Monday, April 30, 2012

Meet Eva Joy.

Time to do another angel story. I would like for you to meet Eva Joy. Eva was a heart baby just like Noah. Eva also had a cleft like Noah. So I feel a connection with Eva's mom, since our babies had so much in common.
Look how adorable Eva is. And look at those eyes. Just gorgeous.

If you remember the last angel baby I featured, which was Jena. Here's her story if you don't remember. But this is Jena's younger sister. So heart heartbreaking that this family had to loose two kids.


When Blake was 15 months old and after 9 months of trying for another baby, we became pregnant again! As with my pregnancy with Blake, my OB placed another cervical stitch in my cervix to prevent my incompetent cervix from opening prematurely again. It was at the big 20 week ultrasound that we once again were told horrible news about our baby! We were told that we were having a girl which we were thrilled about. We thought, finally we could have a baby girl in our home and not in Heaven. My cervix was nice and closed and long so premature labor would not be a problem…It was worse! Our baby girl on ultrasound looked as if she had a severe heart anomaly!  The left side of her heart was severely undersized. We were told to get genetic testing done and to seek out further tests to check on our girl’s heart. We went to the University of Michigan, which is supposed to be a center of excellence for Pediatric Cardiology. We were crushed! It was confirmed that out daughter had what is one of the most complex heart defects called, Hypoplastic Left Heart Syndrome. It was also confirmed that our daughter had a very rare genetic deletion on her 4th chromosome. There was little information out there on this rare deletion except an array of heart defects and clefting in the lip and palate. Our girl, who we decided we would name Eva Joy, had both…a severe cleft lip/palate and a very severe heart defect. We were given the option to terminate or to continue with the pregnancy. It was something that was so hard for us…

We called on Pastor Greg to sit with us and to pray. It was an easy decision for us to continue with the pregnancy as there are many babies out in the world with Hypoplastic Left Heart Syndrome who are alive and thriving. We knew it would be a tough road for our baby girl. She was to face three open heart surgeries in her first two years for her heart alone. She would also face the cleft lip/palate surgeries as well.

            At 31 weeks into the pregnancy, I went into preterm labor. I was put on hospital bed rest at my local hospital and was to be transported to the University of Michigan at 36 weeks to deliver her there so she can be ready for her first open heart surgery. After being away from my Brian and Blake for over a month in the hospital, the day arrived to be transported to University of Michigan to have a Cesarean Section to deliver our Eva Joy. Brian and I were so nervous, but we were ready to do whatever it took to get our baby girl safe and healthy. We knew it was going to be a fight for all of us…we were ready! On May 17, 2011 our Eva Joy was born weighing in at 5 pounds 3 ounces. For a heart baby she gave a good cry when they lifted her out of me! She was beautiful! She had the biggest beautiful blue eyes I have EVER seen. A true gift!

            On Eva’s 3rd day of life she underwent her first open heart surgery. She made it through just fine! In fact, Eva’s only issue was that feeding difficulties and she was very slow to grow. For four weeks Brian Blake and I stayed at the local Ronald Mc Donald House because our home was over an hour away. I was pretty much healed from my C section and Brian had to go back to work to continue to support our family. It was hard to be split up, but it needed to be done. Brian stayed with Eva all week and went to and from work from there. I stayed with Blake all week but on the weekends I was with our Eva. It was so hard to have a split family but we were starting to get used to it. We were told that Eva needed to have a procedure done in the Cath lab before she could come home. They wanted to check a few things with the catheter and that it was a simple procedure. I declined the procedure for Eva. I felt it was useless to go in and put her under anesthesia and “poke” around just to “check on things”. I had this bad feeling! Again, my motherly instincts kicked in and said,  “no, don’t do it”…It was Thursday, July 28th, 2011. I told Eva’s Cardiologist that I refuse the procedure and that I was going to drive an hour to go home to be with my Blake and Brian for the day. Eva was stable and all was well.

            After an hour drive home, I thought about the hard fight that Eva had already put up in her short life and about how much harder she would have to continue to fight once we got her home. She had been in the hospital almost 100 days and we were ready to bring her home! We were ready to continue to do whatever it took to get Eva healthy and well. Once I got home, Brian and I got a call from Eva’s Cardiologist saying that they still wanted to go into the Cath lab to check on some pressure in her stent that was placed in her heart.

They said the chances of anything significantly wrong happening was very low. We were told; just to stay home and that there was no need to come back to the hospital and that they would take her down to the Cath lab for the procedure. I told Brian that I didn’t have a good feeling and that she was doing so well that we should just let it be, however Brian and I had faith in them that they would help Eva to get home soon and that they just needed to do this one last procedure. Brian gave consent over the phone for the procedure. I still felt sick about it. I told Brian that we needed to go to the hospital to be there for her when she comes out of the procedure. The entire time I had that nagging awful feeling that something wasn’t right. When we got to the hospital, Eva was already in the Cath lab, so I didn’t get the chance to kiss her or hold her. This saddened me. An hour into the procedure Eva went into Cardiac Arrest on the Cath lab table and they couldn’t bring her back! I fell to my knees when I saw them pounding on her little lifeless chest. I started to sob and scream, “Eva come back”…She was gone. I held her two month old blue body in my arms and I was broken. I was angry at the Cardiology team; I felt like they talked us into this “unnecessary” procedure, I was mad at the world. I was so angry at God for allowing another one of my babies to die especially after how hard and long we all fought for Eva. I felt like dying myself. I didn’t care if I lived any longer.

            Again, we had to say good-bye to another one of our babies. As I write this letter, it is, April 2012…  almost 10 months since our Eva Joy died and I am still angry with God. I am grieving hard and will be for a long time. Planning her funeral was one of the hardest things I have ever had to do in my life. Her Nursery and clothing was taken down and packed away…Our hearts are still broken and we are still so lost. My Brian and I have yet more questions for God…Why did you allow this? Why did you allow us to get to know and love our baby for two months and then allow her to die? What justifies a baby to die before her parents? What justifies a family to lose TWO babies? We hope one day we will see our baby girls again. We beg for signs that they are with us in some form. I know I wonder how Heaven is and some days I wonder if there really IS a Heaven. So many questions…So much pain. Our 2 year old Blake keeps us going. There are still so many gloomy tearful days. We grasp at the notion that we will see them again one day face to face…We try not to lose faith…That is one thing we have learned in all of this and that is… walking by faith and not sight is one of the hardest things to do as a Christians… We continue to live and trust and to have faith…without faith what else have we got?

            If you are reading this because you have recently lost a baby through miscarriage, stillbirth or infant death please know that you are NOT alone…This an awful pain, but there are others who belong to this horrible club…God Bless you and Take Care



Sarah Barnfield said...

Eva Joy is stunning! I love her beautiful, soulful blue eyes. What a treasure. Hugs to Momma as she celebrates her great love for those sweet girls. Thank you for sharing her life with all of us.

Kim said...

So beautiful! Such a heartbreaking loss. Thank you for sharing another angel with us, Bettina! <3 u.