Amber's Chd site

<body topmargin=0 leftmargin=0 marginheight=0 marginwidth=0><script> (function(i,s,o,g,r,a,m){i['GoogleAnalyticsObject']=r;i[r]=i[r]||function(){ (i[r].q=i[r].q||[]).push(arguments)},i[r].l=1*new Date();a=s.createElement(o), m=s.getElementsByTagName(o)[0];a.async=1;a.src=g;m.parentNode.insertBefore(a,m) })(window,document,'script','//www.google-analytics.com/analytics.js','ga'); ga('create', 'UA-47423994-1', 'fortunecity.ws'); ga('send', 'pageview'); </script> <center> <br> <div> <script language="javascript" type="text/javascript" src="http://ad.broadcaststation.net/ads/show_ad.php?width=728&height=90"></script> </div> </center> <table cellpadding=0 cellspacing=0 border=0><tr> <td valign="top" colspan=2 height=90 BGCOLOR="#006699" TEXT="#080000" bgproperties="fixed" background="02c285a1erlcgo.gif"> <div> <B>Amber's Chd site</B></div> <bR> <div> </div> </td> </tr><tr> <td valign="top" width=210 BGCOLOR="#FFCC66" TEXT="#080000" background="02ad2c00dkelyh.gif"> <div> <B><IMG SRC="046c88f0.jpg" border=0 width="200" height="143" ALIGN="BOTTOM" HSPACE="0" VSPACE="0"></B></div> <div> <B>This is me at 3 weeks old and right before my first surgery. Ligation of the patent ductus arteriosis. I had to have that pesky NG tube as I was to weak to eat much on my own.</B><FONT SIZE="3" COLOR="#003399" FACE="Arial" ><B> </B></FONT></div> <bR> <bR> </td> <td valign="top" height=390 BGCOLOR="#FFFFFF" TEXT="#080000"> <div>  <embed src="HTMLobj-108/sailing.mid" autostart="true" loop="true" width="145" height="70">  <IMG SRC="082c8620.jpg" border=0 width="200" height="98" ALIGN="BOTTOM" HSPACE="0" VSPACE="0"></div> <bR> <bR> <div> <IMG SRC="0803b3a0.jpg" border=0 width="315" height="314" ALIGN="BOTTOM" HSPACE="0" VSPACE="0"></div> <div> This is my square on the CHD Awareness quilt (I think it is on quilt 17)</div> <div> .</div> <bR> <div> <A HREF="id3.htm" TARGET="_top" TITLE="My first year of life in pictures"><U><B>My first year of life in pictures</B></U></A></div> <div> <A HREF="id4.htm" TARGET="_top" TITLE="My Heart defect, Procedures I have had a"><U><B>My Heart defect, Procedures I have had and terminology</B></U></A></div> <div> <A HREF="id6.htm" TARGET="_top" TITLE="Ambers wish"><U><B>Ambers wish</B></U></A></div> <div> <A HREF="id2.htm" TARGET="_top" TITLE="Auntie Amber"><U><B>Auntie Amber</B></U></A></div> <div> <A HREF="id15.htm" TARGET="_top" TITLE="Amber Updates"><U><B>Amber Updates</B></U></A></div> <div> <A HREF="id16.htm" TARGET="_top" TITLE="Contact Us"><U><B>Contact Us</B></U></A></div> <bR> <bR> <bR> <div> It all started in July of 1986. I came into the world via cesarean section at 6:31 p.m. weighing 4lbs and 11oz and measuring 17". I was 6 weeks premature. After much prompting I let out a cry and then immediately had to be resuscitated. At first my doctors thought my breathing problems were related to my being premature. They quickly realized that more was going on than just breathing difficulties. Within a few hours of my birth I was whisked away by ambulance to the nearest children's hospital - Vanderbilt University Medical Center in Nashville TN. My mom had to stay at the hospital I was born at which was about 30 miles away. She was pretty scared. The day after I was born the doctors at Vanderbilt called and asked my mom's permission to do a test called a <FONT SIZE="3" COLOR="#0000FF" FACE="Arial" ><A HREF="id4_cardiac_catheterization_a_vein_andor.htm" TARGET="_top" TITLE="My Heart defect, Procedures I have had a"><U><B><U>Cardiac Catheterization </U></B></U></A><B><U>.</U></B></FONT><B> </B>This is how the doctors found out that I was born with a heart defect called<FONT SIZE="3" COLOR="#0000FF" FACE="Arial" ><U> </U><U></U><A HREF="id4_tga___transposition_of_the_great.htm" TARGET="_top" TITLE="My Heart defect, Procedures I have had a"><U><B><U>Transposition of the Great Arteries</U></B></U></A></FONT>. The Pediatric cardiologists also noticed that I had a <FONT SIZE="3" COLOR="#0000FF" FACE="Arial" ><A HREF="id4_vsd.htm" TARGET="_top" TITLE="My Heart defect, Procedures I have had a"><U><B><U>VSD</U></B></U></A></FONT> and an<FONT SIZE="3" COLOR="#0000FF" FACE="Arial" ><U> </U><U></U><A HREF="id4_asd.htm" TARGET="_top" TITLE="My Heart defect, Procedures I have had a"><U><B><U>ASD</U></B></U></A></FONT>.