Update - September 27

The past three days - wow. So many wonderful things have happened.

We brought her home! To our house! Where we live! When we were leaving the NICU, the mix of emotions was overwhelming. I wanted to cry from joy, dance with excitement and puke from nerves all at the same time. I hugged our doctor under strict instructions to tell NO ONE that he hugged me. Our friend Sarina, who is a NICU nurse in Danbury, came to ride home with us, mostly for my peace of mind. The ride home was uneventful. Micah carried her into our home in her little car-seat and we just sat staring at her for the longest time, unable to believe she was actually home with us. We brought her into her room and snuggled her down into her crib. I sat in the rocker and just watched her breathe. It’s funny, because I know most new moms do that but it’s something we actually have to worry about. Maybe not that funny?

Because our care manager at the hospital is awesome, she found a nursing group who were able to start working with us our first night home with Lydia. The nurse gets here at 11pm and leaves at 7am. What a blessing! If we didn’t have her, Micah and I would be taking turns sleeping.

Our first night home was uneventful. Lydia slept peacefully and Micah and I were up off and on all through the night, straining to hear any sound of alarms. She did wonderfully, though, and woke up with wide eyes around seven.

Yesterday was insanity. We had people in and out all day to help us prepare for the baptism. Oh, people. The baptism. It was wonderful. We had immediate family, a very few friends and staff and spouses from church. We wish everyone could have been here to celebrate with us. We wanted her to be baptized as soon as possible, not because we believe her salvation lies in baptism, but because we wanted everyone to know that she is God’s child and deeply loved by Him. As we have so many times before, we wanted to commit her life to Him and celebrate her life.

We started by singing “Be Thou My Vision.” My dad read Zephaniah 3:17 - “The LORD your God is with you, He is mighty to save. He will take great delight in you, He will quiet you with his love, He will rejoice over you with singing.” Micah’s dad read Romans 8:37-39 - “No, in all these things we are more than conquerors through him who loved us. For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.” Our bishop Thad took our sweet baby, baptized her and anointed her in Jesus’ name. We all received communion and sang “Great is Thy Faithfulness.”

It was wonderful - everything we could have wanted it to be. The Holy Spirit was present with us and our time was blessed.

We passed another fairly uneventful night. She had one slight desat, down to the seventies, but she came back up quickly and showed no seizure activity. We don’t know if was seizure related, but that was the only problem. God was being merciful to me. I slept right through it. Micah had turned down the monitor, so I didn’t hear anything. Poor Micah, though, it woke him up and then he didn’t sleep the rest of the night, just waiting for something else bad to happen. Praise God, nothing did.

This morning, again, she woke up with bright eyes, ready for the day. We had a lot of visitors today, mostly siblings who live out of town. It was wonderful to be able to pass a quiet day at home WITH OUR BABY IN THE HOUSE and not at the hospital. She got plenty of good snuggle time with aunts and uncles.

I’m sitting here as I type this, watching her sound asleep in Micah’s arms. Sarina told us when we brought her home that she’d do so much better here. The change in her is substantial. She’s moving around so much and is awake a lot more. It’s easy to forget at times that there’s even anything wrong.

The duality of emotion is difficult to maneuver through. For every good moment we have, we both celebrate and realize it’s one less good moment we have. We’re trying so hard to live in the moment with her. As my sister-in-law said, just because you know the end of a story doesn’t mean you should not enjoy what happens in the middle.

Every, every moment is gift for which we are thankful, because we might have had none. I know this is long this time, but I haven’t even begun to say all of the things in our hearts - I don’t know if it can be put into words.

Not to be blasphemous, but I begin to understand that part of the Bible where it talks about Mary watching the shepherds coming to worship Jesus and “Mary treasured up all these things and pondered them in her heart.” Each moment, each time she looks at us, every time she grabs our fingers - we store them up and say a prayer thanking God for each one.