Lisa Tells Madeline's Story

From Lisa, my beautiful wife and amazing mother of Madeline Grace:

As I sit here and begin to write, I imagine looking out into a sea of people who love our sweet Madeline and I wonder if I will be able to speak at all, I'm going to give it a go and hope that God will fill me with the same strength He did as I stood by Madeline's side through the good days and bad days.

I have never been more terrified as I was the day that Madeline was born. I knew everything I could about her heart condition but when we discovered that she wasn't growing well we could only presume that something else was going on. On August 15 God gave me the mother's intuition that I needed to check on Madeline because something just wasn't quite right. Sure enough we soon found that it was time for her to make her grand entrance into this world. I was 35 weeks along but knew that she was tiny for her age, as I heard the words Emergency C-section, I fell apart. How could she possibly survive so tiny and with a sick heart? I feared that she wouldn't even make it through the day. When they told me that she was out and that she was alive my life was forever changed. I gave her a kiss and she was whisked away to the NICU.

I had never seen such a tiny baby in my life. I knew nothing about a NICU and the daily miracles that took place behind those walls. We soon began our crash course in medical lingo and I am amazed at how much I learned by the end of our stay. Well, Madeline amazed us all. She made it through her first day, and then another, and I some point I stopped counting the days. While we were still at St. Joes I got to hold Madeline for the first time. What a wonderful moment that was. She was so tiny and she curled up so sweetly under my chin. I felt her soft hair on my cheek and I never wanted to let go. I held her till my legs were so numb I could stand it no longer. One of my favorite moments early on was when we took her off of the ventilator for a whole day and a half. We heard her cry for the first time, the sweetest tiniest cry you have ever heard. She sounded like a tiny pixy fairy. Then back on the ventilator she went.

Soon it was time to say goodbye to St. Joe's and move over to The Children's Hospital, Shanker and I were a bit skeptical as we walked into our new home. Everything seemed so new and sterile and the staff seemed so young. Very soon we realized that we were in the best place possible for Madeline and for us. The staff was amazing and the love they showed our sweet little girl was so special to us.

Madeline had a lot of issues to overcome and it seemed that as the days went by she became more and more complex medically, yet despite all of her obstacles she started to develop the sweetest little personality. She was a strong girl, quite particular in her likes and dislikes, if she didn't like something she would express it in a way that would certainly frighten most parents. Though she was strong and feisty, she was also ever so sweet. She would look up at you with those big brown eyes and follow every move. She spoke mostly with her eyes. For those of us who knew her well, we could tell how she was feeling just by the look in her eyes. She loved having friends around to talk and sing to her and hold her pacifier. Most of the time she was quite a social girl and if she wasn't in the mood, she would let you know. One of Madeline's favorite things was to be rubbed on her forehead. Every time she would get this look of bliss in her eyes. I loved when she used her big eyes to check in with me when we had visitors, she would look at them and then look back at me as if she was just making sure I approved. There were days when she would honor me with her tears, as long as I stood there with her and held her pacifier she was happy, but the moment I walked away she would cry. Though it hurt to see her so sad, I felt so honored that she wanted her mommy by her side which is where I spent most of my time.
Madeline’s Blood transfusion Video—I know this video is not the greatest quality because it was made on our phones but I love it so much. Just watch her sweet eyes. This was just after her heart surgery and after a blood transfusion. We grew to like transfusions because they were like a cup of coffee to Madeline.
The kids watched that video countless times in complete adoration of their sister.
Madeline also adored her sisters. It was obvious that she knew their voices and that it brought her joy and comfort to have them around (at least until they got too noisy!) I loved watching the girls interact with her. They were precious, the way they played with her fingers and gave her sweet little kisses. They loved singing her songs and Madeline loved it too. Some of the favorites were Away in a Manger, the ABC’s, and the wheels on the bus.

She had other visitors too, friends and family who stopped by to meet her, pray with her, hold her, and share some of their love. I wish everyone could have spent time with her, but she was just too fragile.

