Wednesday, June 20, 2012
Advice for finding out your baby has special needs in utero
I just wrote this for support for a mom in the hospital but I want to place it here for my records.
As much as I tried to be prepared for the what if's, I was humbled and still am about everything I have been through Elisa and her sister. There are scary stories out there but there are those full of great promise to give you hope for your baby girl. We just have to take it day by day and try our best to treasure each moment as an extra moment with those we love. The best advice I heard when I was pregnant and worried to death about Elisa is that the human body is a miracle in itself. It is truly an amazing feat to create and foster the growth of another human. The fact we have so much things that could go wrong that do not is another gift. Just focus on appreciating her and what she will accomplish and has already done so far. There is no baby more determined to live in my mind then one born with complications. They fight to survive in utero and will fight to get most that they can out of life. Please let me know if you need anything.
Monday, June 18, 2012
How it began
It had taken a long emotional 7 years to welcome our first daughter with the help of medical technology. After celebrating a few months after her first birthday, we were elated to find out that we were expecting another addition to our family. In late spring, we were joyed to find out we would be awaiting another daughter. We went on a month vacation and I came home midsummer for my mid trimester ultrasound. I expected more of the same ultrasound type stuff that I had gone through the first time.
My daughter Oliva played around merrily with her grandmother as I tried to watch her and the sonogram at the same time. Getting caught up in Oliva's laughter, I had been glancing and dismissing how much the technician was reviewing my younger daughter, Elisa's heart. While caught up in laughter with Oliva, I felt a oomforting yet scary touch on my arm. I had been through so many ultrasounds that I knew something was not right as the words, "I'm sorry but there is something wrong with your baby's heart. I must go get the doctor." The Doctor came in scanned carefully with her own eyes and confirmed that there was something wrong with Elisa's heart. The next thing I know, I am scheduled to see the pediatric cardiologist the next day. 'What was wrong with my baby's heart? Could it be fixed? What was the prognosis? What were all the terms the doctor mentioned so I could remember to pillage the internet for them? Was this miracle going to be okay?'
That night I slept very little and endure a long night comforted by Oliva. The next day came and with echocardiogram we got the unsure at that time but correct diagnosis. Elisa had a severe Tetralogy of Fallot. She had a large VSD (Ventricular Septal Defect) and no flow going through where her Pulmonary Valve was supposed to be. The team was not sure if she had another significant issue known as MAPCAS (multiple aorticpulmonary Collateral Arteries or a PDA( (patent ductus arteriosus) which was even more rare. Hopes were that she was having some flow up a pulmonary valve which we later would learn never existed. We had two options as we would research. That particular cardiologist preferred the first which is called a BT Shunt or Blalock-Taussig Shunt. It would allow Elisa's heart to grow before the local surgeons could work on it but it would mean that Elisa's oxygenated blood would have been compromised. The second was a complete repair, which would be more risky but overall didn't seem to have as much risk in our opinions as opening up her heart twice in a year. As time grew closer we learned that she had an undersized pulmonary artery which would make complete repair to complicated where we lived so we opted for more opinions and found experts that would lead us to Lucille Packard Children's Hospital in Stanford California.
Throughout the rest of the pregnancy my fear was on edge the whole for all of my family as we worked together trying to establish the best care that we could. I felt robbed at times of a joyous pregnancy but both of my pregnancies had been complicated by morning sickness throughout most of the time and other concerns. It honestly felt like a sick nightmare throughout the entire ordeal. I felt so alone and afraid but was beginning to see that there were kids alive and thriving with Tetralogy of Fallot, even athletes. I began to see that Elisa could have a normal life hopefully if the ultrasound were off a little but we would not know any certainties until after she was born. I was ecstatic to find out the amniocentisis was clear and I thought that bridge had been crossed and would not be revisited. I was even told during an ultrasound that Elisa's stomach was enlarged but it was nothing of concern. I knew that was something significant but I put that away as a concern for later.
