Our Streak Comes to an End…

January 21, 2016. That was the last time there was a surgery in our family. Over 3 years ago. 2017 was the first year since we started having kids in 2013 that no one had a surgery. Most Mom’s never have to make statements like that, it never even crosses their minds to count the years and days between surgeries or procedures or doctor appointments, but those of us with health affected kiddos do. We know to take the little victories and learn to celebrate them, never taking them for granted.

Yesterday we learned that our surgery free streak will come to an end this year. Our cleft cutie, Nora, had a mid-year Cleft Care Team checkup. Overall the appointment was filled with good news. She passed her hearing test with flying colors and she is growing normally. Then came the moment when the doctor told us that the surgery we thought was one more year out, needed to be scheduled this fall instead. They will be doing a tip rhinoplasty which will lengthen her columella (the skin that is between your nostrils) and lift her nose to make her nasal holes larger, helping her to be able to clear her nose more easily. To be clear, this surgery, like all the other ones our kids have endured, is not a bad thing. It is a great thing and will help improve her breathing, but it will also change the smile that we have come to love.

The news hit us a lot harder than we expected. For me it was a combination of not being prepared for the news and maybe a little PTSD (post-traumatic stress disorder). Nora’s first two surgeries went great, but the recovery was terrible for her and as a new mom of 2, I really struggled with guilt and fear for my daughter. I will NEVER forget the first night we came home after Nora’s lip repair. She slept through the night without making a peep. I kept checking on her in the night but just figured she was exhausted from the stressful night in the hospital. The next morning, I went into her room to wake her up (which I never had to do because she LOVED food) to find her white as a ghost. My heart literally stopped in my chest and then I sprung into action calling her doctor to get her readmitted. I knew with every fiber of my being that something was wrong.

At the time we were at a Children’s hospital system that didn’t have an ER and it was a Saturday morning. I had to BEG for them to let me readmit her and they ended up letting me in a back door to do so. She was very dehydrated and after holding my screaming daughter to my chest while they poked her over 20 times to get an IV back in, I was traumatized! Nora’s second surgery went better but only because I refused to leave the hospital until she would consistently eat!

As many of you saw from my post on either Facebook or Instagram, I really struggled yesterday. I always knew the facts of Nora’s health journey. I can give you the non-emotional version in 5 minutes flat, but yesterday I let myself lean into the emotional part of the journey. I let myself grieve (again) for the simple childhood that Nora will lose. I cried when I thought about how to tell her she would need surgery and the enviable questions that she will have; questions that I will not have answers for. I cried thinking that this time she will be able to tell me about her pain and that she will know and feel fear. I cried when I looked at her perfect little smile, that lights up her WHOLE face and how it will change again after this surgery. I cried thinking about the new scars she will have.  And then I cried for myself, because being a Mom to a little girl who will need multiple surgeries is hard. Not being able to take her pain away or fix it, is hard. Letting go and trusting that God will provided again, is hard.

Last night as I was mindless scrolling though Instagram, I came across a verse that our church had posted,

“Trust in the Lord with all your Heart, and lean not on your own understanding; In all our ways acknowledge him, and he will direct your paths.”

Proverbs 3:5-6

I have read that verse hundreds of times but last night it was a smoothing reminder of his faithfulness. I will never understand why he allowed both of my girls to be born anything but flawless, but I also know that I have no reason to doubt God’s goodness. I know that he will provide for us, and I know that at my weakest moments, he will pick me up and carry me through. I want both of my girls to understand, that no matter the journey, God will be there with them, even when I can’t be.

The girls and I at my birthday dinner last week – bring on the carbs! 🙂

As a Mom, I will do my best to teach them strength, courage and grace; but I also know that the best way to teach them those things is by setting the example. Please pray for my family as we process this next step. Pray that he will give the words to explain all of this to her in the coming months and pray that he will lead our paths, helping us to set a good example for both of them.  Thank you and God Bless!

About Last Night…

Yesterday was the 6 year anniversary of the day that Stella busted out of the NICU! In honor of this special day, each year our family hosts dinner at the Ronald McDonald House located in the Children’s Hospital that cared for Stella. Check out my Instagram highlights to see all of our photos from the last 6 years.

During our 87 day NICU stay, we were so thankful  for the Ronald McDonald House. We were able to stay in one of the Ronald McDonald House (RMH) rooms for the first 3 weeks of Stella’s life, literally just a hallway away from her NICU room. Even after we moved back home, the RMH was a place to go to escape the dark windowless NICU room and they provided a meal for anyone with family in the hospital each night. It was a huge blessing to be able to get a free home cooked meal every night.

