Thursday, June 13, 2013

How It's Been

Things are overall going well around here. Tired... but what can you expect with a newborn? And a newborn who you are quite worried about keeping alive... I hate that we have to think that. I've been meaning to blog to remember all these first emotions and feelings.

When Lila was first born and given to me (was able to hold her right away), I was terrified. I was scared to hold her. She had heart decelerations all throughout labor and she came out looking tiny, purple, not crying... and tiny. She was fine... healthy. But, I wasn't enjoying holding her at first. I was too scared. In fact, in the video of right after she's born, I'm constantly saying "she's making me really nervous"... I had my sweet pediatrician friend there who came over and pinked her up, examined her, and weighed her. It was much more reassuring. I was still scared when she gave her back. But, felt better. She never cried a lot and still doesn't cry a whole lot. For the first few minutes, I really was just scared of her...

But, then, I instantly fell in love with her. I was always so afraid that I wouldn't love her as much as her sister. That Jovi would always hold this high place in my heart and I wouldn't ever love another baby as much as her. So silly. Because I loved her immediately. Just as much as I love Jovi. The love is the very  same. I was so surprised. And so glad. It felt so good to hold her (after a few minutes) and felt so good to hold life again. Life that is ours... The day she was born was such a redeeming day. It was a day that was so good. Sooo, sooo, sooo good for our family.

The first few nights Lila refused to sleep in her pack n' play. We were both too terrified to let her sleep anywhere else (sucks actually knowing a baby who has died anywhere and everywhere), so we took turns with her on the couch holding her. All night... we were getting rather exhausted not sleeping more than 4 hour stretches... It was getting pretty rough. Thankfully, our pediatrician (and friend) said to put her feet or back or top of her head on the pack n play somewhere instead of the middle of the bed. That seemed to work well. She can go 4+ hours at night in her own bed... doesn't mean she always does. But, she is at least working on it. And, I'm sleeping at night. We came home with an apnea monitor. I swear it's the only way I'm sleeping. I still don't take naps... I assume this is because Jovi died while I was napping... so I just won't/can't do it. Not yet anyway. But, I'm able to sleep at night. It's so true when you realize you have to finally live. I struggled with sleep for the first week or so... but then I just got so exhausted that one night I finally slept for a long period of time... and Lila kept breathing. It's gotten easier every day.

Little L has already been so healing. I find myself smiling more. I find myself feeling lighter. I find my heart feeling happy. Please don't get me wrong. Life was good before she came. I had so much. But, she has just came and made it that much better. In fact, I didn't think she could... and she did. She is just so good. I have a really hard time trying to define what she has done for me already. But, the quote I posted about rainbow babies a month or so ago says it perfect. She has came and given my cloudy, very storm filled life with so much light. And so much joy. She has just been so fun. We have even more sun in our lives because of her. The storm is still very much there. My heart isn't fixed. For the rest of my life, I'll grieve for Jovi. I'll miss her always and forever. I'll think of her often. But, Lila just makes it... easier. Thank you, Lord, so much for this precious baby. I feel so very blessed to have her.

Little Lila had an EKG after she was born. Her EKG came back saying she had Prolong QT. Those with babies who have just died for no reason, will probably know what this is. We found this out on the day we were leaving the hospital. It was hard to hear. Did we have an answer to Jovi's death? But, did it come at the cost of her sister having to suffer? And us worry even more about her life? It felt liberating to have a possible reason as to why my baby died... but then felt terrifying for Lila. We later got called that the EKG probably was fine but newborns can throw this on an EKG and we just needed to repeat in two weeks. I felt defeated at first... like we lost our answer. It took me awhile to finally realize that no answer will change Jovi's death. Jovi died and I can't go back and "fix" it no matter what we can find out or figure out. I'd rather Lila be healthy than have a syndrome she has to deal with the rest of her life. Jovi's life can't be changed now. It took me forever to finally realize this... I can't change what happened to Jovi if I find out why. She's still not here. She can't come back. Her sister is here though.  And this diagnosis will change her life. I don't want that for her or for us. So here's to praying that her repeat EKG is normal.

While it's been overall going well, I still have moments of sheer panic. I still have moments where I just hold her and cry... begging God to keep her safe. Pleading with her not to leave me... I still have moments I lay her in her bed and feel so panicked that she won't wake up. I still am grateful when she does wake up... even if it's numerous times in one night. I still have moments where I'm terrified she won't live or have a hard time buying something in a bigger size. I'm trying so hard not to live her life in fear... and to enjoy her. Mostly, I do. But, I definitely still have times of paralyzing fear.

Jovi Sloan- you were so missed these last few weeks. You should have been coming to meet your sister, too. I should have came home to my three babies instead of just two. I should be able to have a picture of you with your baby, too. We've thought of you so much over the last two weeks. Your precious sister hasn't came and changed that. In fact, I think we've talked of you even more. You are so very missed. You are so very loved. I wonder, often, if you told your sister about crying when no one is holding you... She doesn't like the swing just like you didn't! Did you tell her just to cry and someone would pick her up? Did you meet her? I can't wait to find out... she learned from the best if you gave her some advice. We miss you more than we can say... I love you to Heaven and back, baby.

Jovi Sloan

Lila June

"There is no fear in love, but perfect love casts out fear. For fear has to do with punishment, and whoever fears has not been perfected in love." 1 John 4:18

"I saw the Lord always before me. Because he is at my right hand, I will not be shaken. Therefore my heart is glad and my tongue rejoices; my body also will live in hope, because you will not abandon me at the grave nor will you let your Holy One see decay. You have made known to me the paths of life; you will fill me with joy in your presence."
Acts 2: 25-28


  1. I'm so glad you are all doing well. I love the updates and the pictures of Lila. ((Hugs))

  2. This post could have been written by me, almost. It echoed so well my sentiments in the early days of our Nathan's life here. I still have a lot of fear but our rainbow healed me in ways I cannot comprehend.