I was researching trying to see if there was anything that I could do even if it meant putting my life in danger to spare Elisa of the surgeries that she would endure once born. My husband, Lazaro and I scoured over medical data and interviews trying to do what we could for Elisa. The whole time, we worried if she was just going to be okay. I wanted this nightmare to be over and to wake up with healthy baby in me. The thoughts of my daughter not surviving terrified me to the core. I wanted to be so prepared and ready to help her battle but that isn't possible. The beginning of October, the month of Elisa's due date, we packed our bags and traveled our second journey to Palo Alto, California. I stayed behind with Oliva and my mother in that house full of so many miracles yet to be discovered.
We started off with a tour of the Ronald McDonald house and I immediately met two heart parents. One introduced me to another mother, who's daughter to gave me so much hope. She told me how her daughter had multiple CHD's (congenital heart defects) and was not predicted to live yet here she was getting her second surgery. She was still in CVICU (Cardiovascular Intensive Care Unit), but was under great hands for her age which was 5 or 6 months at that time. Hearing this mom talk of her daughter and everything she had been through seemed to open a light of great hope and reassurance within me. That month I made friends in that home that helped ease the tension that I had been feeling. I also saw a lot that made me fear for the worst yet hope for the best. One of the volunteer massage therapists gave me so much comfort one day when we were discussing my daughter. She said that her teacher had told her that, 'The human body is such a miraculous event. There are so many things that have to work together within our bodies that can go wrong that the fact that we are miracles to be able to live as long as we do is a miracle.' Yet we saw the Dalai Lama while staying there but the volunteer's words are the one's I will never forget that gave me the most hope and courage.
THE LABOR It was decided after trying to put it off that Elisa would be induced on her due date if it was safe. I tried all natural ways to induce her from eating various spices, acupuncture, massage therapy, and begging for pitocin even because my husband and I knew she would have had a better chance. The doctor's finally gave in and tried some very painful ways to induce me with various techniques. Finally on the third and last painful foley they managed to get my water to break. Unfortunately there was meconium present. Labor was intense and after 8-9 hours of battling the pitocin, I was very sure I wanted an epidural preferably a spinal. The gave me the epidural but it calmed me down for another 8 hours and then it wasn't phasing me anymore. I seldom spoke during the labor at all. Finally the doctor's began saying that if Elisa didn't drop soon they would do a c-section. The 23rd hour post waterbreak came and they were shocked to see that Elisa was ready to be born. They wanted me to wait because I had a fever to let the tylenol to work. At this point, I told the nurse very sternly, "Turn of that d---- pitocin." She threatened me with a c-section but turned it down to 50%. Well thirty minutes had passed and I had been secretly doing small pushes because I could not hold Elisa in any longer. As the doctor was gowning up they told me to push so I did my official first two pushes with great determination. Then the third push I gave them a quick warning as they weren't finished putting on their scrubs. I yelled, "She's coming out" They scrambled to catch her. She came out with the softest cry and they rushed her over to get her vitals and oxygen.
First breaths Elisa's first apgar was 8 out of 10 and was the same for the second apgar. Had we had known she had such a complex little heart, I shutter to think of what could have been her outcome. I got to kiss her before they whisked her away for testing and her bed in the NICU (Neonatal Intensive Care Unit) Elisa had to have a medication caled prostaglandin's put into her umblical cord through IV fluids that would eventually fall off because her heart as all babies had been overridden with the umbilical cord because she wasn't required to actually breath and oxygenate her own blood while developing in the womb. At any moment the override valve in her heart that allowed this development to happen could shut closed and she would suffocate to death so the hopes where that this medication would keep her heart in the in utero state until her first open heart surgery.
The echocardiograms confirmed everything that we had seen in utero and still we wouldn't be completely sure of anything until the surgeon, Dr. Hanley could open her up and see for himself. We didn't know when that would be. I lingered over her bed as much as my strength would allow me. When she was two day's old, I was discharged from the hospital and we were told that the following morning would be her first heart surgery. That morning we walked down to basement of the hospital and watched them take sweet little 7lb Elisa away to prep for surgery. We met all the doctor's who would be working on her tiny heart. As the doors closed behind her, I nearly collapsed in fear. I knew anything could happen and nothing was guaranteed. I had already learned that at that point by seeing what other's had gone through that anything could have happened. We waited and waited until finally around 7 hours later, Dr. Hanley returned to us. She had been on bypass for nearly 5 hours which meant that her heart and lungs were resting while a machine worked for her during the heart surgery. She had no place for even a pulmonary valve to go if she had one so he had to build her one. He had patched her large VSD and stitched a few other small holes. He had enlarged her pulmonary artery as well.
