Saturday, May 17, 2008
On March 26th we had our third visit with the perinatologists at St. Luke's on The Plaza. We met with Dr. G again. Since it had been about 6 weeks from our last visit, Dr. G was able to see a lot more and have a pretty good idea of what was going on with our baby. It was pretty clear from this ultrasound that Kinley has a Congenital Diaphragmatic Hernia (CDH). Unfortunately for us and Kinley, out of the three diagnoses this is most severe and problematic. This means that Kinley's diaphragm did not close all the way on her left side and her stomach and intestines have slipped up into her chest cavity, filling up the left portion. This is the reason that her heart has shifted to the right side of her chest. What this means for Kinley is that she will have a whole new set of obstacles to overcome. Our main concern will still be the amount of lung tissue she can build before birth and how it will function at birth. (Some CDH babies are unable to produce enough lung tissue to sustain life, even with the help of a ventilator.) She will also need surgery, soon after she is born, to bring her stomach and intestines back into her abdomen and repair the hole in her diaphragm. This will give her lungs room to expand. As soon as she is born, she will be intubated and put on a ventilator. They will also place a NG tube that goes in her nose and down to her stomach. This will be used to make sure that her stomach does not fill up with air. Since her stomach is up in her chest, we want to make sure that it does not begin to expand and put more pressure on her heart and little lungs. Once she is stable (blood gases are good and doing well on the ventilator) she will be transferred to Children's Mercy Hospital. This could be between an hour after birth to a few days. Once she is at Children's Mercy Hospital, they will continue to monitor her stats and wait until she is stable enough for surgery. When the surgeons feel she is ready, she will undergo surgery to bring her intestines and stomach down and then patch the hole in her diaphragm. After surgery we will be able to get our best idea of how much lung tissue Kinley will have to work with.
Thursday, May 15, 2008
To take a break from worrying about Kinley's health problems we had a family get together on February 16th to paint Kinley's room. Kathy and I are not huge fans of pink (even though Mary, Kathy's sister, is a huge fan and will certainly buy Kinley everything in pink), so we decided to go with lavender and white. We, everyone but Kathy, painted three walls lavender and did horizontal stripes on the fourth wall. We are really happy with how the walls turned out and would like to thank everyone for their help!
On February 13th, 2008, we had our second appt with the perinatologists at St. Luke's on The Plaza. This time we met with Dr. G. During this sonogram, with Kinley being 3 1/2 weeks further along, Dr. G could see a blood vessel going towards the area of the left lung. This gave him a different idea on what was causing Kinley's heart to be on the right side of her chest. Our new diagnosis was a Pulmonary Sequestration. This meant that what was origianally thought to be a tumor was actually lung tissue, but it is growing abnormally large and is not connected to any airways. The main concern still remains with development of both lungs. The right lung, still inhibited by the heart and the left lung, now trying to determine how much of it is connected to airways.
On January 18th, 2008, we had our first appt with the perinatologists at St. Luke's on The Plaza. After our Level 2 Sonogram we met with Dr. L who explained the possible reasons for Kinley's heart issue. Since Kathy was only 20 weeks pregnant it was very difficult to make a concrete diagnosis. Dr. L's best guess of Kinley's problem was a Congenital Cystic Adenomatoid Malformation (CCAM). Basically, this is a cyst or tumor growing in the chest cavity and it is pushing the heart out of place. The biggest concern with a CCAM is the develpment of the lungs. With the heart being pushed to the right side of the chest, it will inhibit the growth of the right lung and with the cyst/tumor on the left side of the chest, it will inhibit the growth of left lung. The one bit of good news we received was that even though her heart was out of place, there were no defects with the heart itself.
On January 16th, 2008, Kathy and I went to an appointment at our OBGYN, Dr. M. This was our appt to find out the sex of our baby. During the sonogram we found out that our baby was a beautiful little girl. Lucky for us, we already had a girl's name picked out, Kinley Seep Melcher. Her expected due date is June 11th, 2008. On top of finding out that we were going to have a girl we also learned that her heart was on the right side of her chest. Normally the heart is on the left side. Obviously, this was quite a shock to us both. We were instructed that we would need to have a Level 2 Sonogram done at St. Luke's on The Plaza to help determine the reason for her heart placement. Unfortunately we could not get an appt that day, but we would have one soon.