Post Traumatic Stress can happen to you

Post Traumatic Stress Disorder (PTSD), like many other disorders, has become stigmatized as something reserved for military veterans and victims of violence. It is sometimes talked about as if it is faux-paux or made up. It has become so stigmatized that even qualified professionals are afraid to acknowledge it as something much more common. But I want to lift the stigma and bring awareness to everyone that PTSD is not reserved for certain people. It can affect anyone who has experienced any form of trauma. And trauma affects everyone differently. If you have been through trauma and are struggling to move on from it, you are not alone and you are not crazy! I had a therapist who once who just said, "you aren't crazy, a lot of people feel like that", and it was a huge break through for me. So I hope these and all of my words are helpful to you, because we are not alone and you are not crazy.

After Maelyn recovered from her first surgery I was really struggling. I knew what depression was and felt like and generally how to cope, but the anxiety I was having was beyond anything I had experienced before. It was beyond my control, subconscious and I had no way to help myself. It was as if my body and mind were reacting for no reason. We were in the clear, why was I freaking out now? I was having panic attacks over mundane things. I was exhausted and irritated. But my main symptom that was out of control was nightmares. The nightmares actually started when Maelyn was diagnosed inutero but now it was every time I fell asleep. Every night one of my kids was vividly dying and I couldn't help them. How can I control my thoughts at night? I did a quick online search at one point about the types of nightmares I was having and the thing that kept coming up was PTSD. I was like, no no too extreme, so I kept researching, and the more and more I read it made total sense. The bad dreams were consistently every night. They woke me up in a panic and were difficult to get back to sleep after. It was causing me to dread going to sleep and not be able to fall asleep. Which was then making my mood even worse. I was still not convinced of myself diagnosis but I knew I needed help.

Eventually I found an amazing therapist, Jen. God definitely orchestrated our getting together because I don't think there is anyone else out there who could have so effectively walked me through that time. I wish I could have brought her with me to PA! After meeting with me two or three times, she brought up caregiver PTSD. She told me it is a thing and people don't acknowledge it as much as they should but she really affirmed all that I was going through. She also explained that for a whole year I was in fight or flight mode, being strong for my kids, and now that things were "fine" my body was struggling to readjust to the let down of hormones. So I'm not crazy, it's not just "in my head", there are actual chemical things happening in my body. And I'm not alone, other caregivers have the same/similar issues. When we are helplessly fighting day after day for those we care for, it's traumatic. When we have to witness the pain that those we are supposed to be helping and protecting go through, it is traumatic. Hard stuff = trauma. Talk therapy (with the right person) helped a ton. Healing prayer and visualization were also part of my healing journey. Medication has also been a part of my healing journey. I say healing journey because I know that it is going to be a journey for the rest of my life. I had been on antidepressants at anther point in my life, so Jen felt that that could contribute to my brain chemistry and encouraged me to seek medical advice to get back onto some sort of medication. I was hesitant because I did not like that previous experience but I will say now I am grateful for medication. It has truly helped my sleep and the nightmares.  

I spent about a year in therapy with Jen. I probably could have stopped sooner, but I love her. I said goodbye to her right before we moved back to PA. I wish I could have brought her with us because I knew we were about to need another open heart surgery. One big hiccup in my healing journey was that I got pregnant. When I got pregnant I stopped all medication and did surprisingly well with it (I think). The problem happened when Nora was born and I was nursing. Between postpartum hormones and the stress of surgery approaching, I started to struggle hard again. The nightmares were back. I could not go back on my sleeping medication until I was done nursing, but I was not going to stop nursing until I left for surgery. I did try to find a therapist here. I mentioned caregiver PTSD and this therapist didn't know what I meant. It was just not a good fit like Jen and I were. I asked around to get a feel if there was someone else around here in PA for me, but I decided to go it alone. I had been through it before, I was slightly more ready for what I was about to experience, but really that didn't help very much. I was not able to get back onto the sleep medication until Maelyn was mostly recovered from surgery #2. Even after I stopped nursing it was hard to find someone who would treat me. I was kind of shocked at the medical system and the lack of sensitivity to mental heath. I could go on and on about the medical system in the US but that is not something I ever really want to get into.

Today everyone is healthy. I am on anxiety medication. I do not have a therapist. Do I feel worried about my kids health? Yes! Of course I do! But I do it to a more normal and control-able level. I do not have panic attacks. I am sleeping ok. I do occasionally have nightmares. But thanks to the anti-anxiety medication the dreams don't stress me out as much and they are not every night. Now they are just irritating because I'm used to it but they aren't supposed to happen. I hope that there is a day that I can be off medication and not be anxious and sleep well, but I don't know when that will happen. It's been a long road getting here, I don't want to mess it up!

Thanks for listening/reading. If any of this resonated with you, please find your Jen. Find a licensed therapist that can help your healing journey. Don't wait. It will be worth it. Ask friends to help you find help. Ask pastoral staff. Ask a doctor. You are not alone. You are not crazy. But it's not supposed to be so hard. I hope this encourages you to speak up and share our story. 

Tell your (real) story

I've been struggling to find the words lately. I'm feeling unworthy, unqualified, and unable to speak (well, write, actually) to anyone who will listen. Who am I to share my experiences, or what God is teaching me? I am just a girl struggling through life, just like everyone else. (Are those lyrics to a song? Did I just plagiarize?) But I need to remind myself, that is exactly why I need to keep pushing myself to write, to speak my mind, because I am just like everyone else. I am only a child of God. It's that simple. And that's all that matters to qualify me.

Another reason I've been hesitant to write is because suddenly I am afraid that I constantly come across as a downer and negative, and I don't want that. I want to be able to write super honestly, be real, and that will include the good and the bad. Really, I want you to see that the struggles and negatives in my life have actually helped me to be more positive and joyful than ever. That is what I want this blog to be about. My journey through all the stuff to finding the true joy.

But mostly, I'm afraid that I wont be an encouragement. What I want most is for my good bad and in between to encourage you!  I hope that by my honesty and vulnerability it will help you to find the courage to share your story. I saw a quote once on one of my CHD support groups and it said something like, "Keep sharing your story. It might just be the key to help some one unlock their own." It has stuck with me and has been an encouragement to me to keep writing. I know that hearing other peoples stories has helped me process my own journey. And keeping my life lessons to myself helps absolutely no one. I want to say here is my story, the real, non-sugar-coated, hard stuff, and here I am! Now I want to hear yours! Tell me your real story.

