August 28th 2009…The day my life changed forever.
To begin we really need to go back to the beginning. Kenny and I got married in June of 2008, about a month later he got deployed to Iraq, and a month after that we found out we were pregnant. It was such a scary and exciting time. We had wanted to wait until after his deployment to start our family so that we could be experience everything together. But, that wasn’t what the Lord had in mind for us! On March 8th I had a routine ultrasound in the morning and had taken the rest of the day off to get some things done around the house. At my ultrasound they said everything looked good and let me leave. I met up with my friend Mara for lunch and while we were sitting in the restaurant I got a call from my doctor saying that I needed to get to the hospital as soon as possible because the fluid around the baby was dangerously low. Of course I panicked, but, we left and went to the hospital where they hooked me up to monitors, IV’s, and started ultrasound monitoring every hour on the hour for the next 2 days. Things still hadn’t changed much so on March 10th at 9:00 PM they decided to take him early, but because he was breach, I would have to have an emergency c-section. My Grandma had come to visit me that evening (THANKFULLY!) so she stayed with me. At this point, Kenny was still in Iraq and had been on missions all week so he didn’t even know I was in the hospital. I was expecting him to call anytime but didn’t know if he would be able to, so we sent a Red Cross message letting him know I was heading in for surgery. At 10:10 PM on March 10th 2009, I became a mom for the first time to the most handsome little man I had ever seen! Brayden Kenneth Baum appeared happy and healthy. I was in love immediately. The next morning the doctors made their rounds. My OB doctor did her checks on Brayden and heard a slight murmur so they took him in for testing. He was gone for hours. But finally they brought him back and laid him back in my arms…they didn’t say a word. The next person that walked in to the room was a woman named Dr. Burg, she explained she was the cardiologist who had done Braydens testing and was there to talk about when he would have his surgery. SURGERY!? What surgery?! What was she talking about? I was in shock I couldn’t believe what she was telling me. During their testing they found 2 very severe congenital heart defects (Atrioventricular Septal Defect and an AV Canal) and they would need to do surgery within the first couple month of his life. I was devastated. While she was still in the room, my cell phone rang, it was Kenny. Now the devastation hit even harder….I not only got to tell Kenny that his handsome son had been born, but also that he was not born healthy and would be facing surgery. How was I going to do this? I didn’t have time to even prepare I had to answer or I may not get another chance. That was the hardest conversation I have ever had to have.
We went home a couple of days later. But it was short lived.
At his 1 week follow up appointment, they checked him out and again said everything looked good. We were sent home. That night he was not himself, he wouldn’t eat, he screamed for hours and I couldn’t console him. Then a fever hit. He was sweating profusely but was also freezing cold to the touch. I called the doctor, they told me get him to the hospital immediately and they were calling ahead to have a cardiologist ready. We got there and they were able to get him stabilized but he was in heart failure. That was the start of our almost 6 month hospital stay.
At 3 weeks old he had his first open heart surgery to repair his valves and his septum. Followed, 2 days later, by a pacemaker surgery where they put in a permanent pacemaker. Things got a little better from there, we were in the ICU for about a week and a half, but he was getting better. We were eventually down graded to intermediate care and then sent home for the 2nd time. It was perfect timing though as Kenny was set to be home on leave just a few days later.
The first time Kenny met our son was in the airport, he was already a month and a half, and had already had 2 major surgeries.
We were home that round for about 2 weeks. Again the fever returned and we rushed to the hospital. He was in heart failure again and went in for his 3rd open heart. After this surgery they kept a really close eye on him and monitored his heart valve regularly. One night he started seizing and had a stroke, his heart valve had clotted again suddenly and had thrown clots into his little brain. They couldn’t figure out what was causing his valve to clot and fail. They decide to do more testing and learned that he also had a blood clotting disorder, called Factor IV Liden, which was causing his valve to clot shut and stop working. This started another long process of trying to get everything under control. At this point Kenny was supposed to be on his way back to Iraq to finish out his year long deployment. We contacted his supervisors and explained the circumstances and agreed to send him back immediately if anything was to change. He got on the plane and headed back to Iraq. But would return again a couple of weeks later.
Through everything our little B man was such a trooper. He was silly and smiley all the time. It truly amazes me how resilient babies are. That little guy brought a smile to so many peoples faces. The nurses and doctors loved him. We had a steady stream of family and friends in his room daily. I really don’t think he could have been loved any more!
Things again took a turn for the worse. We were told the doctors couldn’t do any more for him and at this point we needed to prepare for a good bye. We had our family, friends, and Pastor at the hospital with us. We prayed over him and began our final days with him. On his last night with him the nurses wheeled in an adult size bed that allowed us to sleep with him. Around 5:00 AM on October 28th 2009, we held our son and again prayed over him. I will never forget the hand of his nurse Katie, grabbing mine as she joined us in prayer. He passed away that morning and it changed our lives forever. The next couple of days and weeks, passed by in a blur. A lot is still fuzzy to this day. Every year on this day it is hard. It’s hard because no one else really sees the hurt any more. It’s hard because even though it has been 9 years now we still miss him so much. It’s hard because my children have never met their older brother, but love him like they had. It’s heart breaking to know that the only picture I will ever have of all 3 of my children together is of them at his grave site.
Through all of this though, I can’t be mad. I have had a lot of people question me and how I can not be angry with God. All I can say is I know He has a plan for all of this. I know for a fact that Brayden made a huge impact in his short little life. About a month or two after Brayden passed we met with one of his doctors, Dr. Carl Garabedian, and he told us that because of Brayden, every baby that is born in our local hospital that has a heart condition is automatically tested for blood clotting disorders. That way they can know in advance what they need to prepare for, and may help save other babies lives. I also know he changed me. I know he brought me closer to the Lord and made me appreciate the little things in life. He also made me realize the importance of being available for my babies and not taking it for granted. I also know that God can use me because of our experiences. There are other families that are struggling out there and I know I can be there to help them through it. I can help them see that there are others who have walked in their shoes and even though it was hard have survived. The Lord has promised us that He will never leave us nor forsake us. Even when we feel like the world is crumbling around us, or like no one understands what we are going through, He does. He knows our inner most feelings and thoughts. He feels our pain and loves us more than we will ever know. We can turn to him whenever we are feeling hopeless.
I want to thank you for reading through this, I know it is quite long. But if you have dealt with similar circumstances or know someone who has or is. I would love to talk with you. Even though today is a hard day I will make the best of it and pray you do as well. Have a blessed day!