Happy Valentine's Day!!!!
We were elated to be home from the hospital after 3 long weeks following Tristan's birth. the scariest thing about being home was it was just us. We knew Tristan was healthy and that he was stable to come home. We bought an Angel Care monitor that would make noise if he stopped breathing. That was enough comfort for us. Other than Scott sleeping on the floor in his room the 1st few nights. Tristan was on a very stricked feeding schedule. He was to have 2.5 oz of fortified formula (an extra half of scoop per ounce) every 2.5 hours even at night. This was so he wold continue to gain weight. he left the hospital only about 3 ounces under birth weight which wasn't too bad. Trying to get on a schedule where both Scott and I could get some sleep was a bit difficult. We would alternate feds so we would at least get 5 hours of sleep. Not that it really happened because for a while when it was time to get up we were both up checking to make sure he was in fact OK. After a little while we got into a routine at night. I was busy with follow up appointments and trying to find a pediatrician who knew what HLHS was. After some help from our Cardiologist we found a wonderful one. We saw her every week for awhile then went to every 2 weeks. After about 3 weeks we noticed that Tristan wasn't acting right, he was screaming inconsolably. I called my mom because Scott was at work. I put him in the bath and notices he has what looked like a pimple but bigger that was ready to pop at the top of his incision that was completely healed. We were 5 weeks out of surgery I mean i would have thought it would have shown up soon. So I called Scott, who came home from work. I was immediately on the phone with the NP of Cardiothoracic Surgery and she said bring him in there is a bed waiting for me. It was Mother's Day weekend. We arrived straight to the unit to find a Surgeon waiting for us. He took one look at it and said, "its a staph infection he needs IV antibiotics for 3 days then he can go home on oral ones.
So the Surgeon came and opened the spot and cleaned it out. All of that was not much fun even morphine didn't help the pain Tristan went through. So here we were only 3 weeks after leaving the hospital, back in for 4 days. I thought we have got to have a plan if we are going to be in and out like this. They told us we might but after how well he did after his 1st surgery i was in denial. Tristan was release 2 days after Mother's Day on Daddy's birthday. We were happy to arrive home to cake and balloons!!! It was May 15! We got back into our routine and all was well. Tristan was getting ready to be at Mommy and Daddy's wedding as we were getting married on the 15th of June. All was well for 2 months. Tristan continued to can an ounce a day and started to act like a "normal" baby would. I use "normal" very loosely as he is our norm. Doctors visits every week, Cardiologist visits every few weeks was just part of our routine. It was July and my parents were getting ready to move to Florida. I had planned a surprise going/35th anniversary party on the 21st for them. Old childhood friends and family were all coming.
Tristan's 1st family outing was to Celebrate my cousin Kevin's High School Graduation. He was passed around and played with. He had a great time. Everyone wanted to see him, hold him and hear his story again. We left there exhausted but it was great to have Tristan out and not stuck at home. We tried to get out to the mall and walk a few times a week. I refused to be confined to my house because he was doing so well. I was though very protective of people wanting to touch the "cute baby" but it was a lot fun. We were woken one morning with terrible news. My cousin who just graduated was killed by a drunk driver. So we spent more time with the family. We took Tristan with us to the viewing and the funeral as he was just as much a part of the family as everyone else. The thing that got me through this terrible tragedy was that now Tristan had(has) his very own Guardian Angel!!! I am sadden at the loss of my cousin and still think about him often but we are over joyed to share with Tristan all the fun things Kevin did. Kevin truly has helped us get through this road with Tristan.
On the July 20th Tristan had a different plan for us. He was turning blue around the mouth. We took him to the pediatrician who immediately sent us to CNMC because he was pulling and trying to catch his breathe.
