Reflections

It has been nearly 9 months since our daughter Eva Joy was born...9 months! I just can't believe it. I also have a hard time believing that it has almost been 7 months since she passed away...Seems just like yesterday! A complete joy and a complete devastation all in one year. A year that I will NEVER forget, but also a year I would NEVER want to re-live again. People ask me all the time, "How do you do it?" You must be so strong"...(sigh)...How did we do it? How did we get through one of the worst years of our lives and come out still surviving? All In 1 year, my husband, Brian and I faced so much joy and then complete and utter loss all in a span of 12 months... In September 2010, we were so excited that after 9 long months of trying that we were pregnant! At our 20 week anatomy scan we were told we were having a baby girl! I knew it all along! We were also told some very disheartening and terrible news. We found out that she was very sick with a severe heart defect called Hypoplastic Left Heart Syndrome...Further tests (amniocentesis) also showed that Eva Joy had a very rare chromosome deletion on her 4th chromosome. We were in shock and we were very scared. We were given the option to terminate the pregnancy but after doing research we knew Eva Joy would have to face open heart surgeries to fix her heart defect but there was HOPE! Many infants with HLHS make it through the open heart operations. There was NO doubt...we were going forward with the pregnancy. Yes,it would be a rough road, but if other babies can do it, so can we, so could our Eva Joy! At 31 weeks into the pregnancy I went on hospital bed rest with preterm labor. We needed Eva Joy to stay in as long as possible. Our goal was to get to 36 weeks, then both of us (while she was still in the womb) would be transfered to the University of Michigan's Mott Children's Hospital in Ann Arbor which is an hour drive away by ambulance. This is where Eva Joy would have her first open heart procedure at day 3 of life. I had her via c-section on May 17, 2011, a day after an ambulance transported us from Detroit to Ann Arbor. Eva Joy was 5 pounds and 3 ounces and for such a heart sick baby and a 36 weeker, she gave a good little cry! The c-section was rough. I had a hard time recovering as I was in so much pain and I was swollen and could barely walk afterwards. The dream of having my baby bedside after delivery has never been a reality for me. I was in a hospital bed while Eva Joy was in the NICU attached to so many tubes and wires and a ventilator and I couldn't even get out of bed until the next day to see her. Brian was running back and forth to the NICU and my recovery room to give me updates. I was so sad and I knew Eva Joy was so sick. It was so hard to be so far away from home. I wanted my family with us. I wanted my 22 month old son, Blake. He was home with my Mom and he was so confused. He knew his Mommy was away for weeks at the hospital, but I am still not sure if he knew why. I wanted him to be able to see his baby sister. Instead he and my Mom stayed an hour away at my house while Brian and I were starting to live out our nightmare...Brian took FMLA from work and my Mom continued to watch Blake at our house. We stayed at the Ronald McDonald house next to the hospital, We ended up doing this for nearly 100 days. When FMLA was no longer an option and the bills started to pile up, Brian had no choice but to go back to work. Brian and I would split our time at the hospital between home and the Ronald McDonald house. Brian would leave for work at the early hours of the morning from the hospital to go to work an hour away and drive right back there at night to be with Eva Joy all through the week. On Friday Brian would come home and I would then go spend the weekend with Eva Joy for my turn at the hospital. For nearly 100 days we did this. We watched her fight for her life. We watched her little body fight through open heart surgery, have a tracheotomy, two strokes, horrible feeding issues, cath lab procedures and then watch her go into cardiac arrest and die...sigh. So, back to the question..How did we do this? How did we come out of this and survive? We just did. We fought every single second for our daughter just as she fought for every single heart beat and breath...It was devastating...Eva Joy was alive for nearly 3 months. She is and always will be our strength...That baby girl is so beautiful and we only hope and pray that we will see her again somehow, someday, someplace... In reflection, we have not had a great track record when it comes to trying to build our family. Eva Joy was our 4th pregnancy. I have had 1 miscarriage, 1stillbirth (Jena Rose), 1 miracle 35 weeker (Blake) and an 1 infant death (Eva Joy). You have heard the story of Eva Joy. Briefly, I will reflect on the others. Each pregnancy for me is high risk because I have certain issues that put my life in jeopardy when I am pregnant. First, I was born with a structural congenital heart defect. I have a condition known as BAV. It stands for Bicuspid Aortic Valve. I was born with two leaflets on my Aortic Valve instead of the normal three. Over time, this caused my Aortic Valve to become very insufficient and leaky. My heart had to work extra hard to pump blood because my valve was leaking back blood. This condition was found by chance when I was 26 years old. I had to have open heart surgery to have a prosthetic Aortic Valve put in place and to have part of my Aorta grafted as it had an aneurysm due to the work load on my left ventricle. The aneurysm near bursting. I