Big Girl Nora…

As some of you may have seen on my Facebook page, last week Nora had a Cleft Care Team appointment. After a lot of prayer and consideration we decided to switch Nora’s cleft care over from Gillette Children’s Hospital to Children’s MN. We are grateful for the care she received at Gillette but we are now focused on a long-term strategy and felt that this was a good time to make the change. Last week we were on boarded at Children’s with a 5 hour appointment. Nora was evaluated by speech, dental, audiology, and pretty much every surgeon who will work with her in the coming years. Overall it was a great experience and we were impressed with how well this team of doctors collaborates.  Here is what we learned:

  • Speech: We were excited to learn that Nora’s speech is on track that of the average 2 ½ year old, which is impressive for a cleft kiddo. At this time they don’t expect her to need a speech surgery, but we will continue to evaluate her progress every 6 months to be sure.
  • Audiology: Nora passed her hearing test in both ears, however they looked and found that the ear tubes that were placed at 4 months old have dislodged but have not fallen out yet. Most ear tubes will work their way without intervention, so at this time we will just wait and see. They also noticed that one of her ear drums has a small hole. They assume it will close up on its own, but will check it next time we are in.
  • Dental: It’s time to get Nora enrolled in a pediatric dental program. (I know, I know, she is almost 3 and we have never been to the dentist, shame on Mom.) Her teeth look good for now but could use a good cleaning. And since she will have a lot of dental work needed over time, it’s will be good to get her used to it. We learned that she is missing 2 baby teeth on top but it is common for cleft kids to be missing teeth so we will just have to wait and see what is there for adult teeth in a few years.
  • Surgeons: All in one room we had the plastic surgeon, ENT, Orthodontist, Oral Surgeon and Restorative Dentistry (they would implant teeth if any are needed). It was a full room and at naptime, so Nora was a tired little girl, but also very corporative. J They walked us through the next couple of surgeries they believe are needed:
    • Columella Lengthing – Nora’s columella (the skin between your nostril holes) is pretty small, which means that her nose holes are pretty small, which means it’s hard for her to clear snot and boogers from her nose. Most of the time this isn’t a problem, but when she gets sick or the weather changes (specifically during the winter) we notice it more. Her nose will continue to fall lower as she grows so this means that her next surgery will take place in the next 1-2 years to lengthen her columella and lift her nose a bit higher. They prefer to have this done before she goes to Kindergarten.
    • BilateralBoneGraft
    • Bone Graft – This is the next really big surgery. Right now, her upper jaw is in 3 parts. The center part that was out of her mouth at birth and her left and right jaw line. The bone graft will complete her jawline and allow her teeth to grow in “properly”. They will start to prep for this surgery when her 6 year old molars come in by putting expanders on her upper jaw to create space and to align the 3 parts of her mouth into a U shape. Once this is complete, they will go in and do the bone graft, which they expect to do at 7-8 years of age.  The bone for her jaw will be taken from her hip.  The really cool part is that after about 4-6 months the bones will have fused together and will be one complete bone/jawline.

We left the appointment feeling relieved that we now have a plan in place. I am so thankful that her speech sounds good at this point, I am relieved that she passed her hearing test and I appreciate the great team at Children’s who are already collaborating so that Nora’s next surgeries will be successful.

I was looking back a pictures of Nora the other day and I was amazed at far she has come. Like most Moms of cleft kids, I worried about what she would look like and how everyone would react to her. But the moment they placed her on my chest after she was born, I instantly fell in love with her. Everything in me wanted to hold and protect her from the world and she knew she was safe in my arms.

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The next 4 months were filled with doctor appointments and retainer changes, but she quickly became the center point of our family, changing everything about us: Stella was now a big sister and seemed way bigger now that Nora had arrived. Mike and I were learning what it was really like to bring an INFANT home (since Stella didn’t come until she was 3 months old) and even the our dog, Jozee, had to learn to share her favorite couch spot with Nora and I.  By the time we had gotten through her first two surgeries (her first lip and palate repair), Nora’s cleft was just part of who she was and we rarely even notice it anymore.

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Today, I watch Nora and am amazed at the beautiful little girl she has become. She is so silly, always looking for ways to make us laugh, but also extremely sweet, learning to share much better than her sister does and always the first to give us snuggles. While we know that her defect is more of a marathon than a sprint, we are already so proud of her progress and of the “Big Girl” she growing up to be. 🙂

Be joyful in hope, patient in affliction, faithful in prayer. – Romans 12:12 (Nora’s Life verse)

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Stella in her own time…

There is a book that someone bought Stella when she was an infant, it’s called “Ruby in Her Own Time” and it is one of my favorites. It’s about a little duck family who has 4 healthy ducklings and then Ruby, a little duck that is born later and is smaller than her siblings. Throughout the book Ruby’s siblings learn to eat, swim and fly before she does, and the Father duck keeps asking if she will ever catch up, to which the wise Mother duck always replies, “She will, in her own time”. I originally loved this story because it reminded me of Stella.

