Our Daughter's story
She was our second. We thought long and discussed longer about the possibility of having another child with a CHD and simply having another child in general. We spoke to every Doctor we came in contact with and participated in genetic research to determine if it was genetic. At the time, nothing in our genes showed it was genetic. We were reassured the chances of this occurring again had doubled but were very slim. So we decided it was time to have another and we felt confidant the baby would be healthy. We were wrong.
We found out about her heart again on her twenty week ultrasound. We had an envelope so the technician could seal the sex and we could have a gender reveal party with our families. We were excited to see the baby. We were happy to finally be able to share a pregnancy that we could not share with her first pregnancy. The technician said she wanted to get the Doctor to review, normal protocol, we were still worried. The heart looked vaguely familiar to me which was unsettling but I am not a Doctor so I was able to easily lie to myself.
The Doctor came in and reviewed the images and my wife asked if something is wrong with the heart and he replied, "yes." "Yes." And my wife broke down saying, "again." I remember that moment like a collage of images swirling together in an orchestra of sounds and emotion. She then said, "open the envelope, I want to see, I want to see." The envelope read, Congrats!!! its a girl!!! And from that moment on it was different than our first. It was our baby girl.
The appointments began with our pediatric cardiologist and we were transferred to NYP. It was all too familiar but not the same. We spent an afternoon with our cardiologist and she was not sure if it was TOF with PA or Truncus, again. So the worrying began, along with the genetic testing that followed. And the tests came back OK which was reassuring but they are not one hundred percent accurate so you continue to worry anyway.
A month or so later we met with our Cardiologist at NYP and had an echo with her. She said it was TOF with PA, the same as our son. One cannot imagine that the news was reassuring or comforting, no one could, unless they have been through what we have been through. The only difference was the pulmonary arteries looked a little higher than our son's PAs which might complicate the initial surgery and involve more than one surgery after birth. That news was awful. The thought of two surgeries, one at birth and one a few months later was awful to think about. We couldn't help it too, what we were going to do with our son? And we were planning on our son needing an infusion scan around the same time. It was a lot to take in so we tried to suppress it.
We were followed during the pregnancy by a different OB, she came highly recommended among my wife's friends and she was available on a day that was better for us so we went with her and it was the best decision my wife had made. The new OB was wonderful, a great person who you knew cared for her field and was more to us than just a Doctor like so many other Doctors in our son's life.
There were different complications with her this time around too. Along with the fluid, the baby's heart would slow at times. This was a little unsettling for us. Especially for my wife because she was the one who had to monitor the baby's movements while at home or at work. I couldn't imagine being told to pay attention to the movements and if she is not active call us. It was a lot of pressure to place on an already pregnant women with a heart baby. That would drive me crazy and it did drive me crazy but it was much worse on my wife. This pretty much guaranteed a non-stress test every time we went in for an OB check up and a few middle of the night visits to get admitted for non-stress tests. There were moments that were scary but she made it through to her delivery date.
The birth was going to be different this time because we were told my wife could see the baby when born. We were told we could take a picture of the baby when she was born. It was great news in comparison to our son's birth. Also, the birth time was looked at more of a celebration because it was not an emergency c-section. We had a scheduled time when my wife was going to walk into the OR to deliver her child. Still unsettling, nervous and all the other emotions but those differences made it a little less stressful. Also, my wife and I had our son this time to help us stay optimistic. We knew already what the hospital was capable of, what our surgeon could do and most of all, how much of an amazing little boy we had.
We arrived early that morning to the hospital in typical fashion of the biweekly commutes to NYC. We were both anxious and the thought of her having to walk into the OR made it worse for her. Like so many times before, I do not recall too much of the day, it was long. But I was able to take some wonderful pictures in the OR which I wasn't able to do with our son. And we were able to see her, more important, my wife was able to see her and give her a kiss on the forehead. A few quick snapshots and she was carried off to the transitional NICU which is a small room on the delivery floor where they stabilize babies before transporting them to the NICU on the seventh floor.
It seemed like hours on end before we could see her. And like my son, I went to see her first and I think I was able to bring the grandparents in eventually, but my wife was unable to see her I think at the time because of surgery. It wasn't until she was transferred to her room and her OB paid a visit shortly after, god bless her, and told the nurses to bring my wife to see her baby. So they moved her to another bed and brought her up to see her daughter which was the right thing to do after all. I know this was harder both times on her because of so many reasons but the overall factor was always the heart condition. My wife couldn't hold her for days or she couldn't feed her daughter because she couldn't eat. The first motherly instincts are repressed because of the heart defect.
