"Praise him—he is your God, and you have seen with your own eyes the great and astounding things that he has done for you." Deuteronomy 10:21
How do you unpack a trauma and a miracle into a white box on a blog page? How do you express all the things that go through your head when a doctor calls for you less than 12 hours after major surgery and the premature birth of your baby to say she's dying? I can only share what I feel God has called me to share. The rest will come out over time or be kept safely in my heart until I see the face of Jesus. In many ways this isn't just my story. It's the story of all of you who prayed for us, for your friends and theirs. It's the story of thousands of people who cared about my tiny baby and who prayed her back to life. Thank you, all, from the bottom of my heart.
As it happens I had blogged just a week before Lily was born to ask for prayers for what I thought was my condition. I hadn't blogged in many months but felt called to ask for prayers for me and for Lily. Little did I know what was waiting just a week later.
My health in these past few months hasn't been good, to say the least. I chalked it up to being older, having lupus, and having so many babies. In many ways I blamed myself for eating too much, not exercising enough, etc. In the last month my waking hours were almost unbearable. Yet my blood pressure remained low, the baby seemed active and healthy on the monitors, my labs were decent overall. That last week, though, I couldn't ignore it anymore. I was enormous. Bigger than I had ever been with six weeks still to go. My clothes didn't fit, I was gaining many pounds per day, I couldn't even drive because the steering wheel and my stomach collided. While I was once able to take lengthy walks (even nine months pregnant) now I couldn't even get half way around the block before I had to turn back. With all that in mind I went to triage both Monday and Tuesday before Lily was born. My best description for how I felt was that I felt like my stomach had turned into a lead balloon. Lily was active and didn't seem in distress but I was very, very unwell. Labs and other tests (not an ultrasound) seemed OK so they sent me home both days. Thanks be to God I had an appointment with the high risk OB on Wednesday 8/21. I had been going to them once a month for a while. Before I went in I wrote a text to a friend that said "I can't shake the feeling that something is really wrong with the baby". Those were the last words I wrote before this whirlwind began. I had the ultra sound and Lily was estimated to weigh 7lbs4oz. At 34 weeks gestation. Her tummy measured 39 weeks. While that didn't concern me at first, as they led me down into a room to talk to the doctor I started to panic a little. In the past we had gone into an exam room. This room had couches and chairs and seemed more like a counseling room. I sat alone and waited somewhat anxiously. The tech came in to give me pictures and said congratulations. Would she say congratulations if there was a problem? I didn't know.
The doctor came in, made no small talk, and said she was concerned. She said the baby had to be delivered right away. I thought it was me in danger health wise and, while I didn't want that, I preferred that over my tiny baby struggling for her life. I'm not even really sure what she said next. I do know she was very kind as I cried and cried and felt so very alone. She told me to go straight to the hospital. I called Jesse and Hannah (who was watching my little kids) and texted for prayers and asked for our parish priest to come and anoint me. Our older children were at an amusement park with some friends from church and while I didn't want to alarm them I also didn't want anything to happen without them knowing how very much I loved them.
Once admitted to the hospital things moved really quickly. The high risk OB on call wanted the baby delivered immediately. Thank goodness I didn't google anything before she was born. There wasn't time. If I had known what lay ahead I don't know if I could have handled any of it. I was an anxious mess as it was. There are angels everywhere, though, and one of them is my favorite OB nurse who really set me up for an amazing team to get me through my fears and anxiety. Once anointed I did feel more peaceful and before I knew it was laying on the surgical table looking at a tiny little face. She was whisked away immediately. Jesse walked back and forth between her and I. Thankfully I couldn't see her because her belly was so giant and filled with fluid Jesse said it was unnerving. For my part the OB that assisted in delivering said she had delivered babies for 20 years and had never seen someone with so much fluid in them.