<B> </B>It was 2 days before my mom was released and was able to come and see me in the NICU(Neonatal Intensive Care Unit). She said that was a tough time. There were lots of rules to follow at the NICU. First my mom had to wash her hands very well and put on a gown before she could come and see me. The NICU also had a strict policy on visitation. There were lots of wires and tubes and monitors beeping. I was, at 4 lbs 11oz, one of the biggest babies in there. I had to stay there for the first 4 days of my life. I was then moved to the Pediatric floor of the hospital. Each day my parents would come and see me. Each day they were told I couldn't go home yet. It was very frustrating for my parents but they wanted me to be well so they were patient. When I was about 3 weeks old I started losing weight. My weight dropped to about 2 pounds. One of my nurses (Angel was her name) told my mom I was the smallest baby they had ever had on the floor. The doctors discovered that my<FONT SIZE="3" COLOR="#000080" FACE="Arial" ><B> </B><B></B></FONT><FONT SIZE="3" COLOR="#0000FF" FACE="Arial" ><A HREF="id4_patent_ductus_.htm" TARGET="_top" TITLE="My Heart defect, Procedures I have had a"><U><B><U>ductus arteriosis</U></B></U></A></FONT> had not closed. At 3 1/2 weeks I had the surgery called ligation of the patent ductus. Thankfully I did very well. I began to gain weight again and was finally able to leave the hospital at 5 1/2 weeks old, but not with out strings. My mom had to learn to insert an<B> </B><FONT SIZE="3" COLOR="#0000FF" FACE="Arial" ><A HREF="id4_ng_tube_.htm" TARGET="_top" TITLE="My Heart defect, Procedures I have had a"><U><B><U>NG tube</U></B></U></A></FONT><B>. </B>I needed the NG tube because I would tire very easily and not eat well. The doctors said that without the NG tube I would use up too many calories eating and not gain weight. In addition to the NG tube my mom had to mix my formula with a special powder so that my formula was higher in calories than normal. I needed to gain weight and get ready for the open heart surgery the doctors said I would need before I turned one. My parents also had to learn about the medications I would need to help me survive. I was on digoxin (heart medication) , lasix (diuretic) to reduce fluid retention and potassium(to replace what the lasix took out of me). The next 4 1/2 months would fly by and almost be a blur for my parents. They included doctors visits for me, a <FONT SIZE="3" COLOR="#0000FF" FACE="Arial" ><A HREF="id4_kangaroo_pump.htm" TARGET="_top" TITLE="My Heart defect, Procedures I have had a"><U><B><U>kangaroo pump</U></B></U></A></FONT><FONT SIZE="3" COLOR="#000080" FACE="Arial" ><A HREF="id4_kangaroo_pump.htm" TARGET="_top" TITLE="My Heart defect, Procedures I have had a"><U>,</U></A> </FONT>and a few more hospital stays. In November of 1986 I had my second cardiac catheterization. I had to stay in the hospital for 3 days. I was also put on the Kangaroo feeding pump. I would eat by bottle and NG tube during the day and at night be hooked up to the Kangaroo pump which continuously dripped formula into my NG tube. I slept so soundly at night my mom would sleep with her hand on my heart just to be sure it was still beating. In the first weeks of January of 1987 I went into the hospital to be weaned off of the Kangaroo pump. That was a four day stay. My next hospital stay would be about 1 week later. It was time for me to have the open heart surgery I needed to survive. I had gained all the weight I could (I weighed about 9 1/2 lbs at this point) and the doctors said the surgery could not be put off any longer. My next surgery was <FONT SIZE="3" COLOR="#0000FF" FACE="Arial" ><A HREF="id4_the_senning.htm" TARGET="_top" TITLE="My Heart defect, Procedures I have had a"><U><B><U>The Senning</U></B></U></A><B><U>.