If you are going to go through something hard, you want it to have purpose and see something good come out of it. So I want all that we walked through to turn into something good, a story that encourages others. I want to show others that the story is never over. My story isn't over, and neither is yours. It is ever changing, new twists and turns will come, the good the bad and the in between will continue. What truly matters is what you make of it. Will you close yourself off, keep it to yourself, or will you turn it around and make something out of it? It is so cultural to "leave things at the door". When someone is hurting, it is only in the walls of their own home and you leave it there. But what if we welcomed people into our homes, into our lives? What if we let people walk through our doors?  I heard once that empathy is stepping into someone and sympathy is stepping away. Sympathy is saying I'm sorry for you, but empathy is saying I'm sorry, let me sit in this with you. Let's be empathetic, not sympathetic. If you are willing to sit with someone in their hard times, I'm sure you will have people willing to sit with you in yours.

I want to encourage you to stop comparing your story to other people and start opening up and relating with other people. There is no comparison, no person can compare to any other person because we are all totally unique and different, so why even try? We may have had the same experience, but I'm sure we handled it differently and come out of it differently. So instead of even attempting to compare your story to someone else, step into their story, listen and say I can empathize with that, I can relate with you in that. What if we were all vulnerable and honest? Maybe that tough stuff wouldn't be so tough if we walked through it together. Maybe we'd come out the other side with a new vision, a new lease on life and a new joy!

goals

Normally I do not do new years resolutions. Several years ago I realized that I do not like goal setting and that new years resolutions tend to just make me frustrated, so I decided to stop. If you know yourself, and how you work best, you know what you just should and shouldn't do. However this year a friend of mine encouraged me to use one of these fancy planners that have several calendars and make you do a vision board and goal setting for the year and then each month has goals and on and on... Anyway, it was fun, for about 2 weeks. And then February first hit and of my goals for the month I had reached about 55% of each of them but not actually done any of them to completion. I am so frustrated! Sure, sure, I did something and I guess, I appreciate that I did at least part of those goals because who knows what I would have accomplished had I not written anything down. But I think I have decided that that is not the best motivational tool for me. And seeing as it is February 18 and I have not even looked at it to make new goals for the month, I would assume that I am already behind on any goals I would have set! That's just not how I work. All of that said, one of my goals for the year is to blog twice a month. In January, I only got one post up. So half way there! It is already the 18th and I'm just now sitting down at my computer. I do still want to post twice a month, but in this phase of life I am ok with the fact that it just might not happen. But I would still appreciate it if you would come along for the ride with me! I think I'm going to adjust my goal to once a month... And if I do more its just a bonus.

January and February are always such hard months. They are cold and dark and boring! I find myself dreaming of moving to the beach, just about every day. It doesn't help that Maelyn begs to go to the beach every day. I think, maybe Maelyn would handle winters better at the beach and she would be able to live a better life, or maybe I'd be less afraid of anyone getting sick if we lived in the salty breezes. And the more and more I think about it the more and more I want to go and I think maybe it's possible! But then I remember, where you are is not what is important. Life will follow you anywhere. Even paradise isn't paradise when you live there full time. But most importantly God has placed us where we are for a reason. My word of the year is ROOTS, and dreaming of moving to the beach is not helping me feel rooted where I am. I know that we chose to live here for many great reasons and that God has even more reasons than we know. I just need to be content with these winters. On the bright side, winter here is much better than in Rochester!

Another goal of mine is to just do more as a family and to take more trips. This weekend we had Monday off and so I was determined to use the long weekend. I thought, this is a great opportunity to visit the beach! It might be cold but it is still a trip and the beach so lets try it. Well we procrastinated booking a place to stay and then it came up that this weekend was Tim's grandmothers 97th birthday and there was going to be a party for her. I knew we were not meant to go to the beach, but we were meant to so share our time with family. Share our kids with their grandparents and most importantly with their great grandmother. Even though I wanted to go south, and instead we went north. We almost called it off and didn't go at all out of fear of illness. But, it was so good. The kids did great in the car and staying in new rooms. They loved seeing everyone and everyone loved being able to see all the kids. Their great grandmother was so happy to see her great grandchildren and be able to hug and kiss them. They pray for her every night and I'm sure that is how she's still going at 97 years strong.

I had several other goals. But I'm letting any time frame go. Because if grandma Stocker taught me anything, it's that even if I get to have 97 years, life is short. So I think taking it one day at a time and treasuring my family is about all I need right now.

Love

If you could only instill one thing in your children what would it be? I feel like most people would say hard work, or something of the sort. But I believe that the only thing you need to be, is loving. If you can love others and love yourself, everything else will flow out of that. Kindness, empathy,  respect, humility, integrity, responsibility, forgiveness, all naturally flow out of love. And if you exhibit those qualities, I believe, you will be respected and successful. If you look at Jesus' teachings, they all come back to love. Even the first commandment is to love God! So I try to make love and kindness a first and foremost everyday in our house. 

I just finished putting up my valentines decorations. I think I might like putting up valentines decorations as much as Christmas decorations, maybe. I love having reminders of love all over the house. I often leave some of them up year round, because love isn't a passing holiday. But I put my valentines decorations out earlier than most because they perfectly fit the theme of our next holiday. On January 21 our family has Family Life Celebration Day. It's kind of like valentines day just for the 6 of us. Some adoptive families celebrate "gotcha day" and people celebrate all different types of anniversaries. Well January 21 is kind of like our "gotcha day" for Maelyn, and all of our kids. It was the day that we were told that we would never get to meet Maelyn. The first doctor to look at her by ultrasound, at my 20 week appointment, told us that she would not be able to live with the heart that she has and that we would need to let them know when we were ready to terminate the pregnancy. Luckily that doctor was wrong, Maelyn is able to live with that heart. We learned a lot about fetal development and life and death through that experience, but really we learned that every day of every life is a miracle and a blessing. We learned that life, health, time, nothing is guaranteed. So on January 21 we celebrate each other. We give gifts, have fun together and love on each other. We remember how lucky we are to have each other. It is not all about Maelyn, it is not about the negativity of that day. It is about our family and how blessed we are to have had each day together, and how lucky we will be to have more days together. I got a new decoration this year. It's a banner that says, "Love Every Moment". I think that sums up Family Life Celebration day pretty well, love each other like God loves you, and love each and every moment He gives us. 