We were admitted for tacypnea(labored breathing). It was suppose to be a short stay but it turned out to be a week long. Scott stayed with Tristan on Saturday as I had over 50 people coming to my parents house for a party. While Tristan was in the ER he was given a rectal temp...something I did twice a day to keep an eye on his temp because if it got above 100.2 we were to call CNMC. But something went wrong in the ER. They did it and he about jumped off the exam table. So we knew it was uncomfortable but didn't know it would eventually keep him in the hospital for 7 days. After they got his breathing under control he started having blood in his stool. Everyone was in to see us, from the Nutritionist to the GI docs all to tell me he had developed a milk allergy. Um...I don't think so. I fought it tooth and nail. We didn't come into the hospital for a bloody stool it happened after he got here so lets see what the cause could have been. I started writing things down that were different. 1st off he got poked in the butt, 2nd off he was on hospital fortified formula. Other than that nothing was really all that different besides sleeping in a different bed, having the alarms hooked all...all things that wouldn't cause blood in his stool. So i spoke with the nutritionist and she wanted to change his formula. I said no let me make his bottles and see what happens. I finally got to talk to the GI Dr and being 4 months old and just developing a milk allergy doesn't usually happen. I spoke with the Cardiologist and made it very clear that i wanted to file a complaint with someone about this and that i wasn't changing his formula until it was noted that me making it didn't help. Well guess what? I started making his formula and things started to get better. He was having mucus with a little bit of blood which is what happens when there is trauma to that area. The stools started firming up again and within 5 days there was no more blood. Chalk one up for MOM!!!! I was right. No need to change his formula.
Once we left the hospital our next visit would be an overnight for his Pre-Glenn Cardiac Cath. That was in August. So we were home for a month before we were back but it was a scheduled visit. Tristan has his Cath and then 2 weeks later, exactly 6 month from his Norwood, he was admitted for his Glenn. Tristan has his 2nd open heart at 6 months old.
I will write more about that later this week as the boys and I will be traveling to Daytona Beach for the Daytona 500 and to visit my parents.
Happy Valentines day to all my HEART BABIES!!!!!
Monday, February 14, 2011
Thursday, February 10, 2011
Our Story
In Honor of Congenital Heart Defect Awareness Week, which runs from February 7-14, I am going to share our story with you of how it was when we found out about Tristan.
It was March 2007 and I was counting down the days until I would get that phone call from the OB surgical scheduler giving me a date that he would be born. We had to do a schedule C section because his head was measuring huge and he wasn't dropping. I got the call on March 27th had to go to the hospital for all the pre-op workup stuff. We were totally excited that we finally had a date and that Tristan was going to have his 'own' birthday. When you come from a family as large as mine it is almost impossible to have your own birthday but we had a choice between a few dates and snuck right in between two of my Aunts birthdays! We got to the hospital around 1045am on Thursday March 29th and made our way up to the L&D floor. We got settled in and somehow my mom worked her way in to see us before the surgery. She had connections because she worked there. We went back into the OR at about 12:50pm and that's when all the fun started. They got my epidural in and then in came Scott to be a part of the happiest day of our life. Tristan came out at 1:19pm and was the most beautiful and perfect baby we had ever seen. He wasn't crying very much so they immediately moved to the isolet and started clearing his airway and cleaning him up. Is Apgar scores were 9 and 8. Then about 5 minutes later went to 8 and 7 because they noticed his ring and middle fingers on both hands were stuck together. We were told it was an easy fix and given a name of a few Doctors at Children's who could fix them. I was very sick from the anesthesia so holding Tristan wasn't an option for me but Scott got to hold him and feed and take care of me. He watch them bath him, check his color and temperature and do his little foot prints. He was given back to us just in time for me to start throwing up. We were kept in recovery for about 4 hours waiting for me to stop throwing up. No one as allowed in to see me because I was so sick but all I wanted was water which they wouldn't give me. Finally Scott went out to show the pictures of Tristan and came back with a bottle of water from my mom. I drank some and was soon feeling better. We were moved up to our room and Tristan fed again on a bottle. I was still too nauseated to put him to the boob because if I looked down I got really dizzy. We had a few visitors and at about 10 we tried to feed him again and he wouldn't wake up to do it. We thought he was just acting like his father did when he was a baby and you had to strip him down and poke his heel in order for him to wake up. Not so much for Tristan. At about 11pm they came in to check on us and weigh Tristan and that woke him up. We tried to feed him some more and he didn't want to have anything to do with it. So about 2am a nurses aide came in to ask if he had eaten, how much and when. We told her nothing since about 7pm and she said she was going to warm up the formula and if we didn't mind she would try to get him to eat. Scott and I were completely OK with her helping if she had tricks we were all about them. When took him from me and sat in the chair next to me and tried. She got a very uneasy look on her face and asked very calmly if she could take him to the nursery to be looked at because he wasn't about to suck, swallow and breath at the same time.