The floor where my wife goes after delivery is awful, we referred to it as the dungeon, but it did improve since we had been there three years ago. We tried to get a single room because her last roommate wore heals to the bathroom after giving birth and refused to wear anything else. Her OB was nice in requesting the room for us because they are really difficult to get and there is a three-hundred dollar a night charge to stay in the room. But last minute another mother had lost her baby and needed the room. Awful.
Her roommate this time around was not like the last, she didn't wear heals but gave birth naturally so was on her feet the second day. The tough part was she wanted to bring her baby to the room so without my wife knowing I asked to transfer rooms so my wife wouldn't have to be there considering she hasn't even held her daughter yet. Our nurse, who was wonderful, was already working on it. Plus, I wasn't allowed to spend the night, well, I had to leave at 10 PM anyway because of our son so it didn't matter. But, the hospital has since changed the rules and husbands are allowed to stay overnight but are not permitted to sleep overnight, whatever that means. But at least I could stay later than 10 PM in the beginning when our son was staying with his grandparents.
Our daughters new home in the NICU was one pod over from where our son stayed, in the same position against the left wall. We knew the NICU well at this point. We knew a lot of the nurses and doctors and if we didn't know them, we recognized them from before. It was the same, it didn't change like the OB or the dungeon. It was awful to be there again.
She was lying in her little bed sleeping. She was a little peanut at 6lbs and 12 ounces. So beautiful, so peaceful and had no problem with where she was at the time, she just wanted to sleep.
Every baby is different is the saying we hear the most as parents of a child with a CHD. You get used to not hearing answers or solutions, you get used to hearing we will monitor it and see what happens because Doctors do not know everything. It is life and it is because every baby is different. But we also got used to hearing, you guys are pros at this. Which didn't make any sense to me so we had to constantly repeat ourselves to please treat us like we have never done this before because to us every baby is different. But we didn't know at the time how different or special she was.
I believe we had an appointment for surgery before she was actually born. It is hard to even believe that but that is how wonderful I perceive our surgery staff and doctors to be. It is unfortunate that no one can predict the future or emergencies that occur that cause your surgery to get pushed back twice for both of our kids. Well our son was three times. So you get anxious, you get the full build up or climax the night before and then you get to the hospital and hear that the surgery was pushed back. It is life and something you will never get used to.
On the sixth day, the time had come for surgery. There were no emergencies present to push it back another day. We brought our support group with, we always have our support group, grandparents and godparents. And you wait and wait and wait. We sat in the lobby as we have done twice before with our support group and waited for the surgeon to come with good news for almost the entire day. And we waited and he eventually came with good news.
About an hour later we were able to go visit her. But it wasn't like our son, her chest was closed. Her chest was closed! It was such a relief at the time and we must of looked like two insane parents in front of the nurses in that situation commenting on how good she looked. If it sounds crazy to you, well, you probably have never seen your newborn post heart surgery before. She looked like she was doing so well and we couldn't believe how good she looked. I know, crazy. I am not sure how the visitations went after that or remember but she was doing well and she made it through surgery with a complete repair and successful pulmonary valve replacement.
The following day was hell. We arrived at the hospital in the morning and we were stopped by a doctor at the door advising us not to go in because her stats were not stable and they had to reopen her chest bedside. One day later, two steps back. The only positive to opening her chest again was that it worked and we were told it worked almost instantly. As soon as they opened her chest, her stats began to climb and she was stable again. It meant more days in the NICU at the time and it was selfish to think that for me but more it meant more days she was not able to feed. It was a tough setback and hard to stomach at the time. And later we found out she struggled a lot more than we knew. But to us everything was par for the course.
So we sat in the lobby and we sat with her, back and forth. It felt like we were able to stay longer than we were able to with our son. She also wasn't in an induced coma with her chest open like our son. She was intubated with an IV in the side of her head and she would wake up and then they would give her some more medicine and she would fall back to sleep. Which was difficult to handle because she was awake looking at you but her chest was open and in an awful state, it was something I couldn't get used to. Plus it was different this time, it was harder for me for this time.
