**A few weeks ago, some friends of ours (I actually mentioned their wedding in THIS POST), began a NICU journey with their newborn baby girl that had me sleepless for many nights as I prayed for them. Many of the people in our community have been hovering over their Facebook pages looking for updates on their daughter’s miraculous birth… as well as the revealing of an unexpected diagnosis. Their story is amazing and powerful and needs to be heard. Our friend, Phil – who is a pastor in our area, has given me permission to share his latest Facebook post and a few photos here with my sweet Happy Home readers and faithful prayer warrior friends. This is the story of Baby Jane….**
My wife told me we were expecting our second child two days before Christmas last year. The thought of a growing family made us so happy. There are striking differences between a second pregnancy and your first. When you’re pregnant with your first child everything is new. A world you were completely unaware of opens up before you and you’re sucked in before you realize it. A second pregnancy is much more like the other stuff of life. Exciting and thought-provoking, but measured.
During this pregnancy we ran into a handful of complications. Doctors found a small hole in Jane’s heart, and in the closing weeks of pregnancy her growth became restricted.
The complications were certainly concerning, but at the same time the doctors were very reassuring that these were somewhat common symptoms.
Over the last two months we have had multiple ultrasounds with both a cardiologist, and our high-risk pregnancy doctor. At times the appointments and the constant worry seemed annoying and unnecessary.
In mid-August, after seeing Jenny’s doctor, and fresh off my birthday celebration, which featured my first attempt at smoked pork from the new smoker, everything changed…
At 3:00am, Friday, August 16th, Jenny’s contractions began. At first they didn’t seem like contractions at all, but soon became regular cycles every ten minutes. Then, seven minutes. Then six. The specialists tell you to wait until your contractions are five minutes apart before heading to the hospital otherwise you just spend an exorbitant amount of time laying in the hospital room bed. At six minutes apart, it was time to go. We hurriedly threw clothes in a bag and called Jenny’s mom to come over and watch our 19-month-old son, Oliver.
When Jenny sat up from the bed to walk around the room, she began to feel an intense pressure. In the back of her mind she thought, “Is the baby coming? It can’t be.” She continued to get ready to leave with the pressure intensifying. Needing to be helped, I guided her slowly down the pathway to our driveway. When we were less than a few steps from the car, Jenny felt the intense pressure again and said, “I think the baby’s coming!” I, of course, immediately replied, “No, it can’t be.” They don’t come this fast. Maybe it was her water breaking.
Again, Jenny said out of breath, “The baby is COMING! THE HEAD IS COMING!” I looked down, and as Jenny was standing up, I could see Jane’s head coming out. Shocked, I dropped everything. Keys, phones, bags. We both held onto the baby’s head and in what felt like a split second, while Jenny was standing up in our driveway, at 5:45am on Friday, August 16th, 2013, Jane Abigail Letizia fell into my arms.
Completely frozen, we had no idea what to do. Drive to the hospital? Call 911? Calling 911 seemed like the best option for someone in my state of mind. Jenny, amazingly, stayed standing up with the baby, cord attached and all, gently rocking back and froth. It was like Jenny fell into this deep, peaceful meditation. I, on the other hand was the opposite.
Jenny and I have both commented on how strange and beautiful it was to simultaneously feel complete powerlessness, and the intense presence of God in the same moment. It’s the only way we know how to explain it.
The dispatcher asked us to go back inside the house if we could make it there. So, with 4 hands around this little 4 pound baby, we waddled back up the pathway to our couch inside. It seemed like ages for the paramedics to arrive. In reality, it was only a staggering four minutes. I met them out by the road.
As they attended to my wife and child, they determined Jane’s color looked good. She was OK. In an amazing moment, they handed me a scalpel, and I cut the umbilical cord on our couch.
After rushing us into Labor & Delivery, nurses quickly attended to Jenny and the baby, as did our neonatologist. After Jenny was placed in the hospital bed, I was asked to accompany the baby to the NICU. Because we had come into the hospital completely backwards, we had to inform the staff of the recommendations made by our doctors for the baby to go straight to the NICU upon birth. The hole in her heart, her growth restriction, and the possibility of an underlying genetic issue.
As I filled the doctor in, he explained to me the tests they were going to run. He then asked if we had any chromosomal testing done during the pregnancy, and I replied, “No, but we knew there was a possibility that something could be causing her lack of growth.” The doctor said the first thing he thought when he saw the baby come in, was Down Syndrome.