also have a PFO which stands for Patent Foramen Ovale. It is hole between my upper atrium that puts me at a slightly higher risk for a stroke. This condition causes me to have debilitating migraines and hormones in pregnancy only exacerbates my headaches. I still do have a small section in my Ascending Aorta that has an aneurysm, but that is being watched every 6 months via echocardiogram with my Cardiologist. I will face another heart surgery when the prosthesis starts to wear. The extra load on the heart during pregnancy puts me at a higher risk. I also have a blood clotting disorder, which means during pregnancy I have to take daily injections of blood thinners. Last but certainly not least, I also have a condition where my cervix is incompetent. Each of these reasons alone puts my pregnancy into a high risk category. I must be followed by a high risk OB/GYN, a Cardiologist and a Hematologist through out each pregnancy. We have been at this "building our family" thing for quite some time. For 2 years after my heart surgery we had to hold off becoming pregnant so I could heal properly. Looking back, the first month we decided to try in 2008, we conceived but that resulted in a 6 week miscarriage. The next month we were cleared to try again. We conceived right away and we were elated! At the 20 week scan we found out we were expecting a baby girl! We named her Jena Rose. Jena Rose was healthy and growing on track. Her organs were all visible and perfect on the scan. We did however find out that there was an issue with my cervix. A condition at that time that I had no idea would be such a problem. This condition is called Incompetent Cervix. I learned that my cervix was looking very weak and shortening from the weight of the baby and that I may require a cervical cerclage which is a surgical procedure to basically tie the cervix together to prevent the cervix from opening and causing preterm rupture of the membranes. Our high risk OB. assured us that we could just watch the cervical length via ultrasound and we could consider the procedure if my cervix got to a certain short length of 2.0 cm. At that point we were sitting at 2.4cm. I had a horrible feeling. In the late second trimester I was feeling ill and I had this feeling that something terrible was going to happen. I begged my high risk OB to consider the cerclage. He refused, saying we would still continue to watch it. Needless, to say I started to have painless dilation of the cervix and my membranes prematurely ruptured. For weeks, I stayed on hospital bed rest taking multiple medications to try to keep infection from getting to Jena as her membranes were ruptured. I went into full blown labor on March 1, 2008. There was very little amniotic fluid left and each time Jena would try to make more, it would only leak out as the membranes had a large tear due to the cervix giving way. Labor happened so fast and because of my heart condition, I require a c-section. We never made it to the operating room. The contractions were so hard and fast. It was the most painful thing I have ever felt. All of a sudden the contractions stopped. We received horrible news after the resident OB checked on Jena via a portable ultrasound machine. Jena Rose had pressed against the umbilical cord and had cut off her life line. I had to deliver her still. Brian and I thought we would never recover from that loss...I am so sad for my Brian. The very first baby he had ever held was dead...His own dead baby. We thought that it could not possibly get any worse than this. We had nothing but loss and heartache when it came to pregnancy and childbirth. The high risk OB to this day must feel some guilt as it was up to him to decide to place the cerclage (stitch) and he didn't. A part of me will never forgive him for that. I feel that his lax attitude towards my ever shrinking cervix is what caused my membranes to prematurely rupture as he did nothing to remedy the situation. He didn't place the cerclage. I think about how my fate my entire family dynamic would be different today had that cerclage have been placed...Today an urn holds the remains of my daughters...sisters, Jena Rose and Eva Joy...I pray that they are together. I ache for each of them and when they passed away, two pieces of my heart became hollow. A miscarriage to be followed by a stillbirth is definitely no cake walk. It was at that point that family and friends would make comments to me about just giving up and that having a healthy pregnancy and delivering a baby was just not in the cards for me. It took many months of working through all of that. In time, I was still destined to have a baby...I knew my miracle baby was just waiting to be ours... Six months later, we found out that we were pregnant with my son, Blake. He is now my only living child. My pregnancy with him as you can imagine was anxiety ridden as with every move I feared I would miscarry or that my membranes would rupture. Due to my conditions during pregnancy it is imperative that I seek care from a high risk OB. I was still angry with my previous OB. I did not want to go back to the same practice. I feared that even though my incompetent cervix was now diagnosed that going back to the same high risk OB may lead to the do nothing and watch attitude and that it would put me in the same situation as before. There is another local hospital in the area that provides high risk OB care, but because of my history they strongly suggested that I stay with the same practice as they would be able to assess me the best as they are aware of my needs