That terrible Thursday passed along with the days and slowly she would breathe on her own more and more with less help from the machine. Until she was able to breathe completely on her own. And in a shorter amount of time the medicines became less and the tube was removed and then the IVs were removed one at a time. Then the chest tubes came out and she was able to feed.
To finally feed your child after so many days of birth is something I can't describe. It was probably the hardest thing for me to get over with our son, It took years or I should say I am still getting over the whole eating thing because of the feeding issues he had and simply not eating for that period of time and the emphasis of tracking how many mils he drank and how long it took in our journal every feeding. I brought a lot of that with me because I am still dealing with that today.
But she was different. She was able to eat and eat well. To put it in perspective, our son left the hospital at 28 days eating 15mls a feeding with a feeding tube. Our daughter left the hospital with no feeding tube eating 60mls in 19 days. And her entire recovery was similar to that, She did very well, except for that Thursday. Our nurse god bless her heart was her second mama and we referred to her as just that. And she spoke of that day and the work she had done to get her here in such a protective manner that only a mother could speak.
The time came for her to go home, a lot earlier than expected and a lot earlier than her brother. We decided to bring her brother to meet her the day before we brought her home. We just felt weird about bringing him to a place that was so close to him and the place where he spent so much time. And plus we did not want him to see her like that. We wanted him to meet his little sister the way she was when she was born. And he couldn't be there for the birth or he couldn't visit her because of what she had to go through and maybe we were over protective but it was our choice to make. And he received her just as we thought he would, with love and kisses and hugs.
The day she came home was like the day we brought our son home but better. We were bringing her home to him. And she made it. But we made it because of our friends who visited and cooked us more food than we can eat, the support of our family and the love of everyone and the help of our social worker. She made it because of countless prayers, good thoughts and the hard work of every wonderful doctor and nurse at that hospital whom I have purposely left their names out of our story but they know who they are and we are forever in debt to them. Thank you.
She is home now and doing well. She just turned two months and she eating well most of the time and gaining weight all of the time. The doctors are happy so we are happy but we continue to worry as all parents do.
Unfortunately, like her brother, she will need more surgeries and countless Doctor visits and protection from people with illness and large crowds of people, for now. But she is a warrior and she will do well because of the love of her family and the support of her friends. And of course her doctors and nurses, god bless those doctors and nurses.
We found out about her heart again on her twenty week ultrasound. We had an envelope so the technician could seal the sex and we could have a gender reveal party with our families. We were excited to see the baby. We were happy to finally be able to share a pregnancy that we could not share with her first pregnancy. The technician said she wanted to get the Doctor to review, normal protocol, we were still worried. The heart looked vaguely familiar to me which was unsettling but I am not a Doctor so I was able to easily lie to myself.
The Doctor came in and reviewed the images and my wife asked if something is wrong with the heart and he replied, "yes." "Yes." And my wife broke down saying, "again." I remember that moment like a collage of images swirling together in an orchestra of sounds and emotion. She then said, "open the envelope, I want to see, I want to see." The envelope read, Congrats!!! its a girl!!! And from that moment on it was different than our first. It was our baby girl.
The appointments began with our pediatric cardiologist and we were transferred to NYP. It was all too familiar but not the same. We spent an afternoon with our cardiologist and she was not sure if it was TOF with PA or Truncus, again. So the worrying began, along with the genetic testing that followed. And the tests came back OK which was reassuring but they are not one hundred percent accurate so you continue to worry anyway.
A month or so later we met with our Cardiologist at NYP and had an echo with her. She said it was TOF with PA, the same as our son. One cannot imagine that the news was reassuring or comforting, no one could, unless they have been through what we have been through. The only difference was the pulmonary arteries looked a little higher than our son's PAs which might complicate the initial surgery and involve more than one surgery after birth. That news was awful. The thought of two surgeries, one at birth and one a few months later was awful to think about. We couldn't help it too, what we were going to do with our son? And we were planning on our son needing an infusion scan around the same time. It was a lot to take in so we tried to suppress it.
We were followed during the pregnancy by a different OB, she came highly recommended among my wife's friends and she was available on a day that was better for us so we went with her and it was the best decision my wife had made. The new OB was wonderful, a great person who you knew cared for her field and was more to us than just a Doctor like so many other Doctors in our son's life.