Now, I have to go back and fill in a few more details. I believe deep down inside, all throughout this pregnancy, I knew something was different. Something was going on. I’m a natural worrier, and over the past three months I have been wracked with worry and anxiety about the possibility of something being different about our little girl.
And when she fell into my arms, I saw it. I could see it in her face. She was a Down Syndrome baby. In the craziness of the moment, I put it out of my mind, but riding in the ambulance, in Jenny’s arms, I saw it again. I knew.
The doctor said he would send off a genetic and chromosomal test to determine if Jane was indeed born with Down Syndrome. It would take 7-10 days for an answer to arrive.
All of this happened in an hour and a half. I told Jenny the doctor thought he saw Down Syndrome in Jane. We knew it could be a possibility, but now it was becoming a reality. And right then, with my mom on my left, and Jenny on my right, I came unglued. The rollercoaster of the last few hours, and then seeing Jane most likely had Down Syndrome, was too much for me. I broke. We wept together. The tension of a few months finally released. It felt good. It felt right.
In that moment, Jenny shared with me a passage of scripture that had never caught me before:
2 Timothy 1:7 “For God has not given us a spirit of fear and timidity, but of power, love, and self-discipline.”
For the next 24 hours, I must have repeated those words to myself a hundred times. I would think back on the delivery and recite the words. I would think about Down Syndrome and recite the words. I would think about an uncertain future, and a four pound little girl, and recite the words, “For God has not given us a spirit of fear…”
Jane has now been in the NICU for 11 days, and is almost set to come home. Slowly, she’s gained weight, learned how to eat, spent 3 days under a bilirubin light, and days readjusting her body temperature to normal.
On Friday, August 23rd, one week after her birth, the full chromosomal report came back positive for Down Syndrome.
Jenny and I cannot express enough the gratitude we feel. To God, who is seeing us through. To our family who has stood by us. To our friends who have visited. To our church family that have taken charge and proved God is doing something special at CityChurch.
We are overwhelmed by the love and care we have received in the NICU from our nurses and doctors. In some ways, it will be sad to leave because we’ve formed friendships and bonds in the moment of crisis. These dear saints are doing God’s work.
Jenny and I, along with our family, are still processing what it means to have a child with Down Syndrome. All I can say is, she’s already impacting our lives for the better. She’s making us love one another more, and she’s revealing the selfishness of my heart and my desires.
We have a lot to learn about caring for a child with Down Syndrome. It will be a unique journey, one with many valleys, plateaus, and peaks along the way. In the little research and reading we’ve done on Down Syndrome, we’ve already come to believe Jane is God’s blessing to us. That WE are blessed to have HER in our lives.
Due to unprecedented prenatal testing in today’s world, nine out of ten babies diagnosed with Down Syndrome during pregnancy are terminated. 9/10.
Here’s what I know and believe for Jane.
Psalm 139:13-16 – “For you created my inmost being;you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place, when I was woven together in the depths of the earth. Your eyes saw my unformed body; all the days ordained for me were written in your book before one of them came to be.”
The name Jane means “God is gracious.” Although we don’t know how just yet, Jenny and I believe Jane will be God’s grace in our lives.
Somehow, she will reveal the love of Christ to us and to this world in a way that we have not yet experienced.
There is a long road ahead for her, and for us. A road paved with many hours of doctors visits and therapy, but more so with love, and family, and joy, and grace. God’s grace. I can’t wait for you to meet Jane.
Thank you so much for your prayers. For standing with us these past few weeks, and for standing with us in these weeks, months, and years to come.
**Please pray for Phil, Jenny, Oliver and Jane. Since he wrote this, they have been discharged from the hospital and are settling into their home as a family of 4. If you feel led, share this story with the people in your world so that everyone can hear about the hope, peace and rest we have in Christ – no matter our circumstances. He is good. Thank you, Phil, for giving us this precious gift.**
I have worked for many years as an SLP with adults and children with Down Syndrome. I will tell you they are the most delightful people!! Always full of joy, a smile, and oh so sweet, loving, and kind! They give the greatest hugs! They are one of God’s greatest blessings to this earth. I believe it with my whole heart. May God bless your friends abundantly in their journey and adventure with little, beautiful, baby Jane!! She is a lovely and wonderful gift!!