Stella didn’t breath, eat, come home or do anything developmentally like the other kids her age.  She was always doing everything in her own time. Every time I tried to rush her along, our favorite nurse would say, “She’ll do it when she is ready,” we used to call it “Stella Timing”.

I remember when she was finally extubated from her breathing tube and we could finally work on oral feedings, it was one of the final achievements we needed to make before taking her home. I thought, “This will be a breeze, we will be out of here in no time.” WRONG! We learned quickly that our daughter had a stubborn streak. Now to be fair, she had a breathing tube down her throat from the moment she was born until she was 6 weeks old. We were told that she missed her window to practice her “suck-swallow-breathe” instinct that most full-term babies are born with. You would literally put the bottle in her mouth and she would look at you like, “What do you want me to do with this?” Also, because her insides were all switched around (her stomach was in her chest when she was born) her esophagus was twisted and stretched giving her an impressive gag reflex (which she still has).


Every day we would go to the hospital excited to work on feeding and every night we would leave exhausted, frustrated and sometimes covered in puke. During this season, Stella taught us patience. Even though she never did learned to eat orally while we were in the hospital, the time we spent working on it gave Mike and I a degree in how to set-up and work a feeding pump so that when we went home we were already familiar with bolus feeds, feeding pumps and lots of tubes! It also allowed us to wean Stella off pain medication and her need for oxygen support.  This allowed us to go home with just a feeding tube – so in the end, her timing was perfect and better for all of us.

This is exactly how God works too. Early in my pregnancy we prayed for a miracle. I had it all worked out in my mind and knew exactly how it should go. We would go in for one of our ultrasounds, the technician would look at Stella and suddenly she would stop and say, “Wow! She’s healed! Where’d the hernia go?! It’s a miracle!” The doctor would rush in to double check and would say in shock, “In all my years as a doctor I have never seen this happen before.” Great daydream right? 🙂

Instead God took his sweet time. He made us wait through the last 4 months of my pregnancy and a long 87 days afterward to heal our daughter. However when I look back now, I can see the numerous miracles that he provided us during that time. Some were big and others were small, but the thing I am most astounded by is how he used our story to tell his story. I realized later that if he would have granted me my wish and healed Stella in my womb, no one besides a few close friends, family and the doctors would know. It would be amazing for sure, but maybe the doctors would have explained it away and our life would continue as it did before.  By waiting the way he did, he allowed hundreds of people to join in on our story through our CaringBridge website, and he also gave us time to grow into the parents he created us to be. We went into our 20 week ultrasound a little bit selfish and very naïve young adults. We left the NICU humble, grateful and compassionate parents to a beautiful little girl that changed not only our world, but also everyone else that met or read about her.


At the end of the Ruby book, Ruby grows up to be bigger and stronger than her siblings, flying farther and wider than them too. She flies off into the sunset only to return home later with a family of her own.

Our health affected kiddos are so amazing, aren’t they? They are resilient. They learn from the beginning to fight hard for what they want.  Today Stella is a really smart little girl that has lots of pre-school friends and a great, big heart. Most people who meet her now have no idea that she ever had anything wrong. I am so proud of my little girl and I look forward to watching her grow up into the woman that God created her to be.

But as parents, it can be really hard to accept that things are not in our control, especially when it comes to our kids. It takes a little extra faith and a lot of endurance to get through these hard times.

For those of you still in the NICU – I get it, there is nothing simple about NICU life. The constant alarms. The strangers touching, holding and caring for your baby. The horrible feeling every night when it is time to go home and once again leave your baby behind.  The never ending pumping and freezers full of breast milk. The awkward phone calls to the NICU nurse late at night when you’re awake pumping (again) to see how your baby did with her last feeding or if she is sleeping okay.  The empty room in your house where your baby should be but isn’t.  It is a horrible experience to go through. I get it.  And so does God.

 “For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.” – Jeremiah 29:11

You are not alone and I can promise it does come to an end. And someday you will look back and celebrate all of God’s fingerprint on your life and the life of your little one. You just have to trust that God will provide in his own time.

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Giving thanks, even when we don’t want to…

When Stella was about 18 months old, I became pregnant with our second daughter, Nora. As you can imagine we were a little nervous that Nora would be born with the same congenital defect that Stella had, so I pleaded with my doctor to let me have an anatomy ultrasound at 16 weeks (instead of the usual 20 weeks). Once again we were excited to find out if it was a boy or girl, but this time we were much more concerned about the health of our new baby.

