Tom and I met with Dr. Su (the pediatric cardiologist) today at Primary Children's Medical Center. I had a lengthy fetal echo of the baby's heart and a brief meeting with Dr. Su afterwards. Things look the same as last time, which is, the baby has Hypoplastic Left Heart Syndrome, but they do not see any other complications at this time. We met with a nurse coordinator Kelly, who took us on a tour of the Pediatric ICU. We saw a baby there who was 11 days old and hooked up to all sorts of machines and monitors. A few things we learned on our visit:
--I will possibly get to hold the baby after birth, if so, not for very long before they whisk her away to the ICU
--She will have surgery between 3-6 days old depending on scheduling.
--The surgery will last between 5-6 hours. Babies rarely die in surgery, the crucial time is a few hours post surgery and the following week afterwards.
--She will be in the ICU for about 4 weeks, most of that time, hooked up to many, many machines and we will not be able to hold her. Then onto the 3rd floor where I will be able to learn how to take care of her (she will be there about 1-2 weeks)
--The ICU is in 'lockdown' until the end of the cold and flu season (end of April) and our children will not be able to see the baby at all. (SOOO SAD about that!!)
--She will be in the hospital for approximately 6 weeks and will be discharged with an oxygen tube, feeding tube and several medications.
We got to visit the 3rd floor and meet Brynn Homer who has a baby (Alex) with HLHS, who completed his second surgery about 3 weeks ago and is having a few complications. It was good to finally meet Brynn and see little Alex in person. He is so cute!!
I don't need to follow up with the pediatric cardiologist again before birth. Yea, one less doctor visit!
Tuesday, January 22, 2008
Sunday, January 6, 2008
Recap
Hello all--to start out this blog, I thought I would recap everything that has happened until this point.
July 2007--found out we were pregnant!
October 2007--went down to Utah Valley Regional Medical Center (at 16 weeks along) to a doctor's office where an ultrasound technician there does gender only ultrasounds. Found out we were having a GIRL!! SOOOOOOO excited for Callie to have a sister and to have what I have always wanted, two boys and two girls.
November 16, 2007--had my 'real' ultrasound at Dr. Jones' office. The technician said the baby was breech and wasn't getting a very good look at the heart like she wanted to. I told her that we really like to get a good look at the heart because Tom lost a sister and brother at birth to a left ventricle heart defect. She said that she still could not get the look she wanted and that we would be looking at the heart again. I had my regular appointment right after that and Dr. Jones came in and said that he had talked to the technician and that she had some 'concerns' about the outflow of the heart and a couple other things and that they already had an appointment for me down at Maternal/Fetal Medicine at Utah Valley Regional Medical Center to see a Perinatologist and Genetic Counselor!! I thought I had maybe scared the technician by telling her about Tom's brother and sister and that they were just being cautious. As the days turned into weeks, my anxiety definately increased.
December 4, 2007--appointment down at UVRMC. Technician did a detailed ultrasound. Two genetic counselors came in and asked us a bunch of questions. The perinatologist, Dr. Schemmer came in and said that he did see some abnormalities of the heart and wanted to move us to another u/s room to take a better look at the heart. We changed rooms and got a close up view of her heart. It was obvious that the two sides did not look the same. The doctor proceeded to tell us that he thought the baby had Hypoplastic Left Heart Syndrome and that basically the left side of her heart was underdeveloped and not working properly. This was devastating news and they let Tom and myself have a few minutes alone before we went into his office to discuss our options.
Option #1 Comfort Care. We could choose to just take our baby home and let her die quietly at home which would be from days to a week or two.
Option #2 Heart Transplant. We could try to keep the baby on a special drug that kept her heart going until we could find a newborn donor heart, which is very difficult and would probably require traveling to California.
Option #3 Three Staged Surgery. First surgery would be within the first week of life. The second between 4-6 months. The third surgery between the ages of 2-4 yrs old. We of course have chosen the surgeries and have been researching ever since.
December 14, 2007--Met with Dr. Su, a Pediatric Cardiologist whose technician did a detailed ultrasound of the baby's heart. He confirmed Hypoplastic Left Heart Syndrome and spent over an hour explaining in detail all of the surgeries. Very nice guy.
I have been to 3 more doctor appointments, everybody is basically monitoring the pregnancy to see how the baby and I are developing. So far, there have been no further complications. We now have a few weeks to countdown to the biggest challenge our little family has ever been through.
July 2007--found out we were pregnant!
October 2007--went down to Utah Valley Regional Medical Center (at 16 weeks along) to a doctor's office where an ultrasound technician there does gender only ultrasounds. Found out we were having a GIRL!! SOOOOOOO excited for Callie to have a sister and to have what I have always wanted, two boys and two girls.
November 16, 2007--had my 'real' ultrasound at Dr. Jones' office. The technician said the baby was breech and wasn't getting a very good look at the heart like she wanted to. I told her that we really like to get a good look at the heart because Tom lost a sister and brother at birth to a left ventricle heart defect. She said that she still could not get the look she wanted and that we would be looking at the heart again. I had my regular appointment right after that and Dr. Jones came in and said that he had talked to the technician and that she had some 'concerns' about the outflow of the heart and a couple other things and that they already had an appointment for me down at Maternal/Fetal Medicine at Utah Valley Regional Medical Center to see a Perinatologist and Genetic Counselor!! I thought I had maybe scared the technician by telling her about Tom's brother and sister and that they were just being cautious. As the days turned into weeks, my anxiety definately increased.
December 4, 2007--appointment down at UVRMC. Technician did a detailed ultrasound. Two genetic counselors came in and asked us a bunch of questions. The perinatologist, Dr. Schemmer came in and said that he did see some abnormalities of the heart and wanted to move us to another u/s room to take a better look at the heart. We changed rooms and got a close up view of her heart. It was obvious that the two sides did not look the same. The doctor proceeded to tell us that he thought the baby had Hypoplastic Left Heart Syndrome and that basically the left side of her heart was underdeveloped and not working properly. This was devastating news and they let Tom and myself have a few minutes alone before we went into his office to discuss our options.
Option #1 Comfort Care. We could choose to just take our baby home and let her die quietly at home which would be from days to a week or two.
Option #2 Heart Transplant. We could try to keep the baby on a special drug that kept her heart going until we could find a newborn donor heart, which is very difficult and would probably require traveling to California.
Option #3 Three Staged Surgery. First surgery would be within the first week of life. The second between 4-6 months. The third surgery between the ages of 2-4 yrs old. We of course have chosen the surgeries and have been researching ever since.
December 14, 2007--Met with Dr. Su, a Pediatric Cardiologist whose technician did a detailed ultrasound of the baby's heart. He confirmed Hypoplastic Left Heart Syndrome and spent over an hour explaining in detail all of the surgeries. Very nice guy.
I have been to 3 more doctor appointments, everybody is basically monitoring the pregnancy to see how the baby and I are developing. So far, there have been no further complications. We now have a few weeks to countdown to the biggest challenge our little family has ever been through.
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