Every year we do this, I am amazed at how fast the memories come back and with so much strength. I can clearly remember the day that Stella was released from the NICU. The doctor came into our room on rounds and said, “So what do you think? Do you want to take her home today?!” I can still feel the face splitting smile I gave her in response. I remember calling my Mom to tell her the good news, we both cried. This day that we had been dreaming about was FINALLY here!

The nurses went through the “Going Home Checklist” with us and we checked off each step throughout the day. We got all our prescriptions and equipment lessons (she went home on a feeding tube). We packed up all the gear we had accumulated over the past 3 months and Stella passed her car seat test. We said goodbye to all our nurses and doctors. Then we slowly and excitedly wheeled her stroller out to the car.

As we buckled her in, we kept saying, “I can’t believe this is really happening!” Mike drove the speed limit or under the whole way home and I sat in the backseat next to our daughter. That night we introduced Stella to our dog Jozee and ate pizza on the floor as we watched her sleep in her Boppy. It was undoubtedly one of the best days of my life.

Last night our family made tacos and when we started serving the meal, I was set-up as the welcomer. I watched as each parent and family member came up to get their dinner and the look in their eyes. All of them looked exhausted and stressed, some eyes sparkled with hope from their child’s good day, other eyes were shadowed with worry and heartbreak due to a complication no saw coming. Each one of them brought back a memory from those long 87 days. I watched a small family get their food and sit down at a table to rehash the day, the status of their child, something the doctors told them, some new story they read online; and I was reminded of all the nights that our family would come to see Stella after work. We would bring them to the RMH to get dinner and give them an update. Some days were happy, uplifting updates and some days were filled soul crushing news.

When we had finished serving the meal and started to clean up, one of the Mothers came over and asked about Stella’s story. I happily shared our story of success and then asked about her child. She began to explain that their son was born with a heart defect that had spiraled into many other things. That he is now 11 years old, he isn’t able to speak, is just learning to crawl and that as much as he wants to eat orally, his body is just not able to process the action of it. My heart broke and my mind searched for anything I could say that would bring her comfort and hope. But it ended up that she was the one that brought inspiration and hope to me. She shared that while it’s so hard, and not what they envisioned his life would be, that he is a loving and special boy that he had taught her to be generous and to focus on what’s really important in life. Then she gave me advice about how to prepare and handle Nora’s upcoming surgeries in the years to come. As we finished talking, she got up and gave me a hug, we both teared up, said thank you and i awkwardly went back to cleaning.

As I was driving home with my Mom last night, we were telling each other about all the people we had met and the stories that we overheard. We talked about how thankful we were to have the outcome we did and then reminisced on all the stress and drama of those days. I am so thankful to be passed that point in my life, but it has made me who I am today and for that I will always be grateful. It has also given me a huge heart for other Mom’s with health affected kiddos and it’s was in that spirit that Mike and I decided to celebrate Stella’s homecoming by serving at RMH each year. We wanted our story to be one of hope on the days when you just need SOME good news.

This weekend I hope you all get a chance to be with family, to get outside (if you are from the Twin Cities, it’s FINALLY going to be nice out!) and to take a moment to look at back your own big life changing moments. Recognize how far you have come since that day and celebrate all that you’ve endured. You are STRONG, but you are even stronger through Jesus Christ – so take a moment to say a honest, grateful prayer as well; and have a great holiday weekend!

 

 

Happy Mother’s Day

Today is the 6th Anniversary of my first Mother’s Day (literally to the exact date). My first Mother’s Day was spent in the NICU with our oldest daughter Stella. We had already been in the NICU for 10 weeks and I was REALLY hoping that we’d be able to spend the momentous occasion at home instead of in the hospital. But Stella had her own agenda so instead we celebrated the day by inviting family into meet Stella for the first time.

I remember the excitement and fear of introducing her to others. The NICU makes you a little paranoid and very over protective! I also remember thinking and dreaming about all the things I couldn’t wait to do with my daughter when we finally escaped and were able to bring her home. Walks in the park, trips to our family cabin, swimming and all the clothes she would FINALLY get to wear!