SO at 230am he was in the nursery with the charge nurse and we were resting a little thinking it was just a little fluid in his lungs because he was a C-section baby. To our surprise at 5:45am on the 30th I get a phone call from the NICU Dr telling me that and I quote, " Your son was born with half a heart and has to go to Children's National Medical Center for open heart surgery or he is going to die." WOW nice wake up call. She then proceeded to tell me to have my nurse get me ready to come down and see him before he was transported. I immediately told Scott what was going on and then called my mom. My mom immediately called the Nun at the hospital so we could have Tristan baptised before he left. I have never been so scared in my life. My OB called and as soon as I said Hello, he says, "i thought you were going to give me a bigger baby than 7lbs 11oz!" I immediately started crying and told him what was going on and he said everything would be fine he would figure out what was going on and call me back. Finally at 8am I got my wheelchair so they could take me down to the NICU to see Tristan. My parents were on their way as were Scott's parents, grandmother and my grandparents. The NICU as a 2 person policy, well that went out the window. We were taken into a very small room and shown a print out from google as to the the doctor was talking about. Tristan had Hypoplastic Left Heart Syndrome which we were told was a very rare form of heart defect and it required immediate surgery but also had a very high mortality rate. I really didn't care about what she had to say, all I wanted to do was see my baby boy. When we were done she told us that he was being worked on and that they were trying to get a central line in from his belly button but kept going into his liver instead. I just wanted to see him. So she let us in. It started out just Scott and I. I was horrified when I was wheeled in and saw my son laying in the isolet with a tube in his mouth, an iv in his hand and foot and the nurse trying to get another line in his belly button. He was ashen, not the pink little guy that left me a few hours ago. What had happened was they put him under an oxygen hood and he started to crash. Then in comes my parents. followed by the Nun and my grandparents. Tristan was baptised with my parents as his Godparents and then not long after that the AMAZING transport team from Children's showed up. We were told he would be taken to the Cardiac Intensive Care Unit where a team was waiting for him to admit him and assess his stability and we would talk to the surgeons very soon. I sent Scott and told him do not leave his side once you get to the hospital. I was told by the Transport Team that i would get a phone call in about 3 hours once they got him settled and stable. I was given phone numbers and then the NICU staff took a picture of Tristan and off he went. I went upstairs to my room and he left in his very 1st ambulance ride with Daddy not far behind.