2019 word of the year

While we lived in Colorado I tried to have a word of the year each year. And it was always so interesting to see how the word played out in my life. It was not always how I imagined it would, but it was always a perfect fit. It was a fun little thing and made for a great way to reflect on the past year and focus on the next year. In 2018 I did not do it. I didn't pick a word and I didn't even think about it. Let's face it, I had a newborn and was way to overwhelmed with everything else to think of one word! But if I did have one, it probably would have been Survive. I was drowning with 4 kids, a new home and looking my daughters surgery in the face.

To pick a word this year I decided to look back on the words of last five years. 2014 did not have an official word, but it was probably Change. We had a newborn and just moved to across the country to a place we had never been before and didn't know a soul. 2015 was Heart. It started as a word for love and allowing Jesus to reign in our hearts. But it became even more fitting as we discovered Maelyn's heart defect and had her first surgery. 2016 was Life. We were coming out of a super hard year. I had been so consumed with worry over the death of my children that I needed to shift my focus to life and experiencing it to the full. 2017 was a year for Joy. I was determined to choose it and live it because I had realized that true joy only comes from the Lord. This is also the year that Nora was conceived, born and named, Joy. 2018... Like I said it didn't have a word, but if I had to pick one now, it was probably Survive. We had recently moved, I had a newborn, I was struggling to balance 4 kids and new schools. I was just trying to survive each day. Also there was surgery. Which gives survive its deeper meaning.

Now that the year of survival is coming to a close, 2019 needs a great theme. After reviewing the past words and years, honestly the new word came easily. Roots. Our life has been in an upheaval in so many ways over the last five years. I want to grow roots that dig deep and stay still. I want to be so rooted that I am still and at peace. I want to be rooted in our family, in our church and in community. We have moved so much that it's hard to feel settled. It's hard to feel like we have community outside of our family. We've had so many trials that even though I know I am so rooted in Christ, I want to go deeper. I want my kids to securely rooted in Christ and in community. I think roots is going to be a lot about community. Even though we moved back to the same town, it's not the same community. And even though we have been here for a year and a half, I still feel like we just got here. I want to feel settled, nestle in for the long hall, make connections, be involved, feel needed, wanted and nourished so that I can continue to grow.

When I think of the image of roots, I think of the tress in Hawaii. Their branches would grow both up and down. I love that image of the green leaves reaching up and spreading out so far they were like protective ceilings but they would also send shoots stretching down from the branches to the soil below. I loved the huge trees who's roots were just everywhere. They were growing up and over and around and down. They were a tangled mess but they ensured that the tree was not moving and was getting what it needed. You couldn't even count the number of roots they had and the shoots going down from the branches had to the cut back by the people who were using the trees for coverage. I want to have crazy roots. And I want the wisdom to cut back what I don't need. I want to stretch out and flourish right where I'm planted. 

 

reflecting on 2018

I was recently asked by a close group of friends to reflect on 2018, remembering highs and lows, as we anticipate the new year. To which I promptly replied, pass! As soon as they suggested we do this I knew I couldn't, and I wanted to leave the room. At first I didn't even want to stay for the conversation because I knew that hearing from them all would force me to think about my own life as I related with them. As we went around the table and I listened to my friends share their deepest reflections, I was so touched. We have all had such different life circumstances, yet could relate to each other so personally on the emotional level. We all have highs and lows. We all feel deeply. We all have fear. We are all juggling a million things. I felt incredibly bad passing on my turn. It was not that didn't want to share. I was not afraid to talk with these women. If I'm going to dive into something, this is the group of people I would want to do it with! The thing is that I am not ready to reflect on this year. I might not ever be. These last five years have been incredibly difficult. Two of those years were actually great while being difficult. The rest, I have either blocked out, forgotten or am trying to forget. The worst part is that those years include both of my daughters first years. 

As a parent of kids with medical diagnosis you have to be strong, you have to be brave, you have to have everything put together. But on the inside, I'm a mess. It's like how Maelyn looks totally normal on the outside, but inside her chest is a total mess. Well on the outside I look like a totally normal mom, but on the inside I feel like a mess of emotional scars. But luckily I realize that, aren't we all? This whole adulting thing is kind of a scam... I think, on the inside, we are all actually still kids just trying to figure out what we are doing and how to raise other kids. 

So, if I truly reflect on my year, I see how I struggled to make it. This year was consumed by preparing for surgery, going through the recovery, and then trying to be normal again. And I, as the mom, probably did a fine job on the outside, but on the inside I have a lot of scars that I am not ready to deal with. Did you know that there is such as thing as caregiver PTSD? Well it's very real and probably more common than people think. I will have to write a whole other post on that topic. But that is why I can not reflect on this year. It is too hard. Moving forward is already harder than I expected it to be. I'm not ready to look back.

Just before writing this I was sitting at my desk, stitching together a mini heart pillow for Koko the lovie. Maelyn has been saying that Koko is sick now and has been bandaging her up and trying to help her feel better. Koko has spent extra time in bed and Maelyn said that she thinks Koko needs a little heart pillow just like the one she got at the hospital to help her feel better. Of course I said I can help you with that!, hoping this means that Maelyn is processing what she went through.  As I was finishing the pillow I realized I was sad but relieved that Koko is sick. Maybe once Koko is all better I can start to heal too. 

When we are weak

Why is it that we always seem to be challenged in the places that we are most uncomfortable? Those who love to work seem to be the ones who loose their jobs and are forced to rest. Those who fear death loose someone close to them and are left to face the loss. Those who are the healthiest get the devastating diagnosis and have to fight to regain their health. This isn't always the case, but doesn't it usually feel like it? 

