Wow, where have the past 6 months gone? Let’s rewind a bit.
As we awaited the birth of our son in May, we finished having consults with each of the cleft teams in the area. We decided on a team, INOVA Fairfax. Though all of the teams are wonderful choices, this was the right fit for us and our son. We had consults with the plastic surgeon as well as the orthodontist on the team and felt really good about both of them. We were told to expect the most contact with these two doctors within the first year. The other doctors on the cleft team would have more involvement later on. We were told that our son would likely be a good candidate to wear the NAM (nasoalveolar molding). As mentioned in my last post, teams may use a presurgical treatment to prepare the baby for complete lip repair. Because we were expecting our son to be born with a bilateral cleft, we knew the NAM could really help us before the time of surgery. INOVA was the only team working with an orthodontist who specializes in the NAM. We might be looking at an additional surgical procedure if we opted not to go with the NAM. We were also in contact with the cleft team coordinator and she was incredibly resourceful. We met with her prior to delivery and she answered all of our questions and gave us some sample bottles to try. Our baby would need to use special bottles in order to feed properly. This was so reassuring because we were able to test out the bottles ahead of time to figure out how to use them correctly.
As the days passed while we were waiting for our son to arrive, there was so much to worry about. We tried to be as informed as possible. We researched, spoke to our cleft team, and joined support groups. Having a support group has been one of the most reassuring parts of this whole journey. It has given us a glimpse into what lies ahead for us in the next phase of this process. We have been able to reach out to people who have been in our shoes and fully understand what we are going through. It gave us so much hope to hear others’ stories about how they have persevered through some of the hardships that we are sure to encounter.
