My dearest Abigail,
I have no words, yet at the same time I have so many. I want to start by saying just how much daddy and I love you. I didn't know love existed in that degree until I met you. The moment I heard your first cry, I bursted into tears of my own. Not because I was sad, but because you were finally here. I already loved you beyond words.
When they took you to the nicu I wasn't scared because I knew you were okay, and that we would be reunited shortly. Once we got to Children's hospital, and they told us that you do in fact need surgery immediately, I was terrified; my heart sunk for you. A week later was your surgery date, and that was one of the hardest things I've ever dealt with. We walked you to the operating room, but I could barely see through the river of tears pouring from my eyes.
When your surgery took twice as long as expected, we were so worried. But you proved all the doctors wrong, and came out without life support. It was then that you became my hero. A week later when the surgeon attempted to close your chest, I thought nothing could possibly go wrong; he assured me it was a routine procedure and rarely does anything happen. I got a phone call saying you were being put on ECMO (aka life support). I felt my stomach twist into a million pretzels. I had met another mom who told me her terrifying account of ECMO, and that was the last thing I wanted for you.
Once again, you proved everyone wrong and ECMO was turned off after just 2 days. You began moving forward in recovery for the second time. That week was spent getting rid of all your extra fluids (which was pushed too quickly, and you ended up needing fluids again in addition to a blood transfusion).
The following Monday was chest closure attempt #2. It didn't take long, and when the surgeon came and told me all was well, I just praised God. I came back to see you and was ecstatic that you longer had an open chest. Then your numbers started creeping down. Your nurse called the doctor just to make him aware, and when he came in he told us he thought your B/T shunt had clotted. (This means your body was no longer receiving bloodflow). Within minutes, there were probably 15 people in your room; it was amazing. Everyone remained so calm and focused. They cared about nothing more in that moment that saving you, and that they did. After many doses of heparin (a strong blood thinner) and epi (to jump start your heart), you stabilized enough to be put on ECMO again. You were then taken to the Cath lab and a stent was placed in your shunt to keep it open.
ECMO was turned off the next morning. You beat the odds again, baby girl. A week later we began teaching you how to eat. At first you were confused, but then you picked it up so quickly! Not long after that we left the icu and graduated to "the floor". I was so proud of you. I couldn't believe all you had survived at only a month old; you were truly a miracle. Once out of the icu, you got sick again. You were being weaned from morphine and the formula you were on upset your tummy to a degree I don't understand. All I knew was my baby hurt and I didn't know how to fix it.
Over the next 2 weeks, you got well again. Well enough to go home! I had never been happier, we finally got to bring our baby home! The first night was rough, because I felt overwhelmed by all that went into caring for you. But after a late night snuggle and a big toothless grin, I calmed down and realized I can do this. God wouldn't have given you to us if we couldn't handle it. So then I was more than happy to get up every hour or 2 because you were crying, needed meds, needed a diaper change, or whatever it may be.
Just a few days later, you were throwing up so much that your cardiologist suggested we go back to the hospital. There, we spent 3 more nights before returning home. They never really figured out what was wrong, but you quit throwing up as much. Once home, I felt like the happiest person alive. This felt more victorious than coming home the first time. Oh those last few days were amazing. I finally got a routine down, and I was getting a good grip on caring for you. Not to mention all the uninterrupted cuddles and ear-to-ear grins. I fell more in love with you every day. I couldn't believe how miraculous you were, and how you were all ours! We felt so proud to be your parents.
Friday morning was the worst day of our lives (right next to losing Joshua). I woke up because you were fussing, so I picked you up to comfort you. In my arms, you stopped crying. I noticed your eyes seemed to be fixated on something, so I tried to break that focus and get your attention. It didn't work. So I laid you down, hoping I could change you and cuddle you to sleep. Then you were breathing funny; it just didn't seem right. I unzipped your sleeper to look for signs of respiratory distress, and sure enough I saw your ribs retracting. I woke daddy up, and by the time he came to you, you weren't breathing anymore. Daddy responded so quickly. He immediately began CPR and I called 911.
The paramedics showed up fairly quickly. Unfortunately, they aren't trained to handle unique cardiac cases like you. They treated you like a "normal" baby, and thought CPR would help. We tried to tell them you need to get to the hospital immediately, but I think they just didn't understand the magnitude of the situation. You were gone before we even left our room, but they kept trying. All the way to Children's. Once we got there, they intubated you and continued CPR. It had been over 2 hours since you last took a breath of your own and your heart beat without assistance. I knew it was over. I knew before we got to the hospital that we had already lost you. The confirmation from the doctor made it real though.
I was, and still am, mad that your heart disease won in the end. We were so sure that you were meant to be a fighter. You beat so many odds and survived when you (medically speaking) shouldn't have. I thought in 20 years you would be able to tell people that you're alive by the grace of God, and that you beat this nasty disease. instead, you're another sad statistic in the medical world. But you were so wonderful that God wanted you back. I have to remind myself every time I'm mad that you truly are in a better place.
I think of your life and I just see so much suffering. You endured more than any human I know, and you were only 2 months old. But you knew no different, and despite all that you went through, you were a happy baby. You only cried if your tummy hurt, or you just wanted a snuggle. You always smiled, and just before you left us, you were beginning the efforts of giggling. I am so impressed with your strength and power to overcome all of this. In the end, you didn't make it, but you will always be my hero.
I try to remember you happy and alive, but the last time I saw you, you were cold and lifeless. I can't unsee that, and it haunts me. I look at pictures to bring my memory back because I want to remember you smiling, not sleeping with angels. You brought so much joy to not only our lives, but the lives of those around us. You had so many people praying for you little girl. People who had never met you, and many that had never met us. It's amazing how people come together for each other in times of desperation and despair.
I will never love anyone the way I love you. And I can never admire anymore more than I admire your strength and beauty. You taught me what love is, and what life means. You showed us what's truly important and for that I am so thankful. I love you beyond any words in my vocabulary, and I think you know that. You always knew how loved you were, and still are.
I hope you're happy with your big brother and gramma Dorie. I miss you so much. Now I have to figure out how to go back to living without you.. I'm not sure I can comprehend that, but I guess it will come with time. Watch over us baby girl, and know that you are so loved. Rest in peace, Abigail Rose. I love you
Love, mommy
