Life is fragile.

Today, Lydia and I drove up to Kaiser Sunset in Los Angeles, where we will be delivering, and met with a new round of doctors. We had an echocardiogram with both a Perinatologist and a Pediatric Cardiologist to further detail Charlotte’s diagnosis and plan for treatment.

They are still leaning towards a straight forward transposition, but there are a few new concerns. Her pulmonary artery, one of the vessels they have to switch, is measuring a bit small. Almost half of what it should be. They assured us that this may not be an issue because she is still growing, but it could cause complications if it doesn’t grow large enough. There also appears to be a Ventricular Septal Defect (VSD) or a hole in her heart. This again isn’t necessarily a bad thing, as it can allow more mixture of blood between the ventricles, but they won’t know the extent of the hole until she is delivered. If it’s too big it can cause more complications. These are all things we really don’t like to hear; the unknown’s, the what if’s, the let’s wait and see’s, but we do still feel an overwhelming peace and comfort through it all.

A highlight was getting to tour the Labor and Delivery department as well as the NICU where Charlotte will recover. We were greeted by such an amazing staff and treated not as patients but as family. We probably met over twenty doctors and nurses and they each wanted to know our names and they each made us feel so comforted and assured that we were in the right place. We really felt a lot of love in that place. An intense moment came when Lydia and I walked into the NICU surrounded by a dozen or so premature and critical care babies. We were brought to tears by the site. Life is so incredibly fragile.

Our next cardiology appointment is in January. Please continue to pray for our little girl. That she would be healed. That her valve would grow to the perfect size. That the hole would seal up. That she would be restored.

Thank you for journeying with us. We love you.

Love, Jon and Lydia

He is never too busy

This is our story right now, this is our story right now, this is our story right now. I wake up daily thinking, "Is this really happening? Is this really OUR story?" Yet, amidst this nightmare of a reality we are facing, we feel joy and hope. The kind you feel when you walk outside on a perfect summer day and there is not a care in the world. How can we still feel this kind of joy during these times? I have realized that I have been feeling more hope the more I get to know who God really is. I’ve been learning to cry out to Him in times of anger. I have been weeping in His lap asking Him for real answers. I’ve been learning to be real with Him. No more faking. No more saying, “I’m fine,” when I’m not. I have nothing to lose, so here I am Lord, all of me, the good and the bad. Over the years I have built this wall up around myself. It’s hard to let people in. It’s hard for me to be real and express my real feelings to others. I have bad habits of saying, “Everything is ok,” then getting in my car and losing it. I have found myself, on many occasions, driving down the freeway weeping then telling myself, “Suck it up, your fine.” Does God really want me to weep in silence, alone? No.

He wants all of me, not just the thankfulness and joy. He wants and loves it all. This last week I have been practicing being me, being honest with how I feel. By doing this I have been getting to know God on a different level. I am falling in love with a God who is good, shows beauty, love, trustworthiness, is self-sacrificing, and forgiving. He is powerful and caring and is only out for my good. He wants to hold me in His arms and cradle me as his daughter. But, if I don’t cry out to Him and tell Him I’m hurting I will miss out on curling up in His lap and feeling the overwhelming comfort He has for me, Lydia Sue Rosene, His favorite.

I choose to wake up everyday, crawl into His lap and be me. I choose to be real and except the unconditional time and love He has reserved just for me. He is never too busy!

My precious Charlotte,

You aren’t even born yet and you are teaching your mama so much. I can’t wait to kiss your face all over, count your fingers and play piggy with your toes. I can’t wait to brush your hair and dress you up. I can’t wait to get our nails done together and have picnics in the park. I can’t wait to teach you all about Jesus and pray with you everyday. But most of all I can’t wait to hear you cry out, “Mommy,” and run into my arms. You are my dream come true little one!