There were different complications with her this time around too. Along with the fluid, the baby's heart would slow at times. This was a little unsettling for us. Especially for my wife because she was the one who had to monitor the baby's movements while at home or at work. I couldn't imagine being told to pay attention to the movements and if she is not active call us. It was a lot of pressure to place on an already pregnant women with a heart baby. That would drive me crazy and it did drive me crazy but it was much worse on my wife. This pretty much guaranteed a non-stress test every time we went in for an OB check up and a few middle of the night visits to get admitted for non-stress tests. There were moments that were scary but she made it through to her delivery date.
The birth was going to be different this time because we were told my wife could see the baby when born. We were told we could take a picture of the baby when she was born. It was great news in comparison to our son's birth. Also, the birth time was looked at more of a celebration because it was not an emergency c-section. We had a scheduled time when my wife was going to walk into the OR to deliver her child. Still unsettling, nervous and all the other emotions but those differences made it a little less stressful. Also, my wife and I had our son this time to help us stay optimistic. We knew already what the hospital was capable of, what our surgeon could do and most of all, how much of an amazing little boy we had.
We arrived early that morning to the hospital in typical fashion of the biweekly commutes to NYC. We were both anxious and the thought of her having to walk into the OR made it worse for her. Like so many times before, I do not recall too much of the day, it was long. But I was able to take some wonderful pictures in the OR which I wasn't able to do with our son. And we were able to see her, more important, my wife was able to see her and give her a kiss on the forehead. A few quick snapshots and she was carried off to the transitional NICU which is a small room on the delivery floor where they stabilize babies before transporting them to the NICU on the seventh floor.
It seemed like hours on end before we could see her. And like my son, I went to see her first and I think I was able to bring the grandparents in eventually, but my wife was unable to see her I think at the time because of surgery. It wasn't until she was transferred to her room and her OB paid a visit shortly after, god bless her, and told the nurses to bring my wife to see her baby. So they moved her to another bed and brought her up to see her daughter which was the right thing to do after all. I know this was harder both times on her because of so many reasons but the overall factor was always the heart condition. My wife couldn't hold her for days or she couldn't feed her daughter because she couldn't eat. The first motherly instincts are repressed because of the heart defect.
The floor where my wife goes after delivery is awful, we referred to it as the dungeon, but it did improve since we had been there three years ago. We tried to get a single room because her last roommate wore heals to the bathroom after giving birth and refused to wear anything else. Her OB was nice in requesting the room for us because they are really difficult to get and there is a three-hundred dollar a night charge to stay in the room. But last minute another mother had lost her baby and needed the room. Awful.
Her roommate this time around was not like the last, she didn't wear heals but gave birth naturally so was on her feet the second day. The tough part was she wanted to bring her baby to the room so without my wife knowing I asked to transfer rooms so my wife wouldn't have to be there considering she hasn't even held her daughter yet. Our nurse, who was wonderful, was already working on it. Plus, I wasn't allowed to spend the night, well, I had to leave at 10 PM anyway because of our son so it didn't matter. But, the hospital has since changed the rules and husbands are allowed to stay overnight but are not permitted to sleep overnight, whatever that means. But at least I could stay later than 10 PM in the beginning when our son was staying with his grandparents.
Our daughters new home in the NICU was one pod over from where our son stayed, in the same position against the left wall. We knew the NICU well at this point. We knew a lot of the nurses and doctors and if we didn't know them, we recognized them from before. It was the same, it didn't change like the OB or the dungeon. It was awful to be there again.
She was lying in her little bed sleeping. She was a little peanut at 6lbs and 12 ounces. So beautiful, so peaceful and had no problem with where she was at the time, she just wanted to sleep.
Every baby is different is the saying we hear the most as parents of a child with a CHD. You get used to not hearing answers or solutions, you get used to hearing we will monitor it and see what happens because Doctors do not know everything. It is life and it is because every baby is different. But we also got used to hearing, you guys are pros at this. Which didn't make any sense to me so we had to constantly repeat ourselves to please treat us like we have never done this before because to us every baby is different. But we didn't know at the time how different or special she was.