In my case, I hate moving. I grew up in one house and never moved until I went to college. I always wanted the same thing when I had a family. Buy one house that suited our needs and never move. Do you know how many different addresses I have used since my freshman year of college? Eleven. (It's only been 14 years) I still to this day have nightmares about moving. I told Tim this morning that I woke up in a bad mood because I was having a dream that I was planning another move and was stressed about it! Every move stressed me out. Most of them I hated and I cried, a lot. Most of those were moves that were not my choice, or were partially my choice but I went kicking and screaming. Some of them were happy moves that didn't make me cry, but still stressed me out. But each one of those addresses taught me a lesson. Some big lessons, some small. Each time I felt pushed, pulled and stretched. I don't think I'll ever look back and say that I appreciate those lessons, but honestly they have made me who I am today, and that I do appreciate. 

Before we moved to Colorado our church preached a series called something like stepping out of the boat. Talking about Jesus calling Peter out onto the water (Matthew 14:25-33). Talking about getting uncomfortable for God. Saying yes to things that are hard. Doing thing that are part of our weakness. So when the opportunity to move to Colorado came up, we prayed about it, felt it was God calling us to step out of the boat in faith. We knew it would be hard, we didn't know why Colorado, why so far, why that timing. (This would be the move that I went kicking and screaming.) God wanted us to be okay with being uncomfortable, to practice letting him use our weakness. Because He knew a bigger challenge was up ahead. 

One year and three weeks after we made the big move to Colorado our baby was diagnosed with one of the most severe heart defects out there. At first we were told she would not live. That was so hard to hear, but, I hate to admit this, at that time, I was slightly relieved. I told God that I would rather he take her to heaven than have a medically needy child. I did not think I could handle all that she would need medically. I knew I was weak. I did not want to have to walk through surgeries. I did not want to have to see doctor after doctor. I wanted healthy kids! But life challenged me further, she didn't die, she was born with half a heart. And I am so thankful. I am weak. I am uncomfortable. I do hate her appointments. Surgeries have been nightmares for me. (Literally, I still do have nightmares.) But I have grown. I have learned lessons. I have been stretched and pushed and pulled and most importantly, loved. My kids are love. I still feel like I can't be a mom to medically needy kids, but by the grace, strength and power of my God, I can. I can because my kids are who they are and they embrace it and run with it and they love me as much as I love them. Actually I tell them that I love them more than they love me, but who's keeping track?

Can I encourage you to something? Step out of the boat. It will be hard but it will be worth it. Step out of the boat, choose get uncomfortable, before you get pushed out of the boat. Life happens. Hardship and trials will come your way. Life knows where you are weak and it will push your buttons, so before the unavoidable happens, grow yourself. I can't promise it will be fun or pretty, but I promise you will be blessed by it. So, what's your weakness? What are you afraid of? 

Here is one way you might be able to try this. Who makes you uncomfortable, who are you afraid to get close to because their life is just too much for you to handle? When you read my stories, are you overwhelmed? Does it make you uncomfortable to put yourself in my shoes? What if you befriended someone who is different from you, or who is going through something that scares you? What if you choose to empathize? What if you stop comparing yourself or your story, and start relating with them? Dive out of the boat into uncomfortable, I promise it will be worth it. You will realize that when you are weak, you find a strength inside of yourself that isn't yours (2 Corinthians 12:9-10). 

The Joy in the morning

Have I told you about Nora's middle name? Our boys have family names as middle names. So we had two family names picked out for girl middle names before we had any girls. Lyn and Aletta. The day that we found out about Maelyn's heart we changed her name from Nora Lyn to Maelyn Aletta. The Lord told us that her name was not to be Nora. And we thought that this was going to be our last baby so we figured this way we could use both middle names and be done. After Maelyn was born, we were done having kids, but I always thought about Nora. (Read Meeting Nora). I still thought about baby names, actually I still do. Is that weird? A little, it's okay. But at the time, as I thought about the concept of Nora, I wondered to the Lord what her middle name would be if it wasn't Lyn. And as Maelyn grew, and we walked through surgery and recovery and physical therapy, the Lord kept putting Nora on my mind. I don't remember exactly when but He told me that her middle name was supposed to be Joy. Joy was to come after all of the sorrow (John 16:20). After nights of crying over Maelyn's heart, Joy would come in the morning (Psalm 30:5). The Joy of the Lord was the strength  that got us through (psalm 28:7). Nora is the walking symbol of all of this. Her name means the Light and the Joy of the Lord. 

My mommy heart broke when I was told that Maelyn's heart was broken. Maelyn is truly perfect. She is who God made her to be. In the eyes of both her earthly father and her heavenly father she is perfect and there is nothing wrong with her. Even in her own eyes, she is healthy and great, and I pray that she always views herself as perfect and special. But as a mother, having a child from your womb be born imperfect, broken, not as she should be, and needing painful interventions, it is indescribably difficult. Knowing that my baby came from my body. Just knowing that she will have a different life. Knowing that she will never be healed. Watching her fight for life. Watching her miss milestones. Watching her struggle with different things. Waiting for things to get better, but knowing she will never be fully healed. All of these things were crushing my heart and my joy. But the Lord had a plan. When Maelyn was a year and a half old Nora Joy came to be. The Lord was fulfilling his promise.

Eleanora Joy is about to turn one. Watching her grow this year has been so healing. Her first year has been pretty much the opposite of Maelyn's first year. Nora has been perfectly healthy. She has hit milestones early. She has been loud and active. Nora is so full of love and joy. She wants to be one of the big kids. She is the perfect little sister for her siblings and completes our crazy little family so well. Nora loves her siblings so much and is so incredibly loved by them. We could not imagine life without her. She has brought a joy to our life that we didn't know we were missing. Nora has been slowly healing my mommy heart just by being her. I believe she has also helped Ben, Micah and Maelyn heal from the difficult year we had after Maelyn was born. God is so good to have planned all of this in advance and blessed us with Nora. She really brings us light and joy everyday.

I am a heart mom.

I've been trying to sit down to write this post for a long time but I haven't been able to find the words. Then I think, ok I'll just post an update about Maelyn, but realize I can't do that without writing this first. "Heart mom" is the term used in the congenital heart defect community for the mothers of children with heart defects. This community has other terms such as heart warrior for those living with heart defects and heart dad. Well, I've really been wrestling with my identity as a heart mom. I don't want it and I don't want it to define me, but yet it does. The day we found out about Maelyn's heart my life changed, my title changed. I didn't feel ready, but I never will be. I felt totally overwhelmed, but I still do. I still fall asleep thinking about my heart child. I still wake up thinking about my heart child. The future is still so unknown, but each day is a victory. 

