Dawn Torrence Ireland
03-05-2017, 01:33 PM
In July 2014 we found out that Allison was pregnant. We were thrilled! At 11 weeks we went to get a sonogram to get our first look at the baby who we would later name Vivienne. The first time we saw Viv she looked normal, had a strong heartbeat and was rapidly moving her arms and legs. Eleven days later Allison went to get a First Trimester Screening. The tech who performed the sonogram was nice but quiet. Soon the doctor came in to discuss the findings and conduct his own exam. He said that there was excess fluid behind Viv’s neck, which could be nothing but could also indicate that there was a problem.
After some more blood tests and a trip to a genetic counselor we still didn’t know what, if anything, was wrong. On October 10 we went to the Greater Washington Maternal Fetal Medicine office for an amniocentesis. A detailed sonogram is done prior to conducting the procedure, and it was during the sonogram that they discovered an issue. They showed us Viv’s heart and then pointed out a black mass next to it. “That’s the baby’s stomach,” they explained. Viv’s heart was on the right side instead of the left, pushed over by the stomach. “Your baby has what’s called Congenital Diaphragmatic Hernia,” the doctor told us.
After the doctor explained what CDH is he gave us some information to take home and read, including a pamphlet for the Children’s Hospital of Philadelphia (CHOP). He said that CHOP was very good at treating CDH and recommended that we contact them about setting up a visit. After we got home Allison did quite a bit of research about CDH and CHOP. She called to set up a consultation for November 5, and by the end of the day we had decided to give birth there.
It was that same afternoon that Allison discovered and joined CHERUBS. A few weeks later we received the care package, with items donated by parents in honor/memory of their children. A lot of that stuff ended up being very useful, but even more than that, just feeling like part of a community of people who understand what you are going through was really great.
Our first visit to CHOP was productive, exhausting and scary. We took the train up from New Carrollton, MD, the night before and stayed at a very nice hotel in downtown Philadelphia. The next morning we arrived at the hospital at 7:30am and began a long day of testing and meetings. First up was the echocardiogram. Then we had a fetal MRI, which was not very fun for mom or baby. The scan took about an hour because little miss fussy (Viv) wouldn’t hold still. Then we met with our coordinator, Ellyn, who served as our main point of contact to help facilitate our appointments and communication with the doctors. After that we met with a genetic counselor, then lunch, then a two-hour sonogram.
After all of that we went to a conference room where we met with Ellyn and three doctors, including Holly Hedrick, Viv’s surgeon, to discuss the results of the test. The doctors threw out a bunch of numbers but said to ignore them because Viv was only at 19 weeks. They did note that it appeared that the left lobe of the liver was “up,” which was not a good sign, but everything else looked pretty good. We committed to coming back to CHOP for regular checkups every four weeks until 34 weeks, when they wanted us there on a weekly basis.
All of our checkups after that went pretty smoothly. At our appointment on December 30, we met with a psychologist and received a tour of the NICU. We also decided, after talking to our social worker, that we would stay at the Ronald McDonald House in Camden, NJ, once we moved to the area full-time.
We spent January getting ready for Viv’s arrival. We painted and set up the nursery, had several baby showers, and went back to CHOP for a 31 week appointment. Viv was doing really well on all of the things that they look for, and after getting over the initial shock we were starting to feel like maybe everything would work out. The February checkups all went well, with no signs of distress for Viv or Allison. We relocated to the area on March 1 and moved into the RMH in Camden on March 4.
On March 9 we had a successful 37 week appointment, but we also received a reality check during the tour of the room in the Special Delivery Unit (SDU) where Allison would give birth. They showed us the adjacent room where we were told that a team of doctors would immediately intubate and try to stabilize Viv after she was born. We also met with a neonatologist, who walked us through some not-so-pleasant things we already sort of knew but had been trying not to think about regarding Viv’s condition. We were reminded that Viv’s defect was “severe” and were told by a doctor to expect that she would be very sick.
Vivienne Eleanor Finger was born at 10:05 am on Wednesday, March 18, 2015, about four hours after we arrived at the hospital. She was whisked into the adjoining room where a team of ten or so doctors and nurses worked for more than an hour to get her stabilized. After that she was moved down to the NICU. When we left her bedside to go to sleep for the night Viv’s heart rate was over 200 beats per minute and we were told that they might call us that night if she needed to be put on ECMO. When we woke up the next morning she was stable and that day (Thursday) they started the long process of weaning her oxygen and pain medication. The next day (Friday) as we were getting ready to check out of the SDU, Dr. Hedrick stopped by to tell us that she was very pleased with Viv’s progress and wanted to tentatively schedule her repair surgery. She also told us that barring a major setback that it was unlikely that Viv would need ECMO.
Viv was in the NICU for a total of 60 days, most of which followed a pretty similar pattern:
- Up at 6-6:30 to express breast milk. We pumped every 3-4 hours throughout the day. Dave would call Viv’s night nurse before shift change at 7 to get an update on how she did overnight.