I also agree with your comment (former SLP as well now SAHM). Although there will be challenges along the way, Jane is a special gift from God. I cant get over that 9 out of 10 Down syndrome babies are aborted in utero. So sad…
What a moving story! I will include Jane and her family in my daily thoughts and prayers. Thanks for sharing this.
Yes! I agree! They are an extra special gift from God!
What a beautiful baby Jane is. That was my first thought upon seeing her picture before even reading the story. I was struck by her perfection. God bless you as you seek his face. What a special family you must be for God to entrust Jane to you. Be blessed in the smooth and bumpy places.
I’m in love! Welcome to the world, beautiful baby Jane!!!! <3
What a gorgeous story. I fought back tears. That verse is one of my favorites as well. Please share…they’re daughter is absolutely gorgeous! And I said a quick prayer for their amazing family.
Tears…but what a great story! Jane is beautiful and how lucky she is to have such wonderful parents!
I have many friends with children that are Down’s. Also, as a teacher, I have been blessed to be part of the lives of Down’s children. Tell the parents to check out: NoahsDad.com.
I am in tears ! You are so blessed to have been entrusted with such a precious gift ! This is a beautiful story . I am so sorry to say I have friends who chose different. It haunts me to this day,the begging I did for them to give him to me,to give him life.You dear ones have Gods Heart !Little Jane is perfect .God bless you and your family as you Honor life !
Preppy Pink Crocodile
What a beautiful story and an even more beautiful little girl!
What a terrific birth story! We welcomed our little guy, Owen, 8 months ago after a prenatal diagnosis. I’d love to get connected to this family! Here is my email: [email protected]
All children are a great blessing and I am sure they will soon realize that Jane is not that much different than any other baby :). Praying for them during this season of the unknown!
Here is my blog, too, that I started just after our diagnosis.
A couple in our church adopted two DS boys. They are now 18 and 20, living in an apartment, holding down jobs and continuing to bless the socks off everyone who knows them. They are full of joy and so happy about the littlest achievements. Everyone in our church has been humbled and reminded of how much we take for granted. It’s a privilege to know them. Praying for you all!
I’m a teacher for special needs children. Down’s syndrome is not something to cry or be sad over, but to rejoice in. Jane will bring you more joy than you can possibly imagine right now. Each of my students that have been ‘Down’s kiddos’ hold a special place in my heart. And, shhh…don’t, tell, they’re kinda my favorite! The hugs and pure, unconditional love that fills their hearts is contagious. There will be challenges unique to Jane, but parenthood is full of them anyways! Love that sweet, precious baby and know that you have indeed been very blessed.
Hi! I have followed your blog for some time now and was just going through my inbox doing some clearing out and ran across this email again. I wondered if you could do an update in Baby Jane? She looks so much like an adorable little baby doll in these pictures. Their story touched my heart as I’ve always had a huge soft spot for children with downs. Thanks for all the work you do with your blog and the encouragement that you provide through it. I’ve prayed for your family any times and am thankful for the ministry that you have and the way that you are able to touch so many lives. And I do remember a post, although I don’t remember when it was, about how fall is your favorite season and the fact that you love leaves but don’t get to see them change colors in Florida. If you would be okay with it, I would love to send you guys some leaves from Tennessee as they start to fall. Fall is my favorite season as well and there’s nothing like seeing the trees change colors and then cleaning up their messes and playing in them or tracing them and doing crafts. (Spray painting pine cones silver for the Christmas holidays was a wonderful experience with my girls and they’re still on display in the living room during all seasons!) Sorry for the length of the email but if you don’t mind I’d love to do that for you and your family. If there’s a church address you can provide where I can ship them rather than a home address? Thanks again for all you do! Some days your emails have lifted my spirits tremendously and brought some needed conviction on others. Just be encouraged and know that you are enough and that there are large numbers of people that are silently praying for you and appreciate you.
Leigh Ann Summerville
Sent from my iPad
Happy Home Fairy
Oh my goodness, Leigh Ann! How precious are you?!?! I want you to know that Baby Jane is doing GREAT! She had some heart surgery earlier this year and came out victorious! One of my greatest joys this year is that I get to teach Baby Jane’s older brother in my 2-year-old class. This family is such an inspiration to me and I am blessed to be in their world a little bit more now. Thank you for your faithfulness to pray for them and for my own family… And to think about my love of fall and leaves! You are so sweet! I wish we could hang out! 🙂 Thank you for your encouragement – your words came at just the right time. I am so grateful for you.