I would like to think that 6 years later, I am much wiser now and maybe in some ways I am, but honestly, the lessons I learned in those first 3 months of motherhood are the lessons I try to carry with me every single day.  Here are 5 lessons that I draw on often:

1. Motherhood isn’t meant to be done alone. Whether it’s your spouse, your best friend, your family, a co-worker or all the above, you need someone that will have your back through this Motherhood journey. The day your little one arrives, everything shifts to focus on them, but you are still you as well. I know for me, I needed someone who I could still be “Jamie” with, not Mom, not Stella’s advocate, not NICU parent, just Jamie. In those early days, my best friend was the one I called when I just needed a break and to remember that there was still life happening outside the NICU.
2. It’s okay to ask for help. I learned early that I did not have all the answers and that I needed people to help me find them. I have called on my people easily over 1,000 times in the last 6 years and I am so grateful for their help, support and wisdom. Even when they didn’t have the answers I needed, they were always there to listen,  vent with me, cry with me and to let me know I was not alone. As women, we tend to brave our way through the hard parts of life, but it’s so important to have people you trust to give you the advice you need and who you can tell your secrets to.
3. It could always be worse. We are all allowed a pity party now and then, but I encourage you look around truly see the blessings you have been given. Living in a NICU for 3 months, we saw the best and the worst. The room directly across from ours was a like a hotel space, anyone who came in there was discharged within 3 days. As someone who still had months to go, it was hard to see these families happily go home time and time again. However in the room next that one, lived a little boy who had already spent over 8 months in the NICU and on Easter weekend, he went home to be with his creator instead of his parents. It was a wake up call for us to be thankful for all the blessing he was giving us, because very easily Stella could have never come home – she was born with only a 50% chance of survival after all.
4. Even on the worst days, God is near and listening. There were many days that my prayers sounded more like yelling, but even on those days he listened and responded. He ALWAYS provided for my family, often not in the way I expected, but looking back we always had what we needed. Today, our problems are pretty minor compared to those life and death days of the NICU, but the challenges can be just as draining. In those moments of frustration I TRY to pause and remember that he has not failed us yet and that even in these new challenges, he has earned my trust.
5. The little moments matter… A lot! During our 87 days in the NICU we consistently talked about all the things we couldn’t wait to do with our daughter when we got out. They were all so simple, like show her the sunshine, wake up in the same house, go for a walk around our neighborhood and introduce her to our dog Jozee. To this day, we try to experience life in moments and not things. We save and spend our money differently now and we work really hard to create experiences with our daughters. It’s probably the greatest lesson that we learned during our time in the NICU.

Today I was blessed to have been woken up by my daughters in our family home. I was blessed to have breakfast with them, watch them run and play in the sunshine. I was blessed to spend time with our family and end the night with a walk around our neighborhood. All my Mother’s Day wishes from 6 years ago came true today and I am SO thankful! God is SO good!

Whether you are pregnant or still trying to be pregnant. Whether your kids are adopted, fostered, step-children or your own. Whether your kiddos are babies or adults. Whether your children are near or far. Whether you are celebrating from a NICU, hospital, home or anywhere else. I hope you have/had a blessed day and you feel God’s presence with you today and always. Happy Mother’s Day to you all!

I am worthy.

This week was one of the busiest work weeks I have had in a while. It meant early mornings, back-to-back meetings, wrapped up with dinner meetings and long drives home. So naturally both of my kids caught some kind of virus and were home sick most of the week. [insert face palm here].

Nora caught it first, her temp spiked Sunday night which meant that I had to cancel and move her Cleft Care Team appointment to June. It was a bummer but it was also a relief because I felt like God was taking one thing off my plate for the week. That is until Stella got off the bus Monday afternoon complaining of a headache, which sure enough led to a fever for her as well.

I am SO thankful for my Mom who is retired, lives nearby and was willing to take care of my sick kiddos for a few days this week but even with that help, we still had middle of night fever checks which led to medicine distribution and LOTS of prayers that Mike and I wouldn’t get whatever this was.  By Wednesday evening, Nora was feeling much better and we were starting to see the light at the end of the tunnel, only for my Mom to text with an update Thursday evening that Nora (who had been temp free for over 24 hours) was reading a 102 temp again.

I lost it! I was driving in my car to pick them and my anger shot through the roof. I’m pretty sure steam was coming from my ears. I called my husband, spoke way to harshly at him, hung up and started to cry. I was exhausted and it was time to call in reinforcements. I exhaled a breathless prayer,

“Lord, help! I’m so tired and I was feeling so hopeful that things were coming to an end this week and now I feel like I’ve lost all control again.  Lord, I know my anger is because I’m exhausted and heart broken. Please give me the strength I need to get through tonight and more importantly to be the Mother they need me to be right now.”