</U></B></FONT><B> </B>My mom and I went to the hospital the day before my surgery. We settled in our room and then we attended a class just for parents and children that told us what to expect the day of surgery. It was helpful and reassuring to my mom to know what to expect. My mom also met other parents whose children were having surgery the same day as me. The parents immediately formed a bond only parents of children having surgery can. My mom and those other parents knew they'd be seeing alot of each other in the SICU (Surgical Intensive Care Unit) waiting room. The day of my surgery we woke up early about 6 a.m. The doctors gave me medicine to make drowsy so I wouldn't stress out too much. As you can imagine by this point I wasn't real fond of doctors. I'd been heel stuck for blood so many times that even the alcohol prep rubbed against my heel made my cry. My mom was allowed to stay with me until I fell asleep. She then went on to the SICU waiting room. It was a long wait. My surgery was scheduled to start about 9 a.m. The doctors had explained to my mom that my body temperature would be cooled down and that I would be in an almost coma like state. I would also have to be put on the heart-lung machine during the surgery. My pediatrician Dr. K. Timothy North made a special visit to my mom during the surgery to give her an update on my condition, nurses also came out and gave my mom updates through out the day. Everything was going well. Mom passed the time talking with other parents whose children were also having surgery and talking with friends who came by to lend support. The surgery lasted several hours but my mom was finally allowed to see me in the SICU late in the afternoon. My face was so swollen after surgery that mom had to double check to see if it was really me. By the next day I was starting to come around. I had tubes and wires everywhere. A couple of them were chest tubes to drain the extra fluid out of me. I also had an external pace maker. The day after surgery I was still intubated and it was hard for mom to see me like that. She remembers watching me cry but there was no sound. She said I wouldn't look at her either. Guess I was mad at her for making me go through all that even though it wasn't her fault. Finally after 4 days and with most of the wires and tubes off and out I was allowed to go back up to the floor I was on before my surgery with my mom's promise that she would stay in the room with me. They didn't have to twist her arm too hard! She was happy to stay. Happy I was alive and doing well and hopeful for my future. I was allowed to leave the hospital only 9 days after surgery. My only complication was extra fluid in my lungs which made me sound really congested. I was off of all medication following my surgery. I recovered at an amazing rate. At just 2 weeks after my surgery I was rolling over again and eating like I never had before. Mom remembers that after surgery the sound of my cry was stronger and though it seems funny that was a good thing. I am 15 now and haven't had too many problems. I had pneumonia at age 4 and have had to have regular cardiology checkups yearly (I missed a couple of years through no fault of my own). I was given the go ahead to play sports at age 11 and played softball. This year I had a major asthma attack and ended up spending the night in the hospital. I have also recently had to go back on medication. Digoxin(heart medicine) and Lisinipril(blood pressure medication). I also have flovent and albuteral inhalers for my asthma and take zrytec for my allergies. I just had a tread mill test in Oct. and I did very well (managed to stay on a full 7 minutes). I will have to wear the <FONT SIZE="3" COLOR="#0000FF" FACE="Arial" ><A HREF="id4_holter_monitor.htm" TARGET="_top" TITLE="My Heart defect, Procedures I have had a"><U><B><U>holter </U></B></U></A></FONT><FONT SIZE="3" COLOR="#000080" FACE="Arial" ><B> <A NAME="monitor_again_soon___hopefully_if_the_1"><IMG BORDER="0" SRC="1x1.gif" HEIGHT="1" ALIGN="bottom" WIDTH="1" HSPACE="0" VSPACE="0" ></A></B></FONT><FONT SIZE="3" COLOR="#0000FF" FACE="Arial" ><B><U>monitor</U></B></FONT> again soon. Hopefully if the medication continues to help me I will not have to have surgery for awhile. I do get discouraged sometimes about the things I can't do but then my mom reminds me of all I can do. I am a sophomore in high school. I have a boyfriend. I am also in marching band. My life is a blessing.</div> <div> <A HREF="id3.htm" TARGET="_top" TITLE="My first year of life in pictures"><U><B><U>Next</U></B></U></A></div> <bR> <bR> <bR> </td> </tr></table></body>