Three hours passed with visit from the family and phone calls. My mom started a phone tree and my cousin Jessica stayed with me until I got news. I know it was very hard for everyone to come visit me and not see Tristan but it really helped me a ton. Three and a half hours passed an nothing so I decided to call the CICU and see what was going on. I got a receptionist and asked to speak to baby boy daniels' nurse. His nurse, Stefanie, picked up and I asked her how he was doing. Her exactly words were he is going great, but let me let you talk to Dad. Scott got on the phone and I could hear in his tone that things were a lot better. They had him all hooked up to everything and he even got his color back. Scott said he looks amazing and was opening his eyes and looking around. Then he said, by the way he has blue eyes! Scott stayed for a few more hours, got him tucked into bed and headed back to see me. He walked him hold something swaddled in a blanket with a hat on its head...my heart stopped. It was a teddy bear that he had gotten for me, well actually Tristan had gotten since it was in his isolet first. Scott came back with about 50 pictures of all the different things they were doing and he said you can call them anytime and as often as you want but get some rest we meet with the surgeons on Sunday. Friday nights sleep wasn't that fantastic lots of questions unanswered but a book from our Social Worker help explain things a lot better. Saturday comes around and more visitors come in and i wanted to get out of the room for a bit so I got dressed, and Scott wheeled me outside. It was a beautiful sunny day. I called often to check on him and he was stable and strong. He was the biggest newborn in the CICU. My Dr came in and said i will sign your discharges papers so you can leave now if you want. After some thought one more night before a long road would be much needed. So she signed them so i could leave either Saturday or Sunday, whatever I decided. Scott was back and forth between Silver Spring and DC on Saturday. Sunday gets here and we are ready to leave at about 10:30am to go to CNMC to see my little man. My mom meets us at Holy Cross to take all our stuff home and off Scott and I go.
Upon arriving at CNMC we were met by a CICU nurse with a wheelchair to take me up to see Tristan. We go up the elevators and turn a few corners and right in front of us was the CICU. I started to tear up. She waited outside for Scott to get there so we could go in together. We went in and turned the corner and there was my precious little man. He was beautiful and pink. He looked amazing. Not long after we got there it was time for out meetings with various people. We were sitting with a Cardiologist in a very small consult room when we were explained what was wrong with Tristan's heart. We were also given multiple options, fatality and recovery rates and quality of life information. None of that was as important as saving my little boys life. We opted for the 3 step surgeries. The first step was The Norwood Procedure.
Hypoplastic Left Heart Syndrome (HLHS) is one of the most complex cardiac defects seen in the newborn and remains probably the most challenging to manage of all congenital heart defects. It is one of a group of cardiac anomalies that can be grouped together under the description "single ventricle" defects.
In a child with Hypoplastic Left Heart Syndrome, all of the structures on the left side of the heart (the side which receives oxygen-rich blood from the lungs and pumps it out to the body) are severely underdeveloped.
The mitral and aortic valves are either completely "atretic" (closed), or they are very small. The left ventricle itself is tiny, and the first part of the aorta is very small, often only a few millimeters in diameter.
This results in a situation where the left side of the heart is completely unable to support the circulation needed by the body's organs, though the right side of the heart (the side that delivers blood to the lungs) is typically normally developed.
Blood returning from the lungs to the left atrium must pass through an atrial septal defect (ASD) to the right side of the heart.
The right ventricle must then do a "double duty" of pumping blood both to the lungs (via the pulmonary artery) and out to the body (via a patent ductus arteriosus (PDA)). The patent ductus arteriosus, a normal structure in the fetus, is often the only pathway through which blood can reach the body from the heart. When the ductus arteriosus begins to close, as it typically does in the first days of life, the blood flow to the body will severely diminish resulting in dangerously low blood flow to vital organs and leading to shock. Without treatment, Hypoplastic Left Heart Syndrome is uniformly fatal, often within the first hours or days of life.