It's one thing to be a heart mom at home; scheduling, monitoring vitals, managing medication, juggling kids, keeping everyone healthy. It's another thing to be a heart mom at a doctors office or hospital; advocating, translating, holding and protecting. It's another thing to be a heart mom out in public; watching closely, avoiding injury and sickness, explaining, yes those are surgical scars, no please don't touch my child, she might look cold, but she's not, if she says she's dizzy, she is, don't push her. One thing that has been really hard about being a heart mom is meeting new people. It has been nearly impossible to meet people and not tell them that I am a heart mom. Because when one mom meets another mom, the first thing we talk about is our kids and when I talk about my kids it inevitably comes up that Micah has a metabolic condition and isn't supposed to eat sugar and, oh yeah, my daughter has half a heart. At that point things always get awkward, and that is when I get frustrated that this heart life defines us. There is so much more to Maelyn than her broken heart, and there is so much more to me than having kids with medical needs, but it is a huge part of our lives. I've only been a heart mom for three and a half years but it feels like a whole life time. 

I am a heart mom. I've thought about burying my child more times that anyone ever should.  I've handed her off to be sawed open, twice. I've seen her scream in overwhelming pain and fear. I've looked into her eyes and not seen her in there. I've seen her stare back at me with no expression but pain in her eyes. I've held her while doctors and nurses did things to her that she did not approve of. I've had to tell her, it's ok, when I really didn't believe it myself. I've seen her question her safety with me. I've cried for her and with her in ways that have touched my soul in a place that I didn't even know existed. I've held her like a baby while she sobbed because she didn't understand what was happening to her. 

I'm a heart mom. I know my way around a hospital room. I know more about the heart than I ever thought I would. I own and can use more medical equipment than I ever thought I would. I have a bond with my heart child that is so close I can't even explain it. We have walked through it together, every step. Every single one of the many appointments, we have kept each other company and held each others hands. We have both comforted each other. We have spent nights snuggled up together watching movies in a hospital bed. We've spent more time singing in the car together. We've laughed and cried in the bathroom more times than I care to remember. We've played 'doctor Maelyn' and 'mommy Maelyn'. We've danced. We know each other in a way that is almost weird. I feel bad that I don't have the same relationship with my other kids, but at the same time I'm grateful that I didn't have to form the same relationship with them. Through it all we've been so blessed.

Being a heart mom isn't easy, and it never will be. Even when Maelyn is an adult and fully in charge of her own life and health care, I will still worry. I am the one who remembers what it was like to hear her diagnosis for the first time. I am the one who fought for my unborn baby. I am the one who took her to the hospital every other day after she was born. I will remember all of the hard appointments. I will remember the surgeries and  recoveries, when she will forget. I will forever be a heart mom. 

Here is THE thing though. I realized today, as I was fighting against letting my heart mom title define me, it's ok to let it define me, it does define me. Because this life is the only life we get, and this is the life that God gave us. God chose my family to be one of the many heart families out there. I've been struggling with that concept for almost 4 years. I've prayed daily for God to take that away and to heal Maelyn completely. But God has a much bigger and much better plan for us and I trust that. I look back over the last four years and God has been so incredibly faithful in sustaining Maelyn. That is the real story here. Through all of this, God was walking with us and holding our hands too. Every appointment. Every scary moment. Every owie. Every tear. God was there. He cried with us. He laughed with us. And he will continue to walk us through this life that lays ahead of us. Jesus has been our only strength, and that will never change

I started this blog when we moved to Colorado in order to update friends and family on our life but it quickly became much more. This blog is the story of my life as a heart mom. It is where I have written the cries of my heart and processed the complications of life. It is not really about the kids, it's about me. I am a heart mom.

As for Maelyn... She is 7 weeks post exracardiac Fontan procedure (aka open heart surgery) and she is doing amazing! After an extra stay at Hershey Medical Center due to fluid in her chest pressing on her lungs, she has been recovering fast and well. She is now better than before surgery! Her oxygen is in the mid %90's! She is acting like a normal three year old. She has the energy now that she never had before. She can keep up with her brothers, running around the house and playing tag. She is eating great again, she is independent again, she is her silly sassy imaginative self. She is in a sweet spot right now. She is just about recovered, the pain is gone, the weather is getting to be the best type for her, not too hot not too cold, she isn't sick, she is starting to forget the bad parts of the hospital stays. Next week will be her 8 week post op appointment. Hopefully she will get off the lasix and just be on her normal asprin. After that appointment we are going to need to enjoy this sweet spot she is in! We don't know how long she will feel this good. We don't know if winter will still be as hard on her as it was last year. It should be better but the cold dry air will always be more difficult for her than it is for us. We don't know how long her body will be able to function efficiently with this new circulation. At some point in her life her other organs can be affected and her heart can start to do some weird things to compensate. 

Everyday is a new day, a new challenge, a new blessing, a new victory. This is the heart life. 

