Guest Post: Finn is our Heart Warrior- By Amanda Monsen

“Hard times will always reveal true friends.” Sadie and I met under extremely stressful circumstances but I am glad I get to call her my friend. She gave me hope when I felt like I was drowning. Ollie had just had surgery and Finn was waiting for his first. Ollie was Finns first roommate. Sadie and David shared a pizza with me on a particularly hard and lonely night and I appreciated them thinking of me. They also went out of their way to come see Finn and me after his 2^nd open heart surgery. They are truly amazing friends that we will never forget.

Finn is our Heart Warrior. He was born with 2 heart defects. Transposition of the Great Arteries, which means his Aorta and Pulmonary arteries are switched. So basically his heart was on 2 different circuits instead of one like a normal heart. He also has a small left ventricle. He’s not a full hypo plastic but it’s not big enough to do what it is meant to do. We were not pre diagnosed so when Finn was born it was a complete shock to us. We were not prepared at all for what was coming our way.

Finn was born by C- section at full term on October 15, 2013. We had no indication anything was wrong with him until a few hours after he was born. The nurse decided to check oxygen saturations because his color was a little bit off. His sats were low and he was not responding to oxygen so they ended up needing to intubate him and life flight him to Primary Childrens Hospital. They told us more than likely there was something wrong with his heart and they would have more information for us in the morning. I was devastated. I felt helpless. I remember thinking none of this made any sense to me. All I could do was cry. I sat in my recovery room alone, while my husband Jared was at the hospital with Finn and my family was trying to take care of my other 2 boys, and I just cried.

    Once I was able to leave the hospital things got harder. Jared and I were juggling between being with Finn at the hospital in the CICU and trying to still take care of our two other sons at home, Cam, 6, and Jack, 3. We didn’t have many answers as far as treatment or surgery for Finn. The Drs rarely, if ever, see these two defects together so they had no idea how to proceed. After a few days in the CICU they finally let me hold him for only the second time in his life. He looked perfect. I remember thinking he looked just fine and they just needed to let us go home! We had been bombarded with talk of surgeries, a chance he wouldn’t survive, how his life and ours was going to be different forever that I would outlive my son and eventually he would need a heart transplant. There were tons of medical terminology, Drs, tests, meds, x-rays, and echos. We were mentally and physically exhausted.  I just wanted to take my baby home and be all together as a family! On a particularly hard day I was sitting in Finns room talking to one of his nurses about how hard this was and that I didn’t think I could do this. I will always remember what she told me. She said, “If you had the chance to have Finn with his heart problem or not at all, what would you choose?” Of course I would choose Finn, and everything that comes with him.

October 23^rd was Finns first open heart surgery.  He was 9 days old. We did a lot of praying up to this point and were able to give him a blessing.  The Drs didn’t even really know exactly what they were doing until that morning. We wheeled him to surgery and then we were told to wait. Waiting for your son to come out of heart surgery is the worst! Surgery lasted just under 4 hrs. We were told everything went well. They put in a shunt to help his blood mix and a band around his Pulmonary artery to try to make the left ventricle grow. This was a temporary fix. It was hard to see him after surgery. The amount of tubes, wires and machines that were there to keep him alive was overwhelming. But at least that part was behind us. I felt like I could breathe a tiny bit better.

Two days after surgery I was at home with my boys while Jared was on his way to see Finn. I got a call from one of the CICU Drs. He told me that Finns blood iron levels had dropped significantly and they were going to do a scan to check for a brain bleed.  He was also struggling to breathe and they needed to give him a blood transfusion.  I panicked. I dropped my boys off and rushed to meet Jared at the hospital. When we walked into the CICU I could see tons of people crowded around his room. The nurse was rushing around and all the Drs were trying to figure out what was going on. When I looked at him he looked so scary. He was purple and breathing so fast. You could tell he was struggling.  The Drs said he was going downhill fast and they didn’t know why. They needed to re intubate him to help him breathe. They closed all the curtains and everyone was rushing around. They had to give him a medicine that paralyses them so they can intubate. I hate that drug. It was one of the hardest things I have ever seen. I had to walk out. I didn’t want to see my baby die. I honestly thought we were going to lose him. I stood in the hall and cried. All I could hear were machines beeping faster than they should and people talking fast and moving around. What would I do if we lost him? How would I tell his brothers what happened? I wasn’t strong enough for this. Once they got him stable I went back into his room. He looked a little better and slowly continued to improve. We were relieved!  Eventually they told us he had culture negative sepsis. Um, kinda scary!