After recovery I was rolled into the NICU to see my precious baby for a few minutes. I was so naive to what was going on, and thankfully so. Once in my room I ate some, Jesse and everyone went home, and I tried to sleep. Around 3 am I woke up and called the NICU. The nurse sounded a little concerned but said the dr would come and see me soon. Stupidly I googled what they believed Lily to have, hydrops. I texted a friend because I was so shocked that the mortality rate even for those babies born alive was over 50%. I thought we got lucky. A few minutes later the nurse and two techs came in, told me to get up right away because they needed me in the NICU. My blood ran cold. This was our third NICU baby. They don't come and get you in the dead of night for no reason. I quickly texted my friend to pray and before I knew it I was sitting in the middle of an unbelievable nightmare. The doctor said they had drain Lily's stomach right then and that she might die. I couldn't even look at her. She looked dead to me already. Every single alarm was going and she was surrounded by what seemed like twenty people. The shriek I let out was probably heard throughout the entire hospital. They told me to call Jesse back to the hospital. I begged for a priest to baptize her. In the 60 minutes that followed I called on every angel and Saint and begged God like I never had before. They told me to go sit by her, touch her, talk to her. Even in the state she was in as soon as I held her hand and spoke to her she opened her swollen eyes and looked at me. I recalled all of the miracles in the Bible. I remembered Lazarus and Mark 5:41 "Talitha koum!" arise little girl and walk. I thought of my other children and how, even if I could come to terms with losing her, how devastated they would be. I remembered all the times I have heard that lay people have the power to heal and call down the Holy Spirit so I prayed over that tiny being in her isolet like I've never ever prayed before. From the depths of my heart I prayed for her healing. The priest came and baptized her, the tech took photos for me so I could hold her tiny hand. Jesse arrived at some point. Before I had to back away so they could drain her stomach, a procedure that would either save her life or that she wouldn't survive, I looked at her tiny face. I told that sweet girl to fight like crazy but that at the end of the day she would either be in my arms or the arms of Jesus. I told her she was so loved and she would always be safe. And at that point I felt peace. This baby was not mine. She is God's. The miracle isn't in the saving of her life but in my ability to accept God's will no matter what that is. And with my ability to find peace in whatever answer He gave us I would be able to help my children accept it as well. I knew we had thousands of people praying already, masses being said, emergency novenas. The doctor told me not to stop praying, that it was helping. Within a few hours of me being rolled into that NICU her stats were greatly improved. A few hours after that she received the anointing of the sick, was enrolled in the brown scapular and Confirmed. She had all the grace, her swelling was slowly going down. Watching the prayers unfold on social media was amazing. I felt so surrounded by love. People all over the world were praying and praising God - Raising a Hallelujah - for little Lily. I still didn't know what the outcome would be, I didn't know if she lived if she would have permanent damage, but I knew trusting God was the right thing. So we waited and prayed and hoped and accepted.
The next couple of days are a blur. They run together as one very long day. Lily improved at a rate that was truly unreal. One doctor called it a miracle. She said she had never had the life saving machines set at such a high level before. Within a couple of days I was holding Lily and nursing her. Friends, family, and strangers donated money and meals and prayers to help deflect the strain on our family. One nurse that I had said she heard about us on Facebook and then I was her patient that night. A NICU doctor said she was following the story via Facebook as well. I wrestled to reconcile the joy I was feeling with the reality of what others have gone through. Was the miracle, the hallelujah, because we received the best outcome? Or was it all the love we felt regardless of the outcome? Did it matter now that for weeks no one had listened to my cries for help. After 13 other pregnancies I kept repeating "I have never felt this poorly in my entire life." I'm not sure of the answers to these questions. We have experienced alot of losses in the last several years. We still praised Him and trusted. Maybe there aren't tangible answers. The message, I think, is to never lose faith no matter the outcome. This weekend I'm sitting at home with a beautiful but oh so tiny baby girl. I'm more than a little terrified that she will get sick or stop breathing or get too cold or get too hot. Ultimately I know she is in His hands today the same as she was throughout this entire pregnancy. I still feel a tremendous pressure to protect this miracle, this gift. Whatever will become of her tiny 5lb self?
In my mind's eye I see myself laying on that isolet begging God to spare her tiny life. I will never forget that moment, the fear, the feeling of being so alone, and the feeling of peace that followed. I know there are so many lessons to be learned from this experience. For now I'm soaking in this little piece of Heaven. And waiting my turn to hold her.
Thank you all for the prayers and support. The masses, the love, the notes, the kind words. Please know that each one of you has a special place in my heart and I will never forget the gift that your prayers gave to our family.
"He took her by the hand and said to her, "Talitha koum!" (which means "Little girl, I say to you, get up!")."
Mark 5:41
Lily's theme song for life is Raise a Hallelujah by Bethel Music.