I believe we had an appointment for surgery before she was actually born. It is hard to even believe that but that is how wonderful I perceive our surgery staff and doctors to be. It is unfortunate that no one can predict the future or emergencies that occur that cause your surgery to get pushed back twice for both of our kids. Well our son was three times. So you get anxious, you get the full build up or climax the night before and then you get to the hospital and hear that the surgery was pushed back. It is life and something you will never get used to.
On the sixth day, the time had come for surgery. There were no emergencies present to push it back another day. We brought our support group with, we always have our support group, grandparents and godparents. And you wait and wait and wait. We sat in the lobby as we have done twice before with our support group and waited for the surgeon to come with good news for almost the entire day. And we waited and he eventually came with good news.
About an hour later we were able to go visit her. But it wasn't like our son, her chest was closed. Her chest was closed! It was such a relief at the time and we must of looked like two insane parents in front of the nurses in that situation commenting on how good she looked. If it sounds crazy to you, well, you probably have never seen your newborn post heart surgery before. She looked like she was doing so well and we couldn't believe how good she looked. I know, crazy. I am not sure how the visitations went after that or remember but she was doing well and she made it through surgery with a complete repair and successful pulmonary valve replacement.
The following day was hell. We arrived at the hospital in the morning and we were stopped by a doctor at the door advising us not to go in because her stats were not stable and they had to reopen her chest bedside. One day later, two steps back. The only positive to opening her chest again was that it worked and we were told it worked almost instantly. As soon as they opened her chest, her stats began to climb and she was stable again. It meant more days in the NICU at the time and it was selfish to think that for me but more it meant more days she was not able to feed. It was a tough setback and hard to stomach at the time. And later we found out she struggled a lot more than we knew. But to us everything was par for the course.
So we sat in the lobby and we sat with her, back and forth. It felt like we were able to stay longer than we were able to with our son. She also wasn't in an induced coma with her chest open like our son. She was intubated with an IV in the side of her head and she would wake up and then they would give her some more medicine and she would fall back to sleep. Which was difficult to handle because she was awake looking at you but her chest was open and in an awful state, it was something I couldn't get used to. Plus it was different this time, it was harder for me for this time.
That terrible Thursday passed along with the days and slowly she would breathe on her own more and more with less help from the machine. Until she was able to breathe completely on her own. And in a shorter amount of time the medicines became less and the tube was removed and then the IVs were removed one at a time. Then the chest tubes came out and she was able to feed.
To finally feed your child after so many days of birth is something I can't describe. It was probably the hardest thing for me to get over with our son, It took years or I should say I am still getting over the whole eating thing because of the feeding issues he had and simply not eating for that period of time and the emphasis of tracking how many mils he drank and how long it took in our journal every feeding. I brought a lot of that with me because I am still dealing with that today.
But she was different. She was able to eat and eat well. To put it in perspective, our son left the hospital at 28 days eating 15mls a feeding with a feeding tube. Our daughter left the hospital with no feeding tube eating 60mls in 19 days. And her entire recovery was similar to that, She did very well, except for that Thursday. Our nurse god bless her heart was her second mama and we referred to her as just that. And she spoke of that day and the work she had done to get her here in such a protective manner that only a mother could speak.
The time came for her to go home, a lot earlier than expected and a lot earlier than her brother. We decided to bring her brother to meet her the day before we brought her home. We just felt weird about bringing him to a place that was so close to him and the place where he spent so much time. And plus we did not want him to see her like that. We wanted him to meet his little sister the way she was when she was born. And he couldn't be there for the birth or he couldn't visit her because of what she had to go through and maybe we were over protective but it was our choice to make. And he received her just as we thought he would, with love and kisses and hugs.
The day she came home was like the day we brought our son home but better. We were bringing her home to him. And she made it. But we made it because of our friends who visited and cooked us more food than we can eat, the support of our family and the love of everyone and the help of our social worker. She made it because of countless prayers, good thoughts and the hard work of every wonderful doctor and nurse at that hospital whom I have purposely left their names out of our story but they know who they are and we are forever in debt to them. Thank you.
She is home now and doing well. She just turned two months and she eating well most of the time and gaining weight all of the time. The doctors are happy so we are happy but we continue to worry as all parents do.
Unfortunately, like her brother, she will need more surgeries and countless Doctor visits and protection from people with illness and large crowds of people, for now. But she is a warrior and she will do well because of the love of her family and the support of her friends. And of course her doctors and nurses, god bless those doctors and nurses.