I would like to tell you that a miracle happened, a bright light shined down and healed my kids but actually Stella’s fever spiked again too. However, he did help me keep my anger, frustration and exhaustion in check, he did help me approach the situation with understanding and love – which is tough to do with a whiny, over-dramatic 6 year old (maybe he did give me a miracle).

It turned out that both kid’s fevers were due to exhaustion (apparently it’s contagious) and with one round of Tylenol they were feeling better and were able to go to school and daycare on Friday. In fact we did the bad parenting thing and even let Stella perform in her Kindergarten Spring Concert on that night – it was totally worth it! I’ll post a photo on my Instagram page.

It wasn’t until I had caught up on sleep a few days later and had some quiet time that I stopped to ask myself why it took 4 days and full on rage to break me enough to ask God for help. Why not on day one? Why not the days before the fevers even began but I knew my work week would be busy? Why do I have to break before I call on Jesus for help?

Psalms 89:8 says, “Who is like you, Lord, God Almighty? You, Lord, are mighty, and your faithfulness surrounds you.” I could tell you of at least 15 times in the last 6 months when he has shown his overwhelming faithfulness to me; and yet I wait until I can’t carry anymore to call out to him. Why? Maybe it’s my Type A, need for control. Or maybe it’s just laziness. Or maybe it’s because I feel like my little first world problems are not big enough to bring to our Almighty God.

In Luke 12:6-7, Jesus says, ” Are not five sparrows sold for two pennies? Yet not one of them is forgotten by God. Indeed, the very hairs of your head are all numbered. Don’t be afraid; you are worth more than many sparrows.”

I don’t know about you, but this verse literally brings tears to my tired Mama eyes. As a parent, I know deep down this verse is true. That my Father, is looking down on me in love, waiting for me to ask him for help. Waiting for me to include him in my day. Waiting for me to share my life, my worries and my successes with him – just like I want my own children to do everyday.

I have been the kid who gets picked up from school or daycare, and when their parents asks what they did today, says, “nothing’.  This week, my goal is to stop being so hard on myself and to bring God, my LOVING Father, all of my fears, doubts and excitements. To start my day in prayer instead of just at night or in moments of panic. It is great o end your day with thankfulness but let’s begin it with God’s grace as well. Personally I think it’s “self-care” at it’s finest.

Hope you all have a great week. Follow me on Instagram or Facebook to stay in touch during the week – I try to share updates and funny stories throughout week there.

God Bless!

I’m Back!

Hello Friends – I’m back!

I wanted to take a moment to explain where I went and why I “ghosted”.  Almost two years ago I felt God calling me to start a blog as a way to share my unique motherhood story.  The only problem was that as soon as I heard “blog”, I stopped listening and started interrupting. If you know me personally, you know that I do that a lot (chalk it up to being Type A). I started telling God about all my great ideas and in the process, I silenced him.

Eventually I stopped hearing God in my blog posts, so I stopped. I thought maybe I had heard him wrong, maybe he didn’t mean for me to blog. I felt like I had failed.

A year went by and God’s voice was still as silent as my blog. It took quite awhile for me to realize that I was still talking at him and not with him. A good friend of mine encouraged me to stop and sit in silence with a truly open heart and mind. At first I felt silly and struggled to keep my mind from wandering, but soon I could feel him with me again. I started to apologize for being so prideful, and this time I asked him to lead me. I never thought he would tell me to start my blog again. NEVER! I had written that off as a failure; but soon I was filling a notebook with words for a blog post.

When I look back at my past blog posts, I see someone trying really hard to show people she knew how to be joyful in middle of a struggle, which was true some days, but definitely not most. Plus my struggle is not over yet, it may look different now but having a child that is health affected (let alone two children) is a hard. Being a mom is hard!

So let’s start over.

My name is Jamie, I am turning 32 next month and I have two little girls, each born with a different birth defect. If you are new here, check out my past blogs and the pages on my girls – it’ll give you their story. I am a true girly girl who LOVES fashion, shoes, hair and make-up. My day job is doing Global Community Engagement for a large Medtech company. I really enjoy getting to engage our employees in their local communities and getting to fund programs that I know will make a big difference to people’s health all around the world.