As harsh as this picture is to see it is nothing like seeing it in person. Elisa was so lifeless and we watched as they slowly weaned her off the ventilator which took a day. She began to show improvement of course the first one was her skin was pink. She began to open her eyes more and more even though she was so weak. She was a determined fighter.to be continued
My daughter Oliva played around merrily with her grandmother as I tried to watch her and the sonogram at the same time. Getting caught up in Oliva's laughter, I had been glancing and dismissing how much the technician was reviewing my younger daughter, Elisa's heart. While caught up in laughter with Oliva, I felt a oomforting yet scary touch on my arm. I had been through so many ultrasounds that I knew something was not right as the words, "I'm sorry but there is something wrong with your baby's heart. I must go get the doctor." The Doctor came in scanned carefully with her own eyes and confirmed that there was something wrong with Elisa's heart. The next thing I know, I am scheduled to see the pediatric cardiologist the next day. 'What was wrong with my baby's heart? Could it be fixed? What was the prognosis? What were all the terms the doctor mentioned so I could remember to pillage the internet for them? Was this miracle going to be okay?'
That night I slept very little and endure a long night comforted by Oliva. The next day came and with echocardiogram we got the unsure at that time but correct diagnosis. Elisa had a severe Tetralogy of Fallot. She had a large VSD (Ventricular Septal Defect) and no flow going through where her Pulmonary Valve was supposed to be. The team was not sure if she had another significant issue known as MAPCAS (multiple aorticpulmonary Collateral Arteries or a PDA( (patent ductus arteriosus) which was even more rare. Hopes were that she was having some flow up a pulmonary valve which we later would learn never existed. We had two options as we would research. That particular cardiologist preferred the first which is called a BT Shunt or Blalock-Taussig Shunt. It would allow Elisa's heart to grow before the local surgeons could work on it but it would mean that Elisa's oxygenated blood would have been compromised. The second was a complete repair, which would be more risky but overall didn't seem to have as much risk in our opinions as opening up her heart twice in a year. As time grew closer we learned that she had an undersized pulmonary artery which would make complete repair to complicated where we lived so we opted for more opinions and found experts that would lead us to Lucille Packard Children's Hospital in Stanford California.
Throughout the rest of the pregnancy my fear was on edge the whole for all of my family as we worked together trying to establish the best care that we could. I felt robbed at times of a joyous pregnancy but both of my pregnancies had been complicated by morning sickness throughout most of the time and other concerns. It honestly felt like a sick nightmare throughout the entire ordeal. I felt so alone and afraid but was beginning to see that there were kids alive and thriving with Tetralogy of Fallot, even athletes. I began to see that Elisa could have a normal life hopefully if the ultrasound were off a little but we would not know any certainties until after she was born. I was ecstatic to find out the amniocentisis was clear and I thought that bridge had been crossed and would not be revisited. I was even told during an ultrasound that Elisa's stomach was enlarged but it was nothing of concern. I knew that was something significant but I put that away as a concern for later.
I was researching trying to see if there was anything that I could do even if it meant putting my life in danger to spare Elisa of the surgeries that she would endure once born. My husband, Lazaro and I scoured over medical data and interviews trying to do what we could for Elisa. The whole time, we worried if she was just going to be okay. I wanted this nightmare to be over and to wake up with healthy baby in me. The thoughts of my daughter not surviving terrified me to the core. I wanted to be so prepared and ready to help her battle but that isn't possible. The beginning of October, the month of Elisa's due date, we packed our bags and traveled our second journey to Palo Alto, California. I stayed behind with Oliva and my mother in that house full of so many miracles yet to be discovered.