Surgery is over

Maelyn was diagnosed in February 2015 and we have been waiting for and anticipating this surgery since then. Three and a half years of this major open heart surgery looming over our lives. Not knowing exactly when it would happen but knowing it was needed and coming. Her last surgery was equally as hard and anticipated but we didn't have to wait as long. It is also just different. It's equally as hard but different walking a baby through this and then walking a toddler through it. This surgeries recovery is also known to be more difficult due to the circulation it's making and completing the series. But...
We are home! For being only 6 days post op she is doing amazing. We are trying to make things as easy as possible for her around the house as her mobility is slightly hampered. She is not allowed to raise both arms above her head or use both arms at the same time to support herself. She also is not allowed to lay on her belly. So lots of step stools and low tables. We got out the training potty so that she doesn't have to climb up to the toilet every time she has to go. We don't want her holding it and waiting to go just because it's hard to get there! We just want to make things as easy as possible for her because we also don't want her to try and do things she isn't ready for yet. She will get up and walk around and play. She played beads and drawing. But we are also having a lot of TV time on the couch. She is still a little bit shaky on her feet sometimes so I try to keep an eye on her at all times. She doesn't like taking her medicine but she will with some coaxing. Part of the Fontan recovery is stomach ache and intestinal issues. The change in her circulation this time affects the lower half of the body and causes different issues. So getting her to eat has been an issue. Now she will eat but small portions and snacks. She is starting to feel better but still gets tummy aches and gassy. I think the gas has been the most painful thing lately. But that is a blessing! She rarely seems bothered in her chest and ibuprofen has been managing that pain well. It seems like her incisions scare her more that hurt her. They are a little itchy and that reminds her that they are there. Taking the bandaids, sticker and tape off was traumatic for her so we are trying not to put anything over her scabs and bruises by just wearing long sleeves.
Yesterday she took a bath and was a little scared that it would hurt her but she did fine and I feel better now that she is clean! She didn't sleep well last night because she kept saying she was scared. This is actually normal for her but we were hoping she would be so tired she wouldn't even wake up. I think she is more scared than normal and waking up more times at night than normal. She liked having one of us sleep in her room with her at the hospital. Pray we get back to normal routine.
The boys have been good with her. They like all the extra TV time! Nora took a little while to warm up to us when we got home. So much changes in a week when you are not even 1 yet. She seems so much bigger and different. She is getting much more independent, or I should say thinking she is independent! It is hard to keep an eye on this super mobile baby and also give Maelyn the extra care she needs. We were told that two weeks post op her incision is considered healed, and six weeks post op her bone is considered healed. So September 12 is the magic date when she is considered recovered and all of her restrictions are lifted. Just in time for back to school to be in full swing!





If you've read this far you care about us and how Maelyn is doing. And if you care about Maelyn and have been praying for her I want you to understand one thing. This surgery didn't really "fix" her, she still only has half a heart. The series of surgeries are palliative care for complex congenital heart defects. It will give her better quality of life and longer life, but it is not a fix. There is nothing else to do now but watch and wait. And if something comes up, we figure out what to do. The older she gets, the bigger she gets, the more pressure on her heart and lungs, the more risk of complications. This circulation has also been linked to liver damage and increases risk of stoke. She will be on heart medication and closely followed by cardiologist her whole life. She is part of a small but growing population of people with this type of circulation, so research is still being done to figure out what the best course of action is and what the length and quality of life will be. Maelyn is one of the best cases and doing remarkably well. We have no reason to expect any future problems or complications but she still is and will always be considered medically fragile. Her situation can easily become critical and complicated. So we pray everyday that God would protect her can keep her heart healthy and functioning perfectly. We know God created her and gave her this heart and we don't know why, but we trust in his plan for her. We pray that he would help us to parent her and her siblings and that we would be able to get her the medical help she needs.              

Prayer is the best medicine

As this next surgery approaches I've be doing a lot of reflecting on the last surgery. How did we make it through? What was helpful? What was not? It is crazy that it was almost three years ago that we walked through Maelyn's first open heart surgery. The biggest thing that helped was prayer through community. We had communities all over the world praying for us and we felt it. Prayer works. We know that Maelyn did so well the last time because of those prayers. Every time I put out a specific prayer request, people prayed and Maelyn made progress.  But since we moved and had a baby and four kids has been insane, I feel like I've lost a lot of that community that prayed so fervently. 
So here is my plea, help surround us with prayer! Any way you can. Even if you think you personally can't pray, you can! Try it, it's easy! There is no formula, you just say, Hey God! blah blah blah Thank you Jesus! If you know people who are serious about prayer, please ask them to stand in prayer for us. As parents, it gets hard to pray. Watching your child in pain and suffering is so challenging that you loose the words. That is why we need others to literally pray for us, when we don't have the words. God hears the smallest prayers, even when there are no words, but the more people praying the more power in the spirit. And the best thing about this request is that you can pray for us with out being with us. We would love to have people all over the world sending requests to God for Maelyn's health. So when you think you can't do anything to help, you can. This is our number one need. You can't be the doctor or a surgeon but you can pray for the doctors and surgeon. You can't be at the hospital with us but you can pray that we would feel that you are. 
If you want to be part of this journey by praying for us, subscribe to the blog, follow me on instagram and facebook. I post the most on instagram but will put prayer requests on here and facebook.



So the next time you hear about anyone in need, not just us, stop and pray. Because prayer is the most powerful action you can take. 

The count down has begun

So here we are. We are home from all of our vacations for the summer and we are in the waiting period before surgery. I think of these next two weeks as the "don't get sick quarantine". But the fact that it is summer has me much less paranoid this time around. We will hopefully have some play dates and some outside time, but it will have to be limited. The kids don't really know what's coming. They know that their Nana and G-pa are coming to visit and they are so excited. I have told them that mommy and daddy and Maelyn will be going away while they are here but they keep forgetting. Maelyn knows she has a 'big' doctors appointment coming up and that she gets to go to the hospital and she is actually very excited. I don't want any of them to be scared. Right now they all think doctors and hospitals are cool and fun and I want to keep it that way. Tim and I have mixed emotions. Obviously we are dreading watching our three year old daughter go through and recover from open heart surgery. But we have been waiting for and anticipating this since she was diagnosed prenatally. So we also just want to stop thinking about it, stop preparing for it and get it over with so we can move forward, whatever that may mean. We are hopeful that once she is recovered from this surgery, she will have the best outcomes and be able to have the best normal life. We are hopeful that she will have more energy and will be able to keep up with the other kids, that her coloring will be better, that she will not struggle as much with the changing seasons and that her body will thrive under it's new circulation with no future complications. We just have to get through the next few months, and continue to pray for all of these things.  We have decided to leave Nora with my parents and the boys while we go to Philly with Maelyn. It is going to be so difficult to leave my baby for a week +. She has been attached to me for 9 months, well technically 18 months, and it is not natural to leave her with anyone for any amount of time. We have been working on weaning this last week. She just started to take a bottle/sippy cup. I am trying not to breastfeed at all but I have been once a day because she drinks so little from the cups and I don't want her to get dehydrated.  We are also sleep training because that comes with weaning and leaving her with someone else too. Over all it's going well, we are making progress, it is just hard. She is my last baby and she is growing up so much faster than the others! She is crawling, pulling up, trying to walk, eating solid food!

