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.

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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!

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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.”

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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.

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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.

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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.

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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.

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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

6 years ago today, I celebrated my first Mother’s Day from the NICU. Today I am looking back at the motherhood lessons I learned during that time.

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.

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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!

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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.

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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.

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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!