LHenderson
04-25-2017, 11:53 AM
March 1, 2013, my husband Ryan and I went for our routine anatomy scan never expecting anything out of the ordinary. We are were very excited to find out if we were having a baby boy or girl. We invited both of our moms to come with us since it was our first child and knew they would love to go along. We found out we were having a baby girl and we knew we would be naming her Lucie Rose.
After the ultrasound, the doctor wanted to speak with us in his office. We went into his office and he explained to us that Lucie had fluid around her lungs. This is called plueral effusion. At this time, he did not know what was causing her to have this fluid, but would like for me to have an amniocentesis and a follow up ultrasound the following week. The amniocentesis would see if the pleura effusion was caused by any chromosomal abnormalities.
I opted to have blood work done instead of the amniocentesis because I was uncomfortable with any risks that were affiliated with it. The blood work came back with low possibility that Lucie had any chromosomal abnormalities. After a week the amount of fluid around Lucie's lungs had not changed at all, so the doctor wanted to see us back in two weeks for a comparison.
When we went back in two weeks, the fluid still had not changed. Our doctor still had no idea why Lucie had the fluid around her lungs as well because she looked good otherwise. At this point we were referred to Cardinal Glennon Medical Center's Fetal Care Institute (FCI). There we would see Dr. Vlastos the head of FCI. \
Our first time at FCI was quite the experience. Our appointment lasted all day and included meeting the social worker and Footsteps coordinator (she works with the NICU), having an ultrasound, and meeting with the doctor. When Dr. Vlastos came in to see us during the ultrasound, he was such an easy going man. He spoke in a way that nothing seemed scary. It was during this ultrasound that it could be identified what was going on with Lucie. In the ultrasound, you could see something was in her chest and that the fluid hadn't really changed. This is when we heard the words we will never forget for the first time.
For us hearing a diagnosis was a relief. For five weeks we had known something was wrong, but we had no idea what it was. We hadn't told anyone that anything was wrong because we didn't want to answer questions we didn't know that answers to. Quickly, we learned that Congenital Diaphragmatic Hernia would create a whole new set of fears, worries, and unknowns in our life.
I continued seeing my OBGYN and Dr. Vlastos at FCI for all my appointments. I had an MRI done at 25 weeks to confirm the diagnosis CDH. Luce had a lung-to-head ratio (LHR) was 1.6 and had a predicted lung volume of 40%. This gave Lucie a very good shot. We now had a game plan that Lucie would be delivered at St. Mary's hospital which is the high risk hospital affiliated with Cardinal Glennon. After delivery, she would be stabilized and transported to Cardinal Glennon's Level 4 NICU. Lucie need to be in a hospital that had ECMO (heart and lung bypass) and the NICU at St. Mary's does not have ECMO.
During my pregnancy I developed polyhydramnios (excess amniotic fluid) and Lucie developed hydrops (swelling under the skin). This made the her delivery more high risk than it was before. Because of the combination of CDH, plueral effusion, and hydrops, it was feared that Lucie would not survive transport from St. Mary's to Cardinal Glennon. In rare cases, there will be deliveries done at Cardinal Glennon. All deliveries done at Cardinal Glennon are c-sections or EXIT procedure (a special type of c-section).
At 35 weeks, I was admitted to St. Mary's until Lucie was to be born. I was placed on continuous monitoring. Lucie was extremely reactive in the womb. After three days, I was moved to a different hallway which was considered the less severe side of the high risk hallways. I was now on intermittent monitoring since Lucie was doing so well. I now had the freedom to get up from my bed, sit in the chairs, in the room, and go on one wheel chair ride a day.
July 1, 2013, I was transported to Cardinal Glennon Medical Center to deliver Lucie. I was prepped in FCI and got one final peek of Luice safe within me. My c-section went extremely smooth. There was never a single moment that I was alone or did not have someone holding my hand for comfort. Lucie came out and gave out two little cries to let us know she was there and going to defy odds.
Immediately, she was swept to the OR across the hall to be intubated and stabilized. It felt like forever, but it was probably 10-15 minutes before Ryan could go across the hall to see her. He brought back two pictures for me to see her. After a little while longer, Lucie was wheeled to my OR so that I could see her. I grabbed her hand and rubbed her hand as I cried. After recovery, I was able to spend a half hour with Lucie in her NICU room before I was brought back to St. Mary's.
The first day Ryan spent in the NICU with Lucie while I recovered at St. Mary's. That night I received a call from the NICU. I was still on morphine at this point, so much of it was a blur and me trying to understand. Lucie had done really well until her last blood gas. She was not pushing out the CO2 well enough. She had pulmonary hypertension as well. They switched her to an oscillating vent which make her take 600 breaths per minute. She was on nitric oxide for her pulmonary hypertension. They also warned me that there was a very likely chance that she would be on ECMO by morning.