We started off with a tour of the Ronald McDonald house and I immediately met two heart parents. One introduced me to another mother, who's daughter to gave me so much hope. She told me how her daughter had multiple CHD's (congenital heart defects) and was not predicted to live yet here she was getting her second surgery. She was still in CVICU (Cardiovascular Intensive Care Unit), but was under great hands for her age which was 5 or 6 months at that time. Hearing this mom talk of her daughter and everything she had been through seemed to open a light of great hope and reassurance within me. That month I made friends in that home that helped ease the tension that I had been feeling. I also saw a lot that made me fear for the worst yet hope for the best. One of the volunteer massage therapists gave me so much comfort one day when we were discussing my daughter. She said that her teacher had told her that, 'The human body is such a miraculous event. There are so many things that have to work together within our bodies that can go wrong that the fact that we are miracles to be able to live as long as we do is a miracle.' Yet we saw the Dalai Lama while staying there but the volunteer's words are the one's I will never forget that gave me the most hope and courage.
THE LABOR It was decided after trying to put it off that Elisa would be induced on her due date if it was safe. I tried all natural ways to induce her from eating various spices, acupuncture, massage therapy, and begging for pitocin even because my husband and I knew she would have had a better chance. The doctor's finally gave in and tried some very painful ways to induce me with various techniques. Finally on the third and last painful foley they managed to get my water to break. Unfortunately there was meconium present. Labor was intense and after 8-9 hours of battling the pitocin, I was very sure I wanted an epidural preferably a spinal. The gave me the epidural but it calmed me down for another 8 hours and then it wasn't phasing me anymore. I seldom spoke during the labor at all. Finally the doctor's began saying that if Elisa didn't drop soon they would do a c-section. The 23rd hour post waterbreak came and they were shocked to see that Elisa was ready to be born. They wanted me to wait because I had a fever to let the tylenol to work. At this point, I told the nurse very sternly, "Turn of that d---- pitocin." She threatened me with a c-section but turned it down to 50%. Well thirty minutes had passed and I had been secretly doing small pushes because I could not hold Elisa in any longer. As the doctor was gowning up they told me to push so I did my official first two pushes with great determination. Then the third push I gave them a quick warning as they weren't finished putting on their scrubs. I yelled, "She's coming out" They scrambled to catch her. She came out with the softest cry and they rushed her over to get her vitals and oxygen.
First breaths Elisa's first apgar was 8 out of 10 and was the same for the second apgar. Had we had known she had such a complex little heart, I shutter to think of what could have been her outcome. I got to kiss her before they whisked her away for testing and her bed in the NICU (Neonatal Intensive Care Unit) Elisa had to have a medication caled prostaglandin's put into her umblical cord through IV fluids that would eventually fall off because her heart as all babies had been overridden with the umbilical cord because she wasn't required to actually breath and oxygenate her own blood while developing in the womb. At any moment the override valve in her heart that allowed this development to happen could shut closed and she would suffocate to death so the hopes where that this medication would keep her heart in the in utero state until her first open heart surgery.
The echocardiograms confirmed everything that we had seen in utero and still we wouldn't be completely sure of anything until the surgeon, Dr. Hanley could open her up and see for himself. We didn't know when that would be. I lingered over her bed as much as my strength would allow me. When she was two day's old, I was discharged from the hospital and we were told that the following morning would be her first heart surgery. That morning we walked down to basement of the hospital and watched them take sweet little 7lb Elisa away to prep for surgery. We met all the doctor's who would be working on her tiny heart. As the doors closed behind her, I nearly collapsed in fear. I knew anything could happen and nothing was guaranteed. I had already learned that at that point by seeing what other's had gone through that anything could have happened. We waited and waited until finally around 7 hours later, Dr. Hanley returned to us. She had been on bypass for nearly 5 hours which meant that her heart and lungs were resting while a machine worked for her during the heart surgery. She had no place for even a pulmonary valve to go if she had one so he had to build her one. He had patched her large VSD and stitched a few other small holes. He had enlarged her pulmonary artery as well.
As harsh as this picture is to see it is nothing like seeing it in person. Elisa was so lifeless and we watched as they slowly weaned her off the ventilator which took a day. She began to show improvement of course the first one was her skin was pink. She began to open her eyes more and more even though she was so weak. She was a determined fighter.to be continued
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