XOXOX,
Mommy

The good things peculiar to the good

“I know that Christ is closer to me than I am to myself. Christ lives in me and I live by his faith. I am not alone. The love of the Father, the redemption of Jesus and the communion I have with the Spirit are not based on anything I do. It is a gift from the holy Spirit to believe in a God who is good even when things look bleak”. James Bryan Smith - The Good and Beautiful God

I am going through a book with a few friends called The Good and Beautiful God. It has been leading us through a journey to better understand who God is and in turn helping to expose some of the false narratives we have engrained in our minds. This weeks chapter has really rocked me and helped me to understand some questions I ask from time to time. It’s been hard not to ask, “Why Lord? Why us? Why little innocent Charlotte? How did we fall into the 1% chance of a heart defect? What could we have possibly done to deserve this?” This week I was reminded of John 9:2-3 when Jesus was asked why a man was born blind. Whether it was because he had sinned or his parents had sinned. According to the common narrative of that time, someone had to have done something to deserve such a condition. Jesus transforms that narrative and shows us a God who reveals himself through our brokenness. Jesus responded by saying, “Neither this man nor his parents sinned; he was born blind so that the Lords work might be revealed in him.” In the end Jesus healed the blind man and so revealed the power of God. It was used as Gods chance to manifest healing power in the man’s life. I can already see Charlotte’s testimony and blessing on others unfolding before us. Whatever happens, I know that God is good all the time and all the time God is good.

I will never understand why sometimes the sun shines on the evil and rains on the good. It’s not something worth wasting time trying to figure out. Saint Augustine says, “Rather we must seek out the good things peculiar to the good, and give the widest berth to the evils peculiar to evil men.” I choose to focus on the unconditional love and goodness our father has for us. I am reminded of this daily when I wake up in the most comfortable bed on earth, next to the man of my dreams. Realizing we are so wealthy and blessed just by owning a refrigerator filled with food and a car to drive us to our jobs. We have the most supportive community and an incredible family who would do anything for us. He always takes care of us. Why would he stop now? I will choose not to loose sight of all the blessings in my life even when the weight of this world tries so hard to pull me in the opposite direction. We have discovered and are focusing our hearts on the “things peculiar to the good” because His yolk is easy and His burden is light. Never have those words brought us so much comfort and joy than now.

- Love, Lydia.

The Diagnosis

After much anticipation we just got back home from our first visit with Charlotte's pediatric cardiologist.

Amazingly, we started off our visit by praying with our doctor. What a breath of fresh air that was. He's a believer and is part of the church our church planted from. Crazy, huh? God works in such incredibly detailed ways. We had an immediate connection with him and could not be more blessed with such an amazing man of God and an incredible doctor to walk with in this journey.

After a lengthy echocardiogram he diagnosed our little girl with 'simple' d-Transposition of the Great Arteries. "Simple," meaning there are no other heart defects like holes or shunts that were found.

So, what this means is that she will have open heart surgery approximately 3 to 7 days after birth to switch the arteries. If all goes well, we would be able to take her home between a week and a month after surgery. The prognosis for a healthy and normal life is very high, around 95%. She will have to be monitored the rest of her life, but we are obviously very relieved by the high success rate. We are so blessed with the technology and care we are offered here. For those that are wondering, we are due in the middle of March.

We are still going through many emotions, but the most profound one is a feeling of peace. Even our doctor said that he felt an incredible amount of peace in meeting with us. He also said that this was the best appointment he has ever had in delivering this kind of news to parents. God is sustaining us, and His Spirit is comforting us in ways we don't even understand. We know and feel His nearness to us and our little miracle. He is good, all the time.

Even after her diagnosis our doctor prayed for us before we left. He prayed that our little girl would be healed. We still hope and pray in that thin space where Heaven meets earth that brings miracles and healing here and now. Please keep praying for our little girl and throughout the rest of this journey with us. We couldn't do this without all of you, even those we haven't even met yet.

Thank you.

We will give more updates as they come.