When Ryan went to the NICU the following morning, I prepared for the worst. He called me as soon as he was there to let me know she did not go on ECMO. I was so relieved. Now I had to wait for my mom to get me so I could go for my daily visit over there.
Visiting Lucie's room on this day was completely different than the day before. The room was dark, Lucie had ear muffs over her ears, her bonding baby covering her eyes and she was sedated. The room was loud from the sound of the oscillator. At this very moment, Lucie was the sickest baby in the NICU. Lucie was scheduled to have surgery July 5, but she first had to be off the oscillator.
On Wednesday, after I was released from the hospital, they believed Lucie was ready to be switched back to the conventional ventilator. After just a few hours, he body was showing she was not ready and she had to be switched back to the oscillating vent. She would stay on that vent until the following week. At this point, she still was pretty swollen from the hydrops. Our doctor thought she would improve if she was able to move some. She was taken off the sedative and Friday morning we saw her open her eyes for the first time since she was born.
The following week, Lucie continued to have better blood gasses and was able to do well on the traditional vent. Thursday morning, Lucie had her repair surgery. The hardest moment in our life was watching her be wheeled out of the NICU for surgery. Lucie's surgery went smoothly. She was repaired with a gortex patch. Her surgeon had tried to repair it with just stitches, but as he stitched it began to tear apart. Lucie had a rough night and was in a lot of pain. I stayed with her to make sure her pain was being managed well.
For the next week we continued to monitor her and was doing really well. She could not be extubated until the fluid around her lungs disappeared. Finally at 19 days old, the fluid disappeared with an explanation. There was still no known reason for why she had this fluid around her lungs. We took it as a sign from God to alert us something was wrong.
The day Lucie was extubated, it was hard to keep her happy. She was tired of having the breathing tube down her throat and kept trying to rip it out. Either her nurse or myself had to hold her arms down at all time so she wouldn't extubate herself. She was extubated around noon that day. I was able to hold her and comfort her while she cried. I was no longer limited to what I could do for her.
Lucie started eating two days after she was extubated. She started on pedialyte, but quickly moved to breast milk. We were even able to start breastfeeding. She loved nursing so much, she would barely take a bottle and would have very bad reflux with it. When she nursed, she ate well and rarely had reflux problems.
The last few days in the NICU were the hardest. She was off oxygen and exclusively breastfeeding, but she wasn't ready to go home until she gained weight for three days in a row. I rocked her while I watched the announcement of Prince George being born (on Lucie's due date). I took on the role of doing all her care. The only thing was we weren't going home. I was beyond frustrated and ready to go home.
The following Monday, after 29 days in the NICU, Lucie went home.
After the ultrasound, the doctor wanted to speak with us in his office. We went into his office and he explained to us that Lucie had fluid around her lungs. This is called plueral effusion. At this time, he did not know what was causing her to have this fluid, but would like for me to have an amniocentesis and a follow up ultrasound the following week. The amniocentesis would see if the pleura effusion was caused by any chromosomal abnormalities.
I opted to have blood work done instead of the amniocentesis because I was uncomfortable with any risks that were affiliated with it. The blood work came back with low possibility that Lucie had any chromosomal abnormalities. After a week the amount of fluid around Lucie's lungs had not changed at all, so the doctor wanted to see us back in two weeks for a comparison.
When we went back in two weeks, the fluid still had not changed. Our doctor still had no idea why Lucie had the fluid around her lungs as well because she looked good otherwise. At this point we were referred to Cardinal Glennon Medical Center's Fetal Care Institute (FCI). There we would see Dr. Vlastos the head of FCI. \
Our first time at FCI was quite the experience. Our appointment lasted all day and included meeting the social worker and Footsteps coordinator (she works with the NICU), having an ultrasound, and meeting with the doctor. When Dr. Vlastos came in to see us during the ultrasound, he was such an easy going man. He spoke in a way that nothing seemed scary. It was during this ultrasound that it could be identified what was going on with Lucie. In the ultrasound, you could see something was in her chest and that the fluid hadn't really changed. This is when we heard the words we will never forget for the first time.
For us hearing a diagnosis was a relief. For five weeks we had known something was wrong, but we had no idea what it was. We hadn't told anyone that anything was wrong because we didn't want to answer questions we didn't know that answers to. Quickly, we learned that Congenital Diaphragmatic Hernia would create a whole new set of fears, worries, and unknowns in our life.
I continued seeing my OBGYN and Dr. Vlastos at FCI for all my appointments. I had an MRI done at 25 weeks to confirm the diagnosis CDH. Luce had a lung-to-head ratio (LHR) was 1.6 and had a predicted lung volume of 40%. This gave Lucie a very good shot. We now had a game plan that Lucie would be delivered at St. Mary's hospital which is the high risk hospital affiliated with Cardinal Glennon. After delivery, she would be stabilized and transported to Cardinal Glennon's Level 4 NICU. Lucie need to be in a hospital that had ECMO (heart and lung bypass) and the NICU at St. Mary's does not have ECMO.
