preparation for going home. Neither Bronwyn nor I thought the test was particularly well done. Up until that point Brea was predominantly breastfed and the test itself was delayed which made Brea excessively thirsty and she had to take the test sitting up in an uncomfortable chair (at 4 mnths old!). This meant the test was done in far from normal conditions. Labor weekend further complicated matters, but after much partitioning they agreed to check her drinking while breastfeeding (unfortunately the fancy tests do not extend to breastfeeding for the obvious reasons). We were very happy that she was given the green light to feed normally again. Shortly after, Brea was discharged and we were able to return home.
Many of the photos of Brea that we took in the hospital, I am still reluctant to share. I can't really even give you a good reason for why I feel that way. The two photos below do not give a graphic view of what she went through. Instead they focus on the positive aspects of the post-op process. In the first she is in a (drug induced) state of rest a couple of days after surgery. The second shows one of her first smiles after the surgery (it took nearly two weeks).