Finn made progress here and there but it was slow. Finn dealt with stomach issues and throwing up a lot. At one point he had two tubes in each tiny nostril, two for his stomach issues and a nose cannula for his oxygen. He ended up getting an intestinal infection that kept us there for an extra 2 ½ weeks.  Jared and I were trying to hold it together for the older boys and tried to do some fun things with them when we could so they didn’t feel forgotten.  We took 24 hr shifts at the hospital with Finn and saw each other a total of maybe 10-30 mins a day the last 2 ½ weeks we were at the hospital. It was hard. I remember I had all sorts of emotions during this time. I was angry, sad, scared, hopeful, and then all the emotions would start over again. Life would never be the same and that was devastating to me.

We were finally able to bring Finn home a few days before Thanksgiving! We had a lot to be grateful for that year.  Despite the extra machines and the feeding tube we brought home with us, we still had our beautiful baby Finn. And that’s all I wanted at that moment. He was such a good baby all the time! No exaggeration. He was always so happy and content and we considered that a huge blessing.

We were in and out of the hospital a few times before his next major surgery. Trying new meds to help his heart pump more efficiently, the cath lab to fix a kink in his shunt, on and off oxygen, checking sats all the time. We were in such an unstable place and I was nervous and uneasy about him almost all the time. I was trying to enjoy him and our new “normal” but I always had the next surgery looming in the back of my head.  We had good days and bad days. Days where I was really hopeful and I thought I could do this and days where I was angry and questioned why this happened to my family and if I was strong enough to do this. I had to keep telling myself I could do hard things and that everything was as it should be. Everything would work out how it was supposed to and we would be ok, no matter what the outcome would be.

Because of Finns two defects, there were two very different surgeries we had to think about with two very different outcomes. There was one that was a way better option with a way better prognosis. We prayed every day that we would receive a miracle and Finn would be able to have the “better” surgery. We learned that our Heavenly Father’s plan for us and for Finn is far greater than what we think is best. He would have to have the other, not so great surgery. I was devastated. But soon learned that maybe this was the “better” surgery and I just couldn’t see that before. We finally had a date for Finns 2^nd open heart surgery. This would be the big one. The one that would hopefully put us in a more stable place and give us decades before another surgery was necessary. May 1^st, 2014. In a way I looked forward to that day because that meant it would be behind us. We got up early that day and went to the hospital. Got all checked in and was ready to go. I remember I wasn’t nervous like I thought I would be. I was abnormally calm. That was a blessing. We walked down the dreaded hall to surgery. Once we got to the double doors we kissed him goodbye, wished him luck and handed him over. We watched as the Anesthesiologist walked down the hall with our baby, Finn watching us as they walked away and then the doors closed.  My heart felt broken. Jared and I cried and held on to each other tight as we walked to the waiting room to take our seat and wait. We were able to get updates every couple hrs.  I swear it felt like we were there forever. Finally, 8+ hours later he was done and alive! The surgeon came in and said everything went well. We could see him soon! Finally when we were able to go see him we walked into his room in the CICU and the first thing we noticed was not the tubes and wires and IV’s, it was his color! Finn was PINK! He was finally the right color.

After surgery Jared and I took 24 hour shifts like last time but it seemed much easier this time. Finn was doing remarkably well! We were told we would probably be in the CICU for 3 or so days and he was out in less than 2! The Drs were amazed at how well he was doing! After a few days, he was smiling again, and wanting to play. We had a long recovery road ahead of us but he was off to a great start. The Drs walked in for rounds one morning and one of them looked at us and said, “Whatever you did worked. He’s doing amazing.” We did a lot of praying, a lot of fasting and had a lot of family and friends and people we didn’t even know supporting us. We have received many miracles. We were supposed to be in the hospital for 2 -3 weeks and were released after only 6 days! Recovery at home was hard and long but for the most part Finn did well.

We are now almost 3 months post op and doing fantastic! Finn is thriving and growing and you would never know by looking at him that he has ever had a problem. He has defied the odds and amazed the Drs. Our heart journey is not over and Finn will always have to be monitored by his cardiologist but the hope is that his heart will be able to function this way for decades before a heart transplant is necessary. Finn is a fiercely determined little boy and we know he will do amazing things. We are enjoying every minute we have with our sweet baby Finn because you never know when things will change. We feel truly blessed beyond measure to have him in our family. He has taught us to have faith. And he has taught us that we can do hard things.