During my pregnancy I developed polyhydramnios (excess amniotic fluid) and Lucie developed hydrops (swelling under the skin). This made the her delivery more high risk than it was before. Because of the combination of CDH, plueral effusion, and hydrops, it was feared that Lucie would not survive transport from St. Mary's to Cardinal Glennon. In rare cases, there will be deliveries done at Cardinal Glennon. All deliveries done at Cardinal Glennon are c-sections or EXIT procedure (a special type of c-section).
At 35 weeks, I was admitted to St. Mary's until Lucie was to be born. I was placed on continuous monitoring. Lucie was extremely reactive in the womb. After three days, I was moved to a different hallway which was considered the less severe side of the high risk hallways. I was now on intermittent monitoring since Lucie was doing so well. I now had the freedom to get up from my bed, sit in the chairs, in the room, and go on one wheel chair ride a day.
July 1, 2013, I was transported to Cardinal Glennon Medical Center to deliver Lucie. I was prepped in FCI and got one final peek of Luice safe within me. My c-section went extremely smooth. There was never a single moment that I was alone or did not have someone holding my hand for comfort. Lucie came out and gave out two little cries to let us know she was there and going to defy odds.
Immediately, she was swept to the OR across the hall to be intubated and stabilized. It felt like forever, but it was probably 10-15 minutes before Ryan could go across the hall to see her. He brought back two pictures for me to see her. After a little while longer, Lucie was wheeled to my OR so that I could see her. I grabbed her hand and rubbed her hand as I cried. After recovery, I was able to spend a half hour with Lucie in her NICU room before I was brought back to St. Mary's.
The first day Ryan spent in the NICU with Lucie while I recovered at St. Mary's. That night I received a call from the NICU. I was still on morphine at this point, so much of it was a blur and me trying to understand. Lucie had done really well until her last blood gas. She was not pushing out the CO2 well enough. She had pulmonary hypertension as well. They switched her to an oscillating vent which make her take 600 breaths per minute. She was on nitric oxide for her pulmonary hypertension. They also warned me that there was a very likely chance that she would be on ECMO by morning.
When Ryan went to the NICU the following morning, I prepared for the worst. He called me as soon as he was there to let me know she did not go on ECMO. I was so relieved. Now I had to wait for my mom to get me so I could go for my daily visit over there.
Visiting Lucie's room on this day was completely different than the day before. The room was dark, Lucie had ear muffs over her ears, her bonding baby covering her eyes and she was sedated. The room was loud from the sound of the oscillator. At this very moment, Lucie was the sickest baby in the NICU. Lucie was scheduled to have surgery July 5, but she first had to be off the oscillator.
On Wednesday, after I was released from the hospital, they believed Lucie was ready to be switched back to the conventional ventilator. After just a few hours, he body was showing she was not ready and she had to be switched back to the oscillating vent. She would stay on that vent until the following week. At this point, she still was pretty swollen from the hydrops. Our doctor thought she would improve if she was able to move some. She was taken off the sedative and Friday morning we saw her open her eyes for the first time since she was born.
The following week, Lucie continued to have better blood gasses and was able to do well on the traditional vent. Thursday morning, Lucie had her repair surgery. The hardest moment in our life was watching her be wheeled out of the NICU for surgery. Lucie's surgery went smoothly. She was repaired with a gortex patch. Her surgeon had tried to repair it with just stitches, but as he stitched it began to tear apart. Lucie had a rough night and was in a lot of pain. I stayed with her to make sure her pain was being managed well.
For the next week we continued to monitor her and was doing really well. She could not be extubated until the fluid around her lungs disappeared. Finally at 19 days old, the fluid disappeared with an explanation. There was still no known reason for why she had this fluid around her lungs. We took it as a sign from God to alert us something was wrong.
The day Lucie was extubated, it was hard to keep her happy. She was tired of having the breathing tube down her throat and kept trying to rip it out. Either her nurse or myself had to hold her arms down at all time so she wouldn't extubate herself. She was extubated around noon that day. I was able to hold her and comfort her while she cried. I was no longer limited to what I could do for her.
Lucie started eating two days after she was extubated. She started on pedialyte, but quickly moved to breast milk. We were even able to start breastfeeding. She loved nursing so much, she would barely take a bottle and would have very bad reflux with it. When she nursed, she ate well and rarely had reflux problems.
The last few days in the NICU were the hardest. She was off oxygen and exclusively breastfeeding, but she wasn't ready to go home until she gained weight for three days in a row. I rocked her while I watched the announcement of Prince George being born (on Lucie's due date). I took on the role of doing all her care. The only thing was we weren't going home. I was beyond frustrated and ready to go home.
The following Monday, after 29 days in the NICU, Lucie went home.