- Arrive at the hospital at 8-8:30. Morning rounds were usually sometime between 8 and 11, when the team of doctors and nurses would come by and confer about Viv’s condition and update her treatment plan.
- After lunch, around noon, we would sometimes go for a walk if it was nice out. This was the only time during the day that we had an opportunity to get fresh air or exercise.
- The first few weeks, when Viv was intubated and on a lot of pain meds we tried to leave by 4:00 to get back to RMH for dinner. That saved money and also gave us a chance to see friends that we had formed relationships with in the weeks leading up to Viv’s birth, when we were at RMH most of the time.
- As Viv got better and was more responsive, and particularly when she was having issues with reflux and weaning from pain meds, we stayed later into the evening. Viv typically fell asleep around 7 so by the end that was when we left most nights. That also lined up nicely with shift change, so we could talk to the night nurse before leaving.
Here are the milestone moments from the first few months of Viv’s life:
March 29: Moved off the oscillator onto a conventional ventilator.
March 30: Put back on the oscillator – two steps forward, one step back is par for the course!
March 31: Back to the conventional vent.
April 3: Viv’s repair surgery was scheduled for 7:30am but didn’t start until close to 9:30. They told us it would take about 90 minutes but we didn’t get to talk to Dr. Hedrick until around noon. It turned out that her liver had not been up after all. Her spleen was behind her heart and they think that is why it presented as liver up. Viv’s left lung had actually grown just fine behind all of her soft organs, and while it was damaged it was actually larger than her right lung.
April 8: The first time we got to hold Viv! Allison first, then Dave. It took a while to shift her into place so those first couple days we’d do hour-plus “shifts” holding her in the same exact position.
April 11: Viv was extubated, which meant that we could hear her for the first time. Because her vocal chords and throat were swollen it took her a little while to really be able to make much noise.
April 25: Viv started breathing room air. This was also around the time that Viv started really having some crying fits, mostly in the afternoon and early evening. We thought it was due to her being weaned off of pain medications, and that was definitely part of it, but she also had pretty bad reflux, which is common with CDH.
May 17: We got to take Viv home! Finally! Before Viv was born we actually thought we’d be lucky to get out of the hospital by June or July. After the repair surgery, though, it was clear that Viv was going to be ahead of schedule. The last few weeks in the hospital were kind of a grind. Dave was back working, albeit remotely from the library in the family resource center at CHOP. Viv was having a rough time with reflux and withdrawal and Allison was dealing with it mostly on her own during the day. We started talking to the doctors and nurses about discharge two or three weeks before it actually happened.
Viv will be two in two weeks. She is doing very well from a health and development perspective and we are thankful every day.
- Allison Moore and David Finger
After some more blood tests and a trip to a genetic counselor we still didn’t know what, if anything, was wrong. On October 10 we went to the Greater Washington Maternal Fetal Medicine office for an amniocentesis. A detailed sonogram is done prior to conducting the procedure, and it was during the sonogram that they discovered an issue. They showed us Viv’s heart and then pointed out a black mass next to it. “That’s the baby’s stomach,” they explained. Viv’s heart was on the right side instead of the left, pushed over by the stomach. “Your baby has what’s called Congenital Diaphragmatic Hernia,” the doctor told us.
After the doctor explained what CDH is he gave us some information to take home and read, including a pamphlet for the Children’s Hospital of Philadelphia (CHOP). He said that CHOP was very good at treating CDH and recommended that we contact them about setting up a visit. After we got home Allison did quite a bit of research about CDH and CHOP. She called to set up a consultation for November 5, and by the end of the day we had decided to give birth there.
It was that same afternoon that Allison discovered and joined CHERUBS. A few weeks later we received the care package, with items donated by parents in honor/memory of their children. A lot of that stuff ended up being very useful, but even more than that, just feeling like part of a community of people who understand what you are going through was really great.
Our first visit to CHOP was productive, exhausting and scary. We took the train up from New Carrollton, MD, the night before and stayed at a very nice hotel in downtown Philadelphia. The next morning we arrived at the hospital at 7:30am and began a long day of testing and meetings. First up was the echocardiogram. Then we had a fetal MRI, which was not very fun for mom or baby. The scan took about an hour because little miss fussy (Viv) wouldn’t hold still. Then we met with our coordinator, Ellyn, who served as our main point of contact to help facilitate our appointments and communication with the doctors. After that we met with a genetic counselor, then lunch, then a two-hour sonogram.
After all of that we went to a conference room where we met with Ellyn and three doctors, including Holly Hedrick, Viv’s surgeon, to discuss the results of the test. The doctors threw out a bunch of numbers but said to ignore them because Viv was only at 19 weeks. They did note that it appeared that the left lobe of the liver was “up,” which was not a good sign, but everything else looked pretty good. We committed to coming back to CHOP for regular checkups every four weeks until 34 weeks, when they wanted us there on a weekly basis.