I remember telling the ultrasound tech Stella’s story and assuring her to not hide anything, just tell us if you see ANYTHING wrong! After finding out that Stella was going to have a little sister, the tech looked at the baby’s diaphragm and let us know that it was intact. We each breathed a sigh of relief but once again at the end of the appointment we asked, “Does everything look alright?”  Once again the tech looked at us with same look of sympathy and said, “It looks like her lip may not be complete, the doctor will take a look and talk to you more about it.” [Que the tears]

We met with my doctor, who delivered the news like it was no big deal, but to me, it was huge. All I kept thinking was, not again! I remember getting into my car and calling my Mom. She cheerfully answered the phone, excited to find out the gender.

“It’s a girl!” I said trying to hold my emotions together.

“Oh yay! It will be so fun having sisters! Did the doctor say everything looks healthy?” she asked me. I couldn’t get the words out. “Jamie, everything is okay right?” she asked again, this time more nervously.

“No” was all I could choke out between tears, “It looks like she has a cleft lip, they will know more when they do a level 2 ultrasound at 20 weeks”

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At 20 weeks we went back to Minnesota Perinatal Professionals, the same high risk pregnancy clinic we went to for Stella, to have our level 2 ultrasound. It showed that Nora would be born with a bilateral cleft lip and palate. I remember sitting down with one of the doctors we had seen during my pregnancy with Stella. Mike asked him how often he saw parents with two children who had different defects. “You are only the second family in my 20 year career,” he told us. We weren’t sure if we should buy a lottery ticket or just cry. He told us that while Stella’s case was crisis level 100, literally life or death, this baby was really only crisis level 10, but emotionally this baby will feel like a 100 because it is such a visual defect and because it is our second time planning for a baby with complications.

I was crushed. I prayed so diligently and specifically for a healthy baby this time, I couldn’t understand why God would allow this to happen again. Soon my grief turned into anger and that is where it stayed for the next 6 weeks.

Over the next 6 weeks I would let my anger at God spill into everything else in my life. Why again? Why us?  I had trusted him to give me a healthy baby this time. I became irritable at everyone and nothing was good enough. Mike didn’t help me enough with Stella. Stella was two and didn’t listen to me. My job was boring and I was frustrated with my boss. Literally nothing in my life brought me joy. Finally after another argument with Mike I realized everything I had been frustrated and unhappy about was a reflection of me, and that the real person I was angry at was God.

That afternoon I finally gave in to my anger, dropped to my knees and started to cry. I prayed my first honest prayer since learning about Nora’s cleft. I had been so mad at him but really I was broken hearted. It had been easier to be angry than sad or scared, but it wasn’t making me feel any better. In fact, it was preventing me from healing and moving forward.

I realized it was time to let it go, (que the Frozen theme song) but I was going to need strength I didn’t have. I asked God to help me release my anger and start to see the positives in my life. I prayed for patience, strength and wisdom. I remember taking a deep breath when I had finished praying and instantly feeling lighter.

Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. – Philippians 4:6

Next I worked on thanking God for what I did have. As I took a step back, I realized God had set me up perfectly to deal with Nora’s Cleft. I had an amazing support system already built – great family and friends, who were already praying for us. I had amazing parents who loved and trusted God and had shown me that all their lives. I had a fantastic husband who was my partner in life, who understood all that I was feeling, and was willing to hold my hand through this next phase.

We had one, now healthy, daughter who was scheduled to have her feeding tube removed before Nora was even born, providing us with just one battle at a time. We both had jobs, so we had insurance. Even more important we lived in an area that allowed Nora to get the care she needed. And since this was the second time we would have a child with a birth defect, we knew the system, the doctors, the NICU and the nurses.

By looking at all the things I had to be thankful for, God showed me all the things I had to be joyful about and that gave me the confidence to face this next battle head on. I finally had my head and heart in the right place and I knew that God would be walking along with me as he did with Stella.

We are all allowed to have a pity party from time to time. It isn’t fair that our children were born with birth defects or that they struggle with their health. It’s hard to stay joyful when you feel like are constantly putting out fires. But have you ever noticed that ungrateful people are usually miserable people? Nothing makes them happy. They’re never satisfied and it’s never good enough.  So my challenge today is to create an attitude of gratitude, giving thanks in everything, even when we don’t want to, because I believe that being thankful is going to bring us one step closer to being a joyful mama. 🙂

SongoftheBlog_10.27.17To listen to Faith to Believe click here!

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.

SongoftheBlog_10.19.17To listen to Need You Now (How Many Times) click here.

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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