Camille and I had our first meeting to interview surgeons on Tuesday. It was definitely a long, exhausting day! Camille had another ECHO, we met with Dr. Catherine Ikemba (pediatric cardiologist), met with the Fetal Heart Coordinator, a social worker, then finally Dr. Joseph Forbess. We were there from 11 to 3:30. Thank you, Lindsey, for babysitting Ellie all day!! Camille and I were both very impressed with everyone we met. You could definitely tell all of them were very knowledgeable and passionate about their work as well as a love for children! We had all of our questions answered as well as some that we hadn't even thought of. Everyone was more than willing to take the time to explain their roles, what we are to expect and address even simple logistical issues we had (parking and can we sleep in the NICU). Although we were told of some additional complications that Adeline might face later on in life (ie need for a pacemaker) the doctors and nurses were straight forward and honest with the good and potentially difficult things about Adeline's condition. This was both a blessing and hard to hear. A lot of the information we were given was the same and even though we have heard most of it before it just never gets any easier to hear. The types of surgeries are the same, however, the timing of them may be a bit different. This all really depends on Adeline and how things go after she gets here. Dr. Forbess explained that he prefers to wait a bit longer if everything is going well for the last surgery (The Fontan). His experience is that kids do better when they are around 5 years of age to have this surgery.
Dr. Forbess was on the show Children's Med Dallas if you are interested and want to check him out. He is on Episodes 2 and 3.
We also discovered that the pediatric cardiologist we met with (Dr. Ikemba) knows Camille's OB (Dr. Dullye) well. They have kids on the same soccer team. Small world.
Because of the amount of time it took to get through the ECHO and meetings we decided to fore go the tour of the facilities. We will go back to do that part and meet with the financial adviser (that part should be a blast).
Round 2 is 1/27 when we meet with Dr. Mendeloff at Medical City.
Continued thanks for all of the love, prayers and support.
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You are both doing such an amazing job advocating for your sweet Adeline. The research and efforts that you are putting in daily to come up with a great plan is just another example of what incredible parents you are.
ReplyDeleteWe love you!
Just found your blog as we are meeting with Dr. Ikemba for our baby boy who is currently 25 weeks. I'd love to ask you some questions if you ever have a minute about your experience at Children's. Thank you for your blog!
ReplyDeleteI would be more than happy to answer any questions you have. You can email me at camilleprewett@gmail.com and we can talk further! Glad you found my blog!!
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