It Could Always Be Worse…

Shortly after we received the news about Stella at our 20 week ultrasound, they scheduled an appointment for us to meet with a Neonatologist that would be part of the team caring for Stella after she was born. The doctor talked to us about what to expect on delivery day and in the weeks after her birth. I remember feeling overwhelmed by all the information and the weight of what was coming. Many times during that meeting she told us that Stella had a 50% chance of survival. This doctor was doing her best to make Stella’s diagnosis a reality for us.

Finally I asked the question I was dying to get an answer to, how long would she be in the hospital.

“I would say at least 6-8 weeks, but sometime longer. It just depends on her lung development and how she does after she arrives….” said the doctor.

Mike and I were both in the room and were told the same statement; however we both interpreted it differently. I pride myself in being a “glass half full” type of person, so I heard “6 weeks”. Mike prides himself on being a “realist” so he heard, “AT LEAST 6 to 8 weeks, PROBABLY MORE”. For the next couple of months we would have conversations with people leading up to her birth and they would ask, “How long will she be in the hospital?” and we would both fight to get our answer out first. I would get frustrated at Mike for not staying positive.

“Why you can’t think positively, we are praying for only 6 weeks,” I would say to him.

“I am being positive, but I am also being realistic, she said AT LEAST 6-8 weeks and most of the babies’ stories we’ve read spent much more time than that in the NICU,” he would point out. This is typically when I would tune out because I was in denial! Haha!

Fast forward to Stella’s 6 week birthday. It was Good Friday and God delivered a Good Friday miracle. That day they removed Stella’s breathing tube.  For the first time we were able to see her whole face without any tape or tubes in her mouth and we were able to hear her cry for the first time, as the breathing tube never allowed her to make a sound. It was a wonderful day and a huge milestone for all of us.

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The next day the doctor made his rounds and I asked again, “So how much longer do you think we have until we can take her home?”  He looked at my hopeful face and gave me a look of sympathy.

“I would say you have at least another 6 weeks until she will be able to go home. She needs to ….”

I stopped listening after that. I was instantly feeling all my emotions at once. I was heartbroken and then mad. I remember walking down the hall shortly after he left to have a quick conversation with God.

I remember crying and pleading to God, “Lord, I can’t do another 6 weeks. I only have 12 weeks of maternity leave and that would be my whole leave. I wouldn’t get any time at home with her or worse, I would have to go back to work while she is still in the hospital.”

Then I remember a soft, firm voice fill my mind and heart, “Yes you can Jamie, and you will. And I will be here with you the whole time.” I begrudgingly accepted this through tears and went back to our dark, windowless NICU room.

For I am the Lord your God who takes hold of your right hand and says to you, Do not fear; I will help you. – Isaiah 41:13

 About an hour later, our favorite nurse was in the room with us, trying to cheer us up, when alarms started going off for the baby across the hall. She took off for his room which was soon filled with hospital staff – nurses, doctors and lots of equipment. From our room I could see our nurse giving CPR to the little boy, who was only a few months older than Stella.

I could see his Mom standing in the hallway, having only left his room for a couple of minutes to get some lunch. She was hunched over in sobs while another nurse slowly rubbed her back.

My heart broke and the thought, “see it could always be worse” filled my head. Suddenly I was thankful for 6 more weeks.

Now let me be clear, I don’t say, “It could always be worse” as a way to look down on others. In fact, to many people I am their “worse”; many of my friends felt nervous going to their own 20 week ultrasound appointments, fearing what happened to me would happen to them. “Sure my child may not sleep well but at least they didn’t spend 3 months in a NICU…”

Instead, when I have an “it could always be worse” moment, I use it to stop and reflect on the good in my own life. Many times throughout my journey with my girls, I have gotten wrapped up in the way I think it should be or the way I think it should go.

I always tell people to pray for the miracle but don’t be surprised when it doesn’t look the way YOU planned or expected. YOU are not God and YOU can’t see or understand all the things he can.  However when I think back to the way I thought things should go, I realize that I would have missed out on seeing all the miracles he performed or the way a little infant could change so many lives. I would have missed the way she changed our own life. I’ve had to stop and trust that God has a bigger purpose for me and for my girls; and let’s face it, his plans usually work out better than mine anyway.

The following day was Easter Sunday. I was distracted by our news the day before and sad that I didn’t have our new born baby home with us for Easter. I kept thinking about the little dress I had bought for Stella all the months ago before I found out she had anything wrong. It would never be worn. It was odd to go to a family event with the biggest part of my life missing.

That afternoon we brought my parents back to the NICU with us so that they could hold Stella for the very first time. Now that she wasn’t intubated, they could hold and snuggle her more easily. I remember my Dad slowly rocking our sleeping baby girl when I turned around to look out the window of our room into the hall. Across the hall from us the same Mom we watched the day before walked into her little boy’s room with his Dad and siblings. A little while later we watched a priest go into the room and then a doctor.

Our nurse turned to me and said, “They are taking him off life support today.”

My heart broke and soon everyone in our room was crying too. It’s amazing how only a hallway a part, the world could be so different. Once again, I was reminded of how blessed we were. We all held hands and said a prayer for the baby boy and his family, then we all held Stella a little tighter and gave her a few extra kisses.

