Our daughter, Lily Grace, was born to heaven on June 6, 2010. She was diagnosed with alobar holoprosencephaly (HPE) and a rare arrangment of trisomy 18 (isochrome 18q). To learn more about our experience, you may want to start at the beginning. Read Lily's Story: from Beginning to End, which is one of the first blog entries on June 24, 2010.


He heals the brokenhearted and binds up their wounds. Psalm 147:3

Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. 2 Corinthians 4:16-18

He will cover you with his feathers, and under his wings you will find refuge; his faithfulness will be your shield and rampart. Psalm 46:1


Wednesday, June 22, 2011

Blessed!!

I am truly blessed. That word actually seems like an understatement right now. I gave birth to a beautiful baby girl, Ainsley, just four days ago. Every mother who brings a child into this world has a story to tell of their own very personal and unique delivery experience. Most mothers I've come across love to talk about their childbirth experience. I have now had 3 deliveries, and each one has been quite different from the others. My pregnancy with Ainsley was great! I was relieved to have very regular appointments with specialists who kept a close eye on her as a result of our experience with our little Lily. All signs looked positive at each and every appointment. Despite the consistent good news, I couldn't completely cast my anxiety away. As my due date drew closer, I began to feel more and more nervous about the endless possiblities I may be confronted with during delivery.
Ainsley's birth was another reminder to me of how precious life is. Not that I needed another reminder of that, and certainly not in the delivery room, but God chose to use this experience to demonstrate His faithfulness and to remind me, yet again, that He is in control. Ainsley made her way into this world with a knot in her umbilical cord. When the Dr. was asked if it was a problem, she replied "No, but it could have been". I didn't completely realize at the time the potential danger this could have posed for our little girl. We were so relieved to see her, hold her, and hear her make her first noises. While I was surprised to hear that her birth weight was so much smaller than her brother's had been, I was proud to learn that her Apgar score was a 9.9/10. She was healthy, and by Dr. Sweeney's early description, "perfect"!!!
I had anticipated an emotional delivery as I prepared to bring my second daughter into the world. Instead I felt peace the moment she was placed on my chest. Remember the woman who had commented to me that Lily was coming back to me? Well, Ainsley reminded me of Lily right away. Among my most treasured posessions are pictures of Lily taken at the hospital. Most likely they will never be posted on this blog because they are far too personal, but you must believe me when I say that the similarities between Lily and Ainsley are undeniable.
After I came down from my delivery high, I began to think more about the knotted umbilical cord. I later asked the doctor for clarification on her comment that the knot could have posed a problem. She explained that this could have caused restricted oxygen flow, which could have resulted in a "demise" or death. Wow.
The reality of that statement hit me like a ton of bricks. When she left the room, I let out every bit of pent up emotion that I had been carrying around for the last nine months. I cried in my husband's arms as I thought about how I would have survived another loss. Of course he reminded me that our little miracle was healthy and not going anywhere, and I know he's right.
I don't think I took any bit of this pregnancy for granted, and I definitely didn't think about the delivery lightly, but this experience, in my opinion, was such an obvious reminder from God to never ever take this child's life for granted. He gave us this tremendous gift, and in that moment in the delivery room, He instructed me to cherish it forever.
Two days after Ainsley was born, as we prepared to leave the hospital, the pediatrician told us that he had detected a heart murmur the day before and that it seemed to be louder and more pronounced. He had ordered an echo to get a closer look at her heart. The echo found that Ainsley has ASD, atrial septal defect, which is a hole between the top two chambers of the heart. A pediatric cardiologist will see her in a couple of months to follow up on this, but it appears as if it isn't a situation to be overly concerned with at this point. Surprisingly, I took this news rather well. I have survived my own daughter's death and had just absorbed the fact that my second daughter could have died. I can handle this. My husband was the strong one when I had my meltdown the day before, but I needed to be there for him on this day. After receiving this news, he felt discouraged and he commented "we just can't seem to get a break". I can see where he's coming from, but as I'm typing this blog entry with just one hand, I am glancing down at our beautiful six pound ten ounce creation in my other arm and I know that we got way more than a break this time. We got a blessing in every sense of the word.

Monday, June 6, 2011

Birthday Girl

My dearest Lily,

Happy 1st Birthday baby girl!! We had such a great time celebrating you and your life on your birthday! Mommy misses you terribly, but I tried really hard to stay focused on making today a celebration of you rather than a time to mourn your absence. We spent the evening with your grandparents, aunt, uncle, and cousins. They all came together just for you, to celebrate you. We each wrote you a message on a pink balloon to send to you in heaven. I hope you received each one of them. You know, your brother was adamant about sending you a green balloon from him since that is his favorite color. He had such fun drawing pictures and writing messages to you on his very special balloon. He knew that it would reach you in heaven, and he was intent on watching it soar until he couldn't see it anymore . It brought tears to my eyes to hear him acknowledge that it was on it's way to heaven to be with you. I am so proud of him for understanding where you are and knowing that you are with Jesus, who loves you and protects you. After all, this is what brings us peace everyday.

I look forward to every occassion that we can celebrate you Lily! Your life has meant so much to me, and I treasure every single memory that I have of my time with you. I've expressed so many times what you have done for me. Your short time here with me gave my entire life meaning. You brought me closer to the things that are most important in this world. You have taught me more than I could ever imagine that I would have taught you. You have been such an inspiration and source of strength for me.

I look forward to the day that I will see you again, but in the meantime, I remain grateful for your life and your influence on me. You know that Daddy, Owen and I are preparing to meet your baby sister really soon. I am really looking forward to seeing her and holding her because I believe that she will remind me of you. I imagine that the two of you would have had so much in common, and that you may even look a lot alike. I'm sure I will think of you often as I watch her grow and develop. She will be a very special reminder to me of you in so many ways. You have both brought such precious and significant meaning to each other's lives in my eyes. Although it is still sad for me to think that you had to join Jesus before she could come into our lives, the two of you will always be my very special little girls.

I pray that you felt the love of your family on your birthday as much as we all felt your presence with us. The same God who loves you and holds you close has been watching over us to offer us comfort and strength when we feel weak. He is our common bond, and it is through Him that I feel most connected to you. You consumed my mind and heart all day long, just as you have so many other days throughout this past year. You are always loved, and will never be forgotten.

Remember Psalm 23: 4 Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me; your rod and your staff, they comfort me. Your Uncle Steve introduced this verse to me through music. He used to sing it in church, and it has always had special meaning to me. It is a song that I now think of you when I hear. Lily, God never lets go. He is always there, and I will be too. I love you to pieces.

Happy Birthday sweet baby girl!

Love always,
Mommy