from: http://www.cincinnatichildrens.org/health/heart-encyclopedia/anomalies/hlhs.htm
We were told that Tristan would most likely have surgery Monday afternoon or Tuesday morning but that we would know something on Monday when Dr. Richard Jonas came to look at him. Dr. Jonas is the Cardiothoracic Surgeon that will perform all three surgeries. So the waiting begins. Monday rolls around and no surgery, Tuesday rolls around, no surgery. All the while we were told it will be tomorrow. COme to find out Tristan was responding to the medicine that was keeping him alive and was very stable so they had to take the other sick Children first. OK fine I get that, but come on we were very impatient but knew there was a reason for all this. We got news on Wednesday that Tristan would go into surgery first case on Friday morning. Good Friday none the less so we were OK. Surgery took about 2 hours then it was another 45 mins afterwards until we could see him. We were told prior to surgery that his chest would be left open to allow the heart to swell because of the placement of the shunt. We walk in to see him and there he is laying paralyzed(drug induced) but peaceful. His chest was left open but he had a few more tubes and wires in him. They moved his breathing tube from his mouth to his nose so he could suck on a paci. We could actually see his heart beating...His ACTUAL heart it was by far the coolest thing I have ever seen. He wold remain paralyzed for 2-3 days until they close his chest. We signed consent forms on Saturday to have it closed when he was ready. Easter Sunday rolls around and he is still doing well but out of the 24 hours anything can happen period. Unfortunately Scott had to go back to work on Monday and thankfully I was staying at the Ronald McDonald House not far from the hospital. I would shuttle in and whoever was there visiting in the evening would bring me back. They closed Tristan's chest on Monday and lots of things started changing. His chest tubes were pulled, some lines were removed and then my favorite day of all time Friday April 13th I walk in to the CICU to see my beautiful boy smiling at me from behind his paci with only oxygen in his nose. He was breathing on his own. ON Saturday April 14th I got to hold him 2 weeks and 2 days after he left my arms for this journey. That evening we were sent to the PICU which was step down care before he was admitted to the floor. We were in the PICU for 3 days then one to the floor we went and what a shock. There isn't a nurse at the bedside at all times. Tristan was doing amazing. He was drinking 2.5oz of breast milk every 2.5 hours and was looking around. Once we were on the floor things moved even faster. We were only on the floor for 4 days and we were sent home. Tristan had his pacer wires taken out and his stitches removed on Friday the 20th and we were out the doors on our way on Saturday the 21st. It was one hell of a journey and all the way through we had support from our friends and family near and far. We never lost hope or gave up. Tristan is a very powerful little boy too. During all this Scott and I never once questioned why us. We never once lost hope or felt lost. We had each other to lean on and our family and friends as well. I will post later how things were once we got home and before surgery number 2.
It was March 2007 and I was counting down the days until I would get that phone call from the OB surgical scheduler giving me a date that he would be born. We had to do a schedule C section because his head was measuring huge and he wasn't dropping. I got the call on March 27th had to go to the hospital for all the pre-op workup stuff. We were totally excited that we finally had a date and that Tristan was going to have his 'own' birthday. When you come from a family as large as mine it is almost impossible to have your own birthday but we had a choice between a few dates and snuck right in between two of my Aunts birthdays! We got to the hospital around 1045am on Thursday March 29th and made our way up to the L&D floor. We got settled in and somehow my mom worked her way in to see us before the surgery. She had connections because she worked there. We went back into the OR at about 12:50pm and that's when all the fun started. They got my epidural in and then in came Scott to be a part of the happiest day of our life. Tristan came out at 1:19pm and was the most beautiful and perfect baby we had ever seen. He wasn't crying very much so they immediately moved to the isolet and started clearing his airway and cleaning him up. Is Apgar scores were 9 and 8. Then about 5 minutes later went to 8 and 7 because they noticed his ring and middle fingers on both hands were stuck together. We were told it was an easy fix and given a name of a few Doctors at Children's who could fix them. I was very sick from the anesthesia so holding Tristan wasn't an option for me but Scott got to hold him and feed and take care of me. He watch them bath him, check his color and temperature and do his little foot prints. He was given back to us just in time for me to start throwing up. We were kept in recovery for about 4 hours waiting for me to stop throwing up. No one as allowed in to see me because I was so sick but all I wanted was water which they wouldn't give me. Finally Scott went out to show the pictures of Tristan and came back with a bottle of water from my mom. I drank some and was soon feeling better. We were moved up to our room and Tristan fed again on a bottle. I was still too nauseated to put him to the boob because if I looked down I got really dizzy. We had a few visitors and at about 10 we tried to feed him again and he wouldn't wake up to do it. We thought he was just acting like his father did when he was a baby and you had to strip him down and poke his heel in order for him to wake up. Not so much for Tristan. At about 11pm they came in to check on us and weigh Tristan and that woke him up. We tried to feed him some more and he didn't want to have anything to do with it. So about 2am a nurses aide came in to ask if he had eaten, how much and when. We told her nothing since about 7pm and she said she was going to warm up the formula and if we didn't mind she would try to get him to eat. Scott and I were completely OK with her helping if she had tricks we were all about them. When took him from me and sat in the chair next to me and tried. She got a very uneasy look on her face and asked very calmly if she could take him to the nursery to be looked at because he wasn't about to suck, swallow and breath at the same time.