There was a great chunk of time in Madeline’s life, she was without infection and there were no major happenings for about 2-3 weeks. We met Dorothy during one of those good days and she came in and gave me one of the best days ever. Madeline was about 10 weeks old and 3.5 lbs. at the time and she had never had a bath! I soon found out that Dorothy was known for her baths and for making the babies look their best. I was a bit nervous but her confidence made me feel so capable. We lined Madeline's bed with diapers and scrubbed her clean. And if that wasn't special enough, we then got her dressed for the very first time. Something I had dreamed of since before she was born. The tiniest outfit I could find was still a little big, but wow, she looked so sweet. I loved the way the clothes hid her many wires and made her look so normal and healthy. After that Shanker and I got to hold our precious little bundle. It was a great day. There weren’t many but Madeline did have a handful of great days.


I'd love to tell you all of the things that she did overcome in her life but the list is rather long, some of the biggies were heart surgery at two weeks and two pounds, numerous lung infections, surgery on her diaphragm, a feeding tube through a hole in her tummy, a few MRI’s , a heart catherization and many more. One memorable one for me was when she was being re-intubated (or getting a new breathing tube). It was my first time experiencing such a thing and I chose to stay and pray our way through it. Well, once the tube was out, Madeline wouldn't let the new one back in. She held her breath and clamped down so hard her heart rate started dropping quickly. It is moments like these when God showed me strength beyond all comprehension. I would expect to be a puddle on the floor as I watched my baby’s heart rate plummet, yet He always kept me on my feet, praying like crazy. The doctors were amazing and calmly got everything where it needed to be. It is their composure that is truly impressive in the tough moments. Madeline gave us all many scares, yet God sustained her through more than I ever would have imagined.

I know there are many stories of Madeline's days, because rarely did she have a boring day. Something was always going on and usually it wasn't much fun. What was fun however was getting to know our nurses, the NICU staff and doctors, and the other NICU babies and families. They are all amazing and I am sure that many of them will forever be part of our lives. Not many people knew our Madeline like the NICU staff did. In many ways, they were her family. It became a huge blessing to Shanker and myself to find many people along the way that know and Love the Lord. We will be forever grateful for those faithful people he placed around us during our journey. Not only did these folks do their jobs beautifully but they were able to remind us of the Truth as we walked through the tough times together.

Sara was our first nurse at Children's and what a blessing she was from day one. Not only was she there on day one and many days to follow, but she was there for Madeline's last day. I have never know such incredible strength from the Lord as I experienced on that last day as Shanker, Sara, and myself worked through those tough moments together. Though our hearts were broken, we still had little Madeline’s body to care for. We turned on the worship music and reminded each other that Madeline had already gone to heaven and had a new body, the rest was just formalities. We got her all prettied up and in the end her old, broken, body laid to rest in a beautiful pink treasure box. I have never known such deep love for Jesus until that day when I was so thankful for his death on the cross that made the way for us to live eternally with him in heaven. And I can be confident in the fact that our little girl is safe and sound in his loving arms and there she will be until we meet again. Sara thank you for your confidence in the Lord as you walked us through that day.

There is much more to Madeline's story outside the NICU walls but before we get there, I want to thank those who made it possible for Shanker and I to spend as much time with Madeline as we possibly could. I know there are not enough words to thank you for the amazing gift you have given us but I will try. To the NICU staff, our hearts are filled with a gratitude that is so big it is hard to contain. I know there are sick babies that don’t make it even a day and we were so close to being in those shoes. Madeline was a pretty sick little girl and you all gave her the best chance at living possible. Day after day she surprised us with something new, yet we know she was a fighter with a will to survive and you all did everything you could do to help her overcome each obstacle. Because of your skills and expertise we got to spend so many wonderful moments with her and we will cherish those moments forever.

Thank you to my sister Linda and her family for taking our kids almost every day for the past 5 months and for being the coordinator of all activities as my brain was completely preoccupied. You are amazing! Thank you to her support system of church and friends that helped her family function through these last 5 months. Thank you to my parents and Shanker’s parents who went above and beyond in their grandparent duties and stepped into our home and kept it running during hard times. Thank you to our church family for taking care of groceries, meals, and cleaning the house so that our time could be spent with Madeline and her sisters. There were many others that kept life rolling thank you to MOPS and Terri from There with Care who adopted our family and kept our kitchen well stocked. Thank you to all of our family and friends who were a constant support even from a distance. It was because of you all that we got to really know our baby girl and for that we will be forever grateful.