When our kids get sick AGAIN, or the medicine didn’t work or they want to try one more surgery, we get so mad that God isn’t doing this our way and soon we feel defeated. It becomes really easy to focus on all the things that aren’t working or what we’re missing out on. But I have found that those are usually the moments that God chooses to show me how good I really have it. Time and time again he has shown me that it could always be worse.

So today I encourage all of you to make your grateful list – what are the things that are going well right now? When you look back a couple of years, months, weeks, or even days – what are the things  you’re grateful you are past or that have gotten better? I bet the list is longer than you think. Next I encourage you to praise God for that list and ask him to help you see the little joys that are already in your life right now.

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Five Years Ago…

Today I am writing my first blog post on a very important anniversary.

Five years ago today, Mike and I woke up early and excitedly got ready for my 20 week ultrasound appointment. We were going to have our first baby and couldn’t wait to find out if it was a boy or a girl. We had taken the whole day off work so that we could go to our appointment, celebrate at breakfast, do some shopping, tell our friends and family and just enjoy the momentous event.

Five years ago today, we excitedly watched the ultrasound screen, oohing and aweing over the little hands and feet. We shared an excited smile when they told us it was girl. I teared up thinking about what my life with a daughter would be like. Dresses, hair, make-up and shopping… it was going to be the BEST!

Five years ago today, our doctor sat down with us and told us they were having a hard time seeing our daughter’s chest and were sending us to a specialist that afternoon. She never led on that something might be wrong, so we went to breakfast and discussed names, stopped at Carter’s to buy a cute little newborn dress, shared our news with family and friends, then went to our next ultrasound appointment.

Five years ago today, we walked in to the specialist office and again waited to see our baby on the ultrasound. I remember feeling like I had won the lottery because I was going to see her twice in one day. We smiled and laughed at all the images on the screen, the clarity was much better with this high-tech ultrasound. As the ultrasound tech was wrapping up, Mike said to her, “Everything looks okay, right?”

Five years ago today, our whole world stopped and when it started again, it felt like everything I had hoped, dreamed and wanted for my life had burned to the ground.  Later that day, I wrote this email to our family and friends:

At 12:30 today we went for a second ultrasound and found out that there are complications with my pregnancy. Right now the baby’s stomach and small intestines are in her chest, next to her heart which is pushing her heart to the right side of the chest instead of the left where the heart should be. They have diagnosed it as a Diaphragmatic Hernia. This means that at the very least the baby will need surgery to repair the hole in the diaphragm and to move the stomach and small intestines back to the abdomen. However in the ultrasound they were not able to see the liver, which means that if it is in the chest as well or eventually moves up to the chest, there will be no space for our baby’s lungs to develop, which there is no fix for and would not allow our baby to survive.

We are asking for prayers that the next ultrasound (in 4 weeks) will show no additional organ movement to the chest.  If this happens and the liver stays in the abdomen the rest of the pregnancy there’s a 50% chance the baby will make it and live a normal life.  We went from having a very exciting morning to being blindsided by this news. We appreciate your prayers and our privacy as we work through next steps and we will keep you updated.  

With Love –

Mike and Jamie

I know many of you have stories just like this one. Whether it’s news of a sick kid, a parent’s death or illness, a fire, a job loss or even your own health – you never forget the moment when your realize how little control you have in this life, it’s the moment that changes your life forever. I grew up being told that God was in control but I never spent too much time thinking about what that actually meant.  That if God was in control, that meant that I was not. For the first time in my life, there was nothing I could do, eat or drink that would heal my daughter. Nothing I could do on my own to change the outcome. As a self-proclaimed “control-freak”, this was terrifying!

Later that night, my parents came over to see how we were doing and to get a much needed hug. After talking for a while, the four of us (and our cocker spaniel, Jozee) sat in a circle and prayed. We prayed for a miracle, we prayed for strength, we prayed for courage and that he would hold us in his arms and carry us through this. That was the moment that Mike and I truly became parents. That day God showed us our limited ability to control this world, but he also showed us that he could. In that moment, we gave the fate of our daughter over to him, hoping and believing that he wouldn’t let us down.

God gave us so many miracles during coming months, many that I can’t wait to share with you; but one of the biggest miracles he gave us was the unexpected joy that came out of our journey. While it felt like my whole world was burned to the ground five years ago, today I am happy to report that a new and beautiful world grew from those ashes.

… to bestow on them a crown of beauty instead of ashes, the oil of joy instead of mourning, and a garment of praise instead of a spirit of despair – Isaiah 31:3

Our daughter Stella was born in February, 2013. She spent her first 16 days on ECMO, had her hernia repaired at 14 days old, was extubated at 6 weeks old and after 87 total days in the hospital, came home with only a feeding tube. Along the way, God allowed us to tell our story to over 1,000 people, from all over the world, through CaringBridge and we knew that all of them were praying along with us. We watched our little Stella change the lives of our friends and family members, many of whom started to pray or attend church for the first time in a long time.

So don’t give up hope, continue to pray and find peace in the fact that God is in control. I know first hand that for some people it is not comforting to give up control, especially over something that is so precious to you. So I encourage you learn about who God really is and the promises that he made us. I promise that someday, you will look back and see that he deserves your trust and that he carried you the whole way. 🙂

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