All of our checkups after that went pretty smoothly. At our appointment on December 30, we met with a psychologist and received a tour of the NICU. We also decided, after talking to our social worker, that we would stay at the Ronald McDonald House in Camden, NJ, once we moved to the area full-time.
We spent January getting ready for Viv’s arrival. We painted and set up the nursery, had several baby showers, and went back to CHOP for a 31 week appointment. Viv was doing really well on all of the things that they look for, and after getting over the initial shock we were starting to feel like maybe everything would work out. The February checkups all went well, with no signs of distress for Viv or Allison. We relocated to the area on March 1 and moved into the RMH in Camden on March 4.
On March 9 we had a successful 37 week appointment, but we also received a reality check during the tour of the room in the Special Delivery Unit (SDU) where Allison would give birth. They showed us the adjacent room where we were told that a team of doctors would immediately intubate and try to stabilize Viv after she was born. We also met with a neonatologist, who walked us through some not-so-pleasant things we already sort of knew but had been trying not to think about regarding Viv’s condition. We were reminded that Viv’s defect was “severe” and were told by a doctor to expect that she would be very sick.
Vivienne Eleanor Finger was born at 10:05 am on Wednesday, March 18, 2015, about four hours after we arrived at the hospital. She was whisked into the adjoining room where a team of ten or so doctors and nurses worked for more than an hour to get her stabilized. After that she was moved down to the NICU. When we left her bedside to go to sleep for the night Viv’s heart rate was over 200 beats per minute and we were told that they might call us that night if she needed to be put on ECMO. When we woke up the next morning she was stable and that day (Thursday) they started the long process of weaning her oxygen and pain medication. The next day (Friday) as we were getting ready to check out of the SDU, Dr. Hedrick stopped by to tell us that she was very pleased with Viv’s progress and wanted to tentatively schedule her repair surgery. She also told us that barring a major setback that it was unlikely that Viv would need ECMO.
Viv was in the NICU for a total of 60 days, most of which followed a pretty similar pattern:
- Up at 6-6:30 to express breast milk. We pumped every 3-4 hours throughout the day. Dave would call Viv’s night nurse before shift change at 7 to get an update on how she did overnight.
- Arrive at the hospital at 8-8:30. Morning rounds were usually sometime between 8 and 11, when the team of doctors and nurses would come by and confer about Viv’s condition and update her treatment plan.
- After lunch, around noon, we would sometimes go for a walk if it was nice out. This was the only time during the day that we had an opportunity to get fresh air or exercise.
- The first few weeks, when Viv was intubated and on a lot of pain meds we tried to leave by 4:00 to get back to RMH for dinner. That saved money and also gave us a chance to see friends that we had formed relationships with in the weeks leading up to Viv’s birth, when we were at RMH most of the time.
- As Viv got better and was more responsive, and particularly when she was having issues with reflux and weaning from pain meds, we stayed later into the evening. Viv typically fell asleep around 7 so by the end that was when we left most nights. That also lined up nicely with shift change, so we could talk to the night nurse before leaving.
Here are the milestone moments from the first few months of Viv’s life:
March 29: Moved off the oscillator onto a conventional ventilator.
March 30: Put back on the oscillator – two steps forward, one step back is par for the course!
March 31: Back to the conventional vent.
April 3: Viv’s repair surgery was scheduled for 7:30am but didn’t start until close to 9:30. They told us it would take about 90 minutes but we didn’t get to talk to Dr. Hedrick until around noon. It turned out that her liver had not been up after all. Her spleen was behind her heart and they think that is why it presented as liver up. Viv’s left lung had actually grown just fine behind all of her soft organs, and while it was damaged it was actually larger than her right lung.
April 8: The first time we got to hold Viv! Allison first, then Dave. It took a while to shift her into place so those first couple days we’d do hour-plus “shifts” holding her in the same exact position.
April 11: Viv was extubated, which meant that we could hear her for the first time. Because her vocal chords and throat were swollen it took her a little while to really be able to make much noise.
April 25: Viv started breathing room air. This was also around the time that Viv started really having some crying fits, mostly in the afternoon and early evening. We thought it was due to her being weaned off of pain medications, and that was definitely part of it, but she also had pretty bad reflux, which is common with CDH.
May 17: We got to take Viv home! Finally! Before Viv was born we actually thought we’d be lucky to get out of the hospital by June or July. After the repair surgery, though, it was clear that Viv was going to be ahead of schedule. The last few weeks in the hospital were kind of a grind. Dave was back working, albeit remotely from the library in the family resource center at CHOP. Viv was having a rough time with reflux and withdrawal and Allison was dealing with it mostly on her own during the day. We started talking to the doctors and nurses about discharge two or three weeks before it actually happened.
Viv will be two in two weeks. She is doing very well from a health and development perspective and we are thankful every day.
- Allison Moore and David Finger