On a personal level, it is no coincidence that the name of my blog is “Becoming Joyful Mama” (a name he whispered to me in the early stages of my blog) because after all we’ve been through, all the miracles, the blessings, the grace… I still struggle everyday to choose to be a joyful mama.

I know how blessed we are, how special these girls are and trust me I am SO thankful, but I still yell way more than I should, some days I still get irritated at the smallest things  and I still daydream of a vacation all by myself! I am a normal Mom with all the normal struggles. BUT I feel called to be better, for my girls, my husband and for myself. I want to go to bed most nights feeling good about my Mom skills that day, not with a long list of regrets that I am asking forgiveness for. I also want to be true to myself, the woman that I know God created me to be.

In the next couple of weeks, I will share an update on my girls, an introduction to who I am and some the things that inspire me. I will also be starting a Instagram page called @becomingjoyfulmama so that you can introduce yourself to me as well. My goal for this blog and Instagram page is to create a space where we can support each other through our struggles, celebrate our triumphs and work together to become joyful mamas.

One last thing, I have a prayer request. Nora has a doctor appointment tomorrow with her Cleft Care team. It is her mid-year check up with this team. I’m not concerned with anything but if there is one thing I have learned, prayer is always necessary! I’ll post an update on my Instagram page and here next week.

God bless!

Hope at Christmas…

I hope I never forget the Christmas that I was pregnant with our first daughter Stella. A few months before we had found out that she only had a 50% chance of survival and in November we had met with the doctors who would be caring for her after she was born. Needless to say, that Christmas we were filled with both grief, for what was coming and hope, that the following Christmas our daughter would be home with us.

It is my tradition to put my Christmas tree up the day after Thanksgiving (we have a fake tree) but that year Mike had to work so he brought the Christmas tree, lights and ornaments up from storage before he left. I put on Christmas music and started working on shaping my tree.

I was 7 months pregnant at this point and due to an extra 2 and ½ pounds of amniotic fluid (a result of Stella’s condition) I was quite large and my belly kept knocking the tree out of the stand. I kept plugging away wrapping lights on each and every branch, fixing the tree every time it tipped in one direction or another and singing Christmas songs to myself and our dog, Jozee.

A few frustrating hours later I plugged in the last strand of lights and stepped back to look at my completed tree. The colorful lights flashed on and then 10 seconds later the entire middle section of the tree went out. I started to cry.

Then an old, over played Christmas song about baby Jesus and the role he would play on this earth came on the radio – Mary Did You Know.

I remember sitting down and just crying, not just over my tree lights but also because the gravity of Stella’s situation was hitting me. I remember crying to God about how I didn’t want my baby girl to have a tube down her throat, surgery or scars. I remember crying about having to hand my little girl over to strangers to take care of her, to save her. And then I realized that God too had to hand his little baby off to strangers to take care of him. He had to trust Mary and Joseph and this world to love and protect his son. His son too went through a horrible battle and he too has scars.

I realized so quickly that he understood, not only as God, but as a parent, as a father.

This Christmas, Mike and I are enjoying watching both of our miracles, Stella and Nora, run around and be excited about everything. They love life, their family and friends. They are such a joy to us this Christmas and every day. Every time I get overwhelmed with what Nora will have to go through, I think about that Christmas and the lesson that I learned. I think about how hopeless I felt and then I look at Stella and I remember that God has never left us and he will continue to guide us through this life.

This is my command – be strong and courageous! Do not be afraid or discouraged. For the Lord your God is with you wherever you go. – Joshua 1:9

My girls may not be perfect – they both have scars – but it is my job to teach them to be proud of those scars, that those scars represent the miracle that they are. When Jesus appears to his disciples after his death on the cross, he always shows them his scars as proof of who he is. To remind them that he not only died for them and but by God’s grace, he came back to life. His scars are as much a symbol of what he did for us as the cross is. My girl’s scars are a reminder to me of our journey as a family. They are my symbol that we survived and they remind me of times in my life when Jesus carried me home.

Merry Christmas to each and every one of you. May your season be blessed and may you see God’s grace shining in your own children.

To listen to Somewhere in Your Silent Night by Casting Crowns – Click here!

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.
  • 
  • 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.

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.

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)

To listen to Safe in My Father’s Arms click here.

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.

To Listen to My Story by Big Daddy Weave click here.

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”

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. 🙂

To 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.

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.

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