Much Love,

Jon and Lydia

The Night Before

It’s the night before we meet with our Pediatric Cardiologist. The last few weeks have felt like years have gone by. Tomorrow the Dr. will diagnose her heart condition as well as give us the run down on what surgeries she will need. I sit here and think about all the “what ifs” and I am reminded of the promise the Lord gave me. He gave me a vision of my sweet baby Charlotte dressed in white, like a bride and the Lord walking her down the isle. This vision I’ve been getting over the past 7 days is a reminder of the Lord’s extravagant, never ending love for our baby. He mourns with Jon and myself in our darkest hours, as we weep in one another’s arms. He celebrates victories of negative chromosomes tests with us. He gives us a peace that surpasses all understanding. He makes us feel complete when all we want to do is fall apart.

As I listen to the song “How He Loves Us” the line “heaven meets earth like a sloppy wet kiss” makes my heart happy knowing that when Charlotte enters this world it will be just like that, with "a sloppy wet kiss.” Charlotte has already touched many lives and she hasn’t even entered this world yet. I’ve received so many stories of people I don’t even know pouring out praises over our baby girl. I got a call one morning from a teacher telling me her whole kindergarten class had been praying over Charlotte. She said parents had been coming in asking who Charlotte was because their 5 year old had been praying for her out loud before bed every night. We are blessed with a God who hears our cry’s, who answers our prayers, who meets us on our knees when we can’t stand and who stops the world to hear the prayers of children.

Charlotte, you are loved more than any words can express. You will be our miracle, our little bit of heaven on earth. What a privilege it is to carry you in my belly every day, to feel your little kicks. You make me feel complete. You are simply perfect.

Love,
Lydia

Our little girl

Here are some ultrasound pictures of Charlotte.

Isn't she cute?!

The Call

Well, we had one of the longest weekends of our lives waiting for the first test results. There are so many emotions that we have experienced that it's hard to put it into words. There were times of great sadness, amazing hope, and others where we actually found ourselves laughing together (yes, we haven't lost or forgotten the incredible reality that we are having a baby!)

This weekend has had one common theme; community. Whether it was people calling us, praying with us, bringing us meals, coming over just to say hello, or simply embracing us just where we were, our community of family and friends has been there in ways that leave my wife and I speechless. We are forever grateful to you!

So today, as we decided not to leave each others side until we received the phone call from our Genetics Counselor, we prayed and waited. Then the phone rang and we put it on speaker phone. "Hello, Jon and Lydia, this is Jessica and I'm calling with good news." Immediate rejoicing filled our hearts and I began dancing around the room. She said that the initial results were all negative for a chromosome issue, but that we would receive more results in the coming weeks, so keep that in prayer! We praise God for this news and thank you for celebrating this milestone with us! We have an appointment with our cardiologist in two weeks to find out the diagnosis of her heart defect. Please, keep the prayers coming and join us in claiming complete healing for our little girl.

Celebrating this victory with anticipation for the next,

Jon and Lydia

Our baby girl

Today, my wife and I heard the words you never expect nor ever want to hear, "I'm sorry, but your baby has a heart defect." The moment those words left our doctors mouth our joy quickly turned to shock. We sat there crying for a while before it began to sink in. We are faced with a diagnosis that is scary and uncertain. For now, she has been diagnosed with Transposition of the Great Vessels (TGV). Basically, her vessels in her heart are switched so oxygenated blood from the lungs returns back to the lungs instead of to the body. There also may be some chromosomal abnormalities involved. Lydia had an amniocentesis, which is frightening in itself, to see if they can rule out a chromosomal issue or see if it's just a heart condition.

We are praying for a miracle. First that our daughter doesn't have any chromosome problems and that her valves are healed. We find out on Tuesday if there are any chromosome issues. The doctor told us that best case scenario we deliver our daughter and she goes into open heart surgery to have her valves switched. Fortunately, the prognosis for normal lives after surgery is high. We hold on to the truth that our God heals, redeems, and restores here and now. We ask for your prayers for our daughter, that she would be fully healed and that He would give us a peace that surpasses all understanding. Our love for our little miracle baby is only growing and we thank you, our family, for loving her with us.

Love, Jon & Lydia Rosene