SO at 230am he was in the nursery with the charge nurse and we were resting a little thinking it was just a little fluid in his lungs because he was a C-section baby. To our surprise at 5:45am on the 30th I get a phone call from the NICU Dr telling me that and I quote, " Your son was born with half a heart and has to go to Children's National Medical Center for open heart surgery or he is going to die." WOW nice wake up call. She then proceeded to tell me to have my nurse get me ready to come down and see him before he was transported. I immediately told Scott what was going on and then called my mom. My mom immediately called the Nun at the hospital so we could have Tristan baptised before he left. I have never been so scared in my life. My OB called and as soon as I said Hello, he says, "i thought you were going to give me a bigger baby than 7lbs 11oz!" I immediately started crying and told him what was going on and he said everything would be fine he would figure out what was going on and call me back. Finally at 8am I got my wheelchair so they could take me down to the NICU to see Tristan. My parents were on their way as were Scott's parents, grandmother and my grandparents. The NICU as a 2 person policy, well that went out the window. We were taken into a very small room and shown a print out from google as to the the doctor was talking about. Tristan had Hypoplastic Left Heart Syndrome which we were told was a very rare form of heart defect and it required immediate surgery but also had a very high mortality rate. I really didn't care about what she had to say, all I wanted to do was see my baby boy. When we were done she told us that he was being worked on and that they were trying to get a central line in from his belly button but kept going into his liver instead. I just wanted to see him. So she let us in. It started out just Scott and I. I was horrified when I was wheeled in and saw my son laying in the isolet with a tube in his mouth, an iv in his hand and foot and the nurse trying to get another line in his belly button. He was ashen, not the pink little guy that left me a few hours ago. What had happened was they put him under an oxygen hood and he started to crash. Then in comes my parents. followed by the Nun and my grandparents. Tristan was baptised with my parents as his Godparents and then not long after that the AMAZING transport team from Children's showed up. We were told he would be taken to the Cardiac Intensive Care Unit where a team was waiting for him to admit him and assess his stability and we would talk to the surgeons very soon. I sent Scott and told him do not leave his side once you get to the hospital. I was told by the Transport Team that i would get a phone call in about 3 hours once they got him settled and stable. I was given phone numbers and then the NICU staff took a picture of Tristan and off he went. I went upstairs to my room and he left in his very 1st ambulance ride with Daddy not far behind.