Please pray with us for healing and best outcomes. Pray for Nora and I as we prepare to be apart and for our time apart. That the kids would still think doctors and hospitals are cool after this! 

Life is full

This last year has been a blur. I started writing my last post when I was pregnant with Nora and I talked about how our hands were full with three kids. Well I wasn't lying, and I'm not going to sugar coat it, four kids has been hard. Super hard. Last year Ben was in half day kindergarten in the afternoon, Micah was in two mornings a week preschool and Nora was born a few weeks into the school year and then it was winter. We had just moved and being pregnant and then with a new born I never really left the house and wasn't able to make connections or build a support system here. Praise God that Tim works from home and has a flexible schedule and was able to help some. Also my computer was out of commission for the whole winter so that made it hard to write, but if it had been working, I still wouldn't have written. I rarely sit without someone on me for more than two minutes. As I sit to write now, I have two babysitters watching the kids for me to give me some time to myself. 
The move has been harder than I expected. Like I said I don't get out much so it has been hard to reconnect with people and to build a new support system. But luckily we are not in a brand new place where we don't know anyone! We do have old friends who have been willing to help when needed. And we have fantastic neighbors! We do love our house and our neighborhood. Ben loves his school. Transferring medical care and doctors has been way harder than I expected. For one we had, in my opinion, the best pediatrician ever. We miss our pediatrician and her office so much. I wish we could have brought Dr Shah and Kalee with us! We also loved Children's Hospital Colorado. I have never heard a bad thing about Children's Hospital of Philadelphia but honestly we have not been having the easiest transition. It is hard to feel like I am not getting my kids the best medical care that they need but yet I don't know how to fix it. At Children's Colorado and our pediatricians office we always felt like our kids were important and we were listened to and that the doctors were going above and beyond to make sure our kids were healthy and getting what they needed. And I don't feel like that here. I feel lost in the shuffle but because we are new to these new offices I don't know how to get out of the shuffle. Does that even make sense? I don't know. 
So how are Micah and Maelyn doing? They are doing well... 
Micah is a pretty typical 4 and a half year old boy! He is full of energy but probably over exerts himself everyday and then crashes due to his condition. But we are so proud of him for how much he is starting to understand his own needs and limitations. Ben and Micah have both been asking a lot of questions about Glycogen Storage Disease and learning about genetics. They are also starting to be able to pronounce it! (Micah used to call it Magazines Storage!) Micah will now say no to some sugary things because he knows that they are not good for his belly. And he is starting to come ask me for protein when he is feeling tired. He is still on his corn starch regimen where he gets it at bed time and in the middle of the night. He has only been seen at CHOP once for a new patient visit, so his doses have not been changed. We are still trying to figure out exactly how to get is annual liver ultrasound done which was due in November. We have also been trying to get him on Glycosade, the only medication for GSD, however we are having issues with insurance/manufacturer/distributor. You know, the US medical system cycle. No one else would think anything is wrong with him but as his mother I worry and notice little things. He still has his little belly from his distended liver and he is very sensitive. But he also still has a smile and giggle that could melt any heart!
Speaking of hearts, Maelyn is doing well but we are definitely ready to get this next surgery over with. Moving to sea level last summer was great for her. She did really well. Then this winter she started to struggle a little bit with energy and breathing. Her oxygen seemed to stay at 80% but she would get out of breath very easily and would say that she was dizzy when she did any physical activity. Once the humidity returned this spring she seemed to bounce back and was doing great! We spent the spring getting outside and going on vacation! We went to the beach and the lake and to grandparents houses. But then the heat hit and she is not doing as well this last maybe month. She is tired a lot and again can't do too much physical activity without getting out of breath and needing to rest. She often needs to be carried or in the stroller. She will run around and play but only for a couple minutes. This time, unlike the winter months, her oxygen has seemed to go down little bit. She is mostly in the %70's, and if we get a steady %80 it's a good day. Her coloring last summer was much better. This summer she is back to being more purple-ish. She just looks like she is cold all the time. But surgery is officially scheduled. Which at this point is a relief. This is the big surgery. The one that we've been waiting for since she was diagnosed three and a half years ago. This is also the last step, the last big surgery, unless something happens. After this, the rest of her life is a wait and see kind of deal. Once she is recovered she should be fine, great, normal, until her body decides it can't handle it. But we are so  incredibly hopeful that she will continue to live a normal life and that her body will do great. There are people living very long lives with this now and Maelyn has done nothing but great so far. 
Surgery is scheduled for August 1. We will go to Philadelphia on June 30 for her preoperative appointments. June 31 she will have her sedated MRI and cardio catheter procedure and then will be admitted to the hospital. The next morning they will take her for surgery. We are expecting to be in the hospital for a week, as long as there are no complications. My parents are going to come stay with the boys at the house but Nora still will not take a bottle and isn't sleeping through the night, so we don't know exactly what we are doing with her. 
Please pray with us that; Nora would take a bottle/cup. That plans for the hospital stay would fall into place. That Maelyn would stay healthy leading up to the surgery. That the boys would be able to ask questions and understand what they need to in order to help Maelyn through this. That Maelyn would be able to understand the need and importance of this. For Maelyn's emotional well being. That the doctors/surgeon/anesthesiologist/nurses would be fully prepared for Maelyn. That God would go before us and prepare the perfect outcomes. For Maelyn's recovery, all of it, in the hospital and at home. And for Tim and I to remain strong for our kids. 
We know that God is carrying us and our children. That he has a plan and a purpose and a future for all of us. And because of that we know that your prayers are what is sustaining us.

Meeting Nora

*I started writing this post while I was pregnant and never got around to finishing it!*
I want to start keeping up with the blog again so I figured I'd start by finishing this one, because it's a good one!

Let me tell you a story...