during pregnancy. I had no choice but to return to the hospital where the last time I was there, I handed my cold dead baby to the nurse to be taken to the morgue. It was so unbelievable hard to walk back into those doors. The smell of the OB office made my stomach turn. Seeing the same nurses and faces made it even harder. Seeing the high risk OB made me cry. I was in a situation where I had to press on and put all of my energy into this new pregnancy. When I met with the high risk OB, the first thing I said to him was, " I need a prophylactic cerclage this time". He agreed and said nothing else. I went on to have a somewhat normal pregnancy with Blake. Besides my nerves and anxiety attacks every 5 minutes, we made it to 28 weeks where I needed to stay on bed rest with preterm labor medications...On a very hot day in July at 34 weeks and 5 days, Blake decided that he was coming! Brian was about to take me to an OB visit when I bent over to grab my shirt and a large amount of blood poured out of me. My cerclage was ripping and Blake's head was able to be felt. Upon arriving at the hospital, I was given morphine for the pain and my cerclage was removed. Contractions started right away. Brian and I stayed overnight and the next day Blake Matthew was born via c-section. Being wheeled back to the operating room, I was terrified. I was minutes away from meeting the baby we have for so long been waiting for. I was trembling. The spinal was administered and my Brian was able to come in. Minutes later my little baby boy arrived. On July 23, 2009, at 35 weeks, Blake weighed in at 6 pounds! Brian sobbed and I cried out in relief. Blake was showing signs of breathing troubles so after a few moments they whisked him off to the NICU. Recovery was hard. I vomited from the time the c-section was finished until late hours into the night. I was so sad that my baby was in NICU. I never could breast feed him because he was having his breathing supported by a CPaP machine. I was scared for him. Little did I know then, but that 10 day NICU stay was a breeze compared to what I would face with my Eva Joy a year and a half later... Blake came home 10 days later and we loved our roles as parents. We loved celebrating every milestone, talking, walking, eating, growing...I love being a Mommy. I find it to be so rewarding! The best job ever! Finally, I had my baby! We were finally a little family...a blessing that I have NEVER taken for granted. 15 months after Blake's birth our pregnancy with Eva Joy started. It has taken so much grieving and bending and reshaping to come out of that and we are not done "re-learning how to "re-live" again. Eva Joy's funeral was so hard but yet so beautiful all at once. So many family and friends from afar came to show their support for our family. So many other Parents from the heart defect community. So much love and hugs and so many tears shed. It had me thinking of other cultures and how no matter what age at the time of death or how the person dies, that in some countries the end of life "here" is truly a celebration. I remember saying to Brian that if I money was no option I would travel the world and study all of the ways that people mourn or grieve or "celebrate" a loved ones death. I NEVER wanted any of this to pan out the way it has. If it were my plan, we would have our happy family of 4. Is that so much to ask? So many women have multiple children. So many woman never know the heartache of loss or the trials of a high risk pregnancy. Every day teen Mother's have babies when they are not ready the way they need to be. Somewhere, right now as I type this, a Mother or Father is abusing their children or neglecting them.Why? Bring them to me. I will love them and nurture them. I need to put it out there that I don't take any of what I have for granted. I do not have children just to have them. I fully realize my blessings with Blake. I am so rich in love because of him. I have several friends who simply cannot conceive on their own. I even have some friends who have been trying for many many years. I cry for them too. I do not understand the injustice of it all. Why so much heartache? Where is the HOPE? Where is my HOPE? I am writing this blog to not focus on the past. I have lived it, I have learned from it, My family and I are changed people BECAUSE of it. Fast forward to today...This blog is meant to share in my search for HOPE. Brian and I have talked about that 4th family member and if there will ever be one living with us on Earth. So far the trhree of us seems to be the common denominator...I would love to have my girls here, I ache for them, but I can't have them here. I can only think of the times I had with them during pregnancy and the short life of Eva Joy .New adventures can be frightening at first, but it is my hope that my family and friends or who ever decides to follow my blog will buckle up and ride along in my journey for HOPE...Hope after Heartache. I plan to write a little every week. After all, I have a 2 1/2 year old, a house and a husband to take care of...I hope that this blog provide me an outlet and to also share our future plans on our decisions to continue this thing we call "building our family"... WILL WE TRY FOR ANOTHER BABY? My next blog, I will be sharing information from my visit with my Cardiothoracic surgeon. I see him on 1/27... I will be discussing with him his feelings of me carrying another child. Can my body handle it?Is another heart surgery in my near future? What are the options? Am I even ready mentally to consider a new pregnancy?Time will tell.