Three hours passed with visit from the family and phone calls. My mom started a phone tree and my cousin Jessica stayed with me until I got news. I know it was very hard for everyone to come visit me and not see Tristan but it really helped me a ton. Three and a half hours passed an nothing so I decided to call the CICU and see what was going on. I got a receptionist and asked to speak to baby boy daniels' nurse. His nurse, Stefanie, picked up and I asked her how he was doing. Her exactly words were he is going great, but let me let you talk to Dad. Scott got on the phone and I could hear in his tone that things were a lot better. They had him all hooked up to everything and he even got his color back. Scott said he looks amazing and was opening his eyes and looking around. Then he said, by the way he has blue eyes! Scott stayed for a few more hours, got him tucked into bed and headed back to see me. He walked him hold something swaddled in a blanket with a hat on its head...my heart stopped. It was a teddy bear that he had gotten for me, well actually Tristan had gotten since it was in his isolet first. Scott came back with about 50 pictures of all the different things they were doing and he said you can call them anytime and as often as you want but get some rest we meet with the surgeons on Sunday. Friday nights sleep wasn't that fantastic lots of questions unanswered but a book from our Social Worker help explain things a lot better. Saturday comes around and more visitors come in and i wanted to get out of the room for a bit so I got dressed, and Scott wheeled me outside. It was a beautiful sunny day. I called often to check on him and he was stable and strong. He was the biggest newborn in the CICU. My Dr came in and said i will sign your discharges papers so you can leave now if you want. After some thought one more night before a long road would be much needed. So she signed them so i could leave either Saturday or Sunday, whatever I decided. Scott was back and forth between Silver Spring and DC on Saturday. Sunday gets here and we are ready to leave at about 10:30am to go to CNMC to see my little man. My mom meets us at Holy Cross to take all our stuff home and off Scott and I go.
Upon arriving at CNMC we were met by a CICU nurse with a wheelchair to take me up to see Tristan. We go up the elevators and turn a few corners and right in front of us was the CICU. I started to tear up. She waited outside for Scott to get there so we could go in together. We went in and turned the corner and there was my precious little man. He was beautiful and pink. He looked amazing. Not long after we got there it was time for out meetings with various people. We were sitting with a Cardiologist in a very small consult room when we were explained what was wrong with Tristan's heart. We were also given multiple options, fatality and recovery rates and quality of life information. None of that was as important as saving my little boys life. We opted for the 3 step surgeries. The first step was The Norwood Procedure.
Hypoplastic Left Heart Syndrome / Norwood Operation
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Hypoplastic Left Heart Syndrome (HLHS) is one of the most complex cardiac defects seen in the newborn and remains probably the most challenging to manage of all congenital heart defects. It is one of a group of cardiac anomalies that can be grouped together under the description "single ventricle" defects.
 Example of a normal heart |  Example of Hypoplastic Left Heart Syndrome |
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In a child with Hypoplastic Left Heart Syndrome, all of the structures on the left side of the heart (the side which receives oxygen-rich blood from the lungs and pumps it out to the body) are severely underdeveloped.
The mitral and aortic valves are either completely "atretic" (closed), or they are very small. The left ventricle itself is tiny, and the first part of the aorta is very small, often only a few millimeters in diameter.
This results in a situation where the left side of the heart is completely unable to support the circulation needed by the body's organs, though the right side of the heart (the side that delivers blood to the lungs) is typically normally developed.
Blood returning from the lungs to the left atrium must pass through an atrial septal defect (ASD) to the right side of the heart.
The right ventricle must then do a "double duty" of pumping blood both to the lungs (via the pulmonary artery) and out to the body (via a patent ductus arteriosus (PDA)). The patent ductus arteriosus, a normal structure in the fetus, is often the only pathway through which blood can reach the body from the heart. When the ductus arteriosus begins to close, as it typically does in the first days of life, the blood flow to the body will severely diminish resulting in dangerously low blood flow to vital organs and leading to shock. Without treatment, Hypoplastic Left Heart Syndrome is uniformly fatal, often within the first hours or days of life.
