Lannah Lea Jones

Two weeks just wasn’t enough and even though you fought so hard for us and we fought hard to, God had his reasons- something I don’t understand but my heart has to trust the Lord. My heart aches daily, but we know your little heart just wasn’t able to keep up with your fighting spirit. Our Lannah was diagnosed at 20 weeks with unbalanced Atrioventricular septal defect. Our hearts broke, but we prayed and kept fighting for you, terminating a pregnancy just wasn’t an option for us. When you started to develop fluid in your little body inside me - I fought to seek out the best doctor I could to try to save you. I finally found Dr. Barker at Duke pediatric cardiology after learning of his amazing skills working with children that are born with this issues. He was amazing, he got us right in and fought for you right along our side. We had the whole department cheering for you. You weren’t even on earth yet and you were already so loved 🥰 After some weeks of staying in the hospital the fluid unfortunately increased and what we feared was the case… was happening. Your heart was failing you. I tried so many medications to try to help your heart through me- our goal was to keep you in as long as possible so maybe you would be able to tolerate surgery if we got you to 35 weeks. Unfortunately July 11 at a routine check in- your fluid had increased significantly and I was beginning to show “mirror images” and was swelling badly as well. Dr. Barker with tears in his eyes grabbed my hand and said we have done all we could do, it is time to get her out and see what can be done. I broke into tears, scared and worried. I wished I could have done more- I begged him to let me go up again in the medication but he said the dose would be too high an could cause distress to my heart. After thoughts and thoughts I decided to have a c-section (which I never had before) to try and make sure you got into the world safely yas possible with little stress to your heart. Daddy got to see you first and he was so in love. I could see how proud he was of you. My heart was full of joy. After days of going to the Duke NICU after delivering you 9 weeks early we had the best team trying all the things but you were too little for surgery. Onetime I counted 9 medications fighting to regulate your body as a breathing machine kept your lungs going. I had only been able to give you bear hugs (cupping my hand around your head and feet) and hike in the incubator. I had yet to hold you. I would come sit by you all day and then most of the evening when daddy got off work. I would pump you milk that they would let me put in your cheeks with a little syringe. I had never prayed so hard for a miracle. I just wanted to keep you on earth with us but we also wanted you to have a quality of life. As the days passed we entered day 11- you were declining, you had a blood clot in your leg, the medicine to strengthen your heart was at the highest dose and it wasn’t improving the function. The fluid was still backing up in your body because I had to accept you were in congestive heart failure. I didn’t want to see it, hear it or have anything to do with it. I watched them stick you for days but all your veins were blown, they could barely get anymore blood for you to keep the labs running to k ow what meds to give you. The doctor said the dreaded words - “we should think about comfort now” and I said while crying “I just wanted to hold my baby.” Soon after daddy arrived and we held you for the first time! I was so happy- you were so perfect, your nose, your big feet, I just adored you. We prayed that night for God to help us, we just couldn’t give up but we couldn’t stand watching day after day what you went though and no improvements. I remember that night us at the Ronald McDonald house crying together before bed begging God for guidance. The next morning we received news that your kidneys were failing- we knew God was wanting to take you home. So we made the hardest choice any parent has to make - to let you go, to show you love, comfort and peace before you left this earth. We had all of your siblings come be with you, we baptized you and they gave you a beautiful dress for your baptism. That day will forever be etched in my mind. As you left this earth your daddy and I held you, sang to you as we listened to you take your last breaths. We just held your body for hours, we bathed you and I remember the smell of your hair after washing you in that baby shampoo. I didn’t want to leave you. That walk out of the hospital was torment. How could I leave my baby there? How, I felt terrible. Lannah you are so loved and I will never let your name go unmentioned. You are a fighter, you are loved and you are our Lannah Banana always - Love you, mama and daddy