from: http://www.cincinnatichildrens.org/health/heart-encyclopedia/anomalies/hlhs.htm
We were told that Tristan would most likely have surgery Monday afternoon or Tuesday morning but that we would know something on Monday when Dr. Richard Jonas came to look at him. Dr. Jonas is the Cardiothoracic Surgeon that will perform all three surgeries. So the waiting begins. Monday rolls around and no surgery, Tuesday rolls around, no surgery. All the while we were told it will be tomorrow. COme to find out Tristan was responding to the medicine that was keeping him alive and was very stable so they had to take the other sick Children first. OK fine I get that, but come on we were very impatient but knew there was a reason for all this. We got news on Wednesday that Tristan would go into surgery first case on Friday morning. Good Friday none the less so we were OK. Surgery took about 2 hours then it was another 45 mins afterwards until we could see him. We were told prior to surgery that his chest would be left open to allow the heart to swell because of the placement of the shunt. We walk in to see him and there he is laying paralyzed(drug induced) but peaceful. His chest was left open but he had a few more tubes and wires in him. They moved his breathing tube from his mouth to his nose so he could suck on a paci. We could actually see his heart beating...His ACTUAL heart it was by far the coolest thing I have ever seen. He wold remain paralyzed for 2-3 days until they close his chest. We signed consent forms on Saturday to have it closed when he was ready. Easter Sunday rolls around and he is still doing well but out of the 24 hours anything can happen period. Unfortunately Scott had to go back to work on Monday and thankfully I was staying at the Ronald McDonald House not far from the hospital. I would shuttle in and whoever was there visiting in the evening would bring me back. They closed Tristan's chest on Monday and lots of things started changing. His chest tubes were pulled, some lines were removed and then my favorite day of all time Friday April 13th I walk in to the CICU to see my beautiful boy smiling at me from behind his paci with only oxygen in his nose. He was breathing on his own. ON Saturday April 14th I got to hold him 2 weeks and 2 days after he left my arms for this journey. That evening we were sent to the PICU which was step down care before he was admitted to the floor. We were in the PICU for 3 days then one to the floor we went and what a shock. There isn't a nurse at the bedside at all times. Tristan was doing amazing. He was drinking 2.5oz of breast milk every 2.5 hours and was looking around. Once we were on the floor things moved even faster. We were only on the floor for 4 days and we were sent home. Tristan had his pacer wires taken out and his stitches removed on Friday the 20th and we were out the doors on our way on Saturday the 21st. It was one hell of a journey and all the way through we had support from our friends and family near and far. We never lost hope or gave up. Tristan is a very powerful little boy too. During all this Scott and I never once questioned why us. We never once lost hope or felt lost. We had each other to lean on and our family and friends as well. I will post later how things were once we got home and before surgery number 2.
Tuesday, February 8, 2011
Welcome
Hello,
I am a mother of an almost four year old with Hypoplastic Left Heart Syndrome. I decided after reading a few post on other sites about the struggles parents with HLHS children are having, to post ideas, thoughts and experiences for all to see. I have heard horror stories and read articles that give miss information about what these children will be able to do when they grow up. I am going to try and bridge that gap for some. I will also be posting help ideas on how to deal with certain situations as I know that all cases are unique but maybe a little advise from someone who has been through this will help another family deal with thier situation. We had such an amazing yet frightening journey and I will share our story with you and how we dealt with it at the time and how things are now. I hope to have lots of followers but if only a few that is ok too. I will be enlisting help from close friends with children with HLHS and also other Congenital Heart Defects. I chose to start this now in honor of National Heart Month! I hope you find this helpful or just a fun and informative read!
I am a mother of an almost four year old with Hypoplastic Left Heart Syndrome. I decided after reading a few post on other sites about the struggles parents with HLHS children are having, to post ideas, thoughts and experiences for all to see. I have heard horror stories and read articles that give miss information about what these children will be able to do when they grow up. I am going to try and bridge that gap for some. I will also be posting help ideas on how to deal with certain situations as I know that all cases are unique but maybe a little advise from someone who has been through this will help another family deal with thier situation. We had such an amazing yet frightening journey and I will share our story with you and how we dealt with it at the time and how things are now. I hope to have lots of followers but if only a few that is ok too. I will be enlisting help from close friends with children with HLHS and also other Congenital Heart Defects. I chose to start this now in honor of National Heart Month! I hope you find this helpful or just a fun and informative read!
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