When I was a kid all I wanted was to be a mommy. I wanted a big family, like 5 or 6 kids, and a dog and a cat. 
Then when I was a teenager I had a bizarre dream that stuck with me. It was one of those short but vivid dreams that you wake up from and it's so clear you never forget it. One of those dreams that you know came from God. In the dream I was walking down a sidewalk and a little girl was running ahead of me. I remember thinking she looked so much like me and was my daughter. I called out, "Nora!" to get her to slow down and come back to me, to keep her safe. And as she went to turn to look at me I woke up. It was strange to wake up as a young teenager and feel like I then knew what it felt like to have a child. It was also strange because I did not know anyone named Nora and that name was so random to me. 
Shortly after the dream, possibly before, I'm not sure, I met Tim. He knew I wanted a big family from the beginning and I guess was always on board. Once we were officially dating we were serious and intentional about dating to get married so we had the kids conversation early. By college we knew we wanted 4 or 5 kids and we even had conversations about names. So at some point I told Tim the story about my dream and he said, I like that name, we should use that!
Once we were married and decided to start having kids, like most people, it didn't go as planned. We were not getting pregnant right away and I was pretty upset about it. One day I met up with a friend for coffee that I hadn't seen in years. Without telling her much about what had been going on with me she offered to pray over me. After she prayed she said that God had given her a vision of a little girl in a field of flowers. The little girl was holding a four petal flower and she said that God was saying that the number four was significant. Of course I held onto that image and spent years trying to figure it out. 
Flash forward again, I had two boys. No girls, which was fine, I had actually wanted boys. But no Nora and no numbers 4... We liked our life with two boys but decided to keep adding to our family. Since the boys were so close in age we didn't want a large gap in ages so we started trying for the next and got pregnant quickly. Then comes the story of Meeting Maelyn. She was supposed to be Nora, but God told me this wasn't Nora, this was Maelyn. Through everything with Maelyn and Micah's diagnosis, Tim and I had decided that we needed to be done having kids. It felt like there was too much risk getting pregnant again and our plates were plenty full. It was hard for me to accept that we were done at three kids but I was ok with it. I knew it was the right decision. ...But still no Nora and no number 4...
When Maelyn was a year and a half I felt this stirring from the Lord that we were not done having kids. I tried to pray it away, justify it as my own thing and felt crazy for even thinking about it. I prayed about maybe a distant future foster or adoption since that is something we had talked about in the past. But didn't feel like that is what the Lord was saying. I eventually brought it up to Tim and he said, in the best way possible, nope! And I was ok with that, I didn't want to be pregnant and our hands were full. What was this!?
Three months later we had a little surprise. I mean, I wasn't that surprised, God warned me several times, but it also wasn't exactly planned... I knew immediately that it was Nora, the little girl from my dream was real. The pregnancy was considered high risk, at lot of tests and ultrasounds and worried doctors, but I knew she was fine. I was never worried. God had already promised this little girls life. Nora has been my biggest and healthiest baby. 
God promised four and here they are. God named her. God has shown me her as a three year old already. I trust God with my children, with my life, because he keeps his word. His plan is so much bigger than ours. 

Quick Maelyn Update

We have been on the east coast (at sea level) for two months and I am giving that the credit for how awesome Maelyn is doing. Her color looks better, her oxygen saturation is back in the 80s and you would never know anything is wrong with her. She is also becoming more and more of a two year old girl every day, if you know what I mean... the sass and personality are coming out!

Maelyn had her first cardiologist appointment with CHOP this week. Instead of driving two hours to Philly, we are able to go to a satellite clinic in Lancaster, which is about 50 minutes from us. It is not much longer of a drive than we had in Colorado. Because it is a satellite office it's also much smaller and feels more like a doctors office than a hospital. With CHOP's cardiac clinic, we are able to see any of their doctors, we are not assigned to one. This is good, because it gives us more flexibility but we miss the intimacy we had with her doctor and nurses in Colorado. I think, no matter how good the doctors are at CHOP, we will always miss her team in Colorado. They will always have a special place in our hearts, having walked with us through pregnancy, birth and surgery. I will never take for granted how blessed we were to have Children's Hospital Colorado for all three years we needed them. The doctor we saw at this appointment told us she looks great. Her oxygen being in the low 80's is just fine and as long as Maelyn tolerates it fine, the plan will be to let her grow and get bigger before surgery. He said that we will start thinking about surgery next year and in the mean time do four month follow ups. Hopefully this will give us time to welcome the baby home and adjust to life with 4 kids before we jump into another major surgery.

We are quickly settling into life here in Pennsylvania. It's been great catching up with friends. I can't believe how, other than a few more kids and a new house/neighborhood, it feels pretty much the same. 

Update from Pennsylvania

So, it's been awhile. Sorry. Our life has been extra crazy. I'm actually writing from our new home in Pennsylvania! But I guess I'll start where I left off. 

Maelyn's MRI went really well. She recovered well and they did not end up having to do anything but take measurements. The results came back great too. We were thinking that the  MRI and her oxygen level would make her need to have her Fontan surgery sooner, but when her results came back her doctors decided that she did not need surgery right away and her surgeon wants to wait until she is closer to 3 years old if possible. So we were told to just keep monitoring her at home and come for a 6 month follow up! 

In the mean time, while we were waiting for MRI results, I found out that we were pregnant! And Tim officially started working from our basement. With Tim working from home and another baby on the way our house in Colorado was closing in on us and we were trying to figure out how to make it work for our family. We looked at moving locally but they real estate market in Westminster was just too crazy to afford it. We looked into adding on to our house but the cost and the idea of living through major construction was daunting. So at some point Tim brought up the idea of selling our Colorado house and moving back to more affordable and closer to family Pennsylvania. My response was literally, "don't tease me". But he was serious. He just had to clear it with his boss (who is in Germany) and we had to wait and see what was going on with Maelyn and surgery. My first thought was that we couldn't move until after surgery because I really wanted her same surgeon to do it. But the idea of waiting over a year to move and to have 4 kids in that house was also not fun. Tim went to Germany shortly after we discussed the idea of moving and talked to his boss who gave him the green light. Eventually I got over the idea of surgery in Colorado and realized that if we moved to Pennsylvania, Maelyn could have surgery at the #2 hospital in the country for her diagnosis. Both kids could transfer to specialists at CHOP. But for some reason we didn't want to make a decision, I think we didn't want to rush it... But then we realized that if we were going to move, we needed to move before surgery, before baby comes, before Ben starts school, and for that matter before our vacation to the east coast which was already planned for May! By the time we sat down and looked at the calendar we realized that if we were going to do it, we needed to list our house for sale that next week. I called our realtor and we scheduled it. 

Needless to say the last four months have been insane. We in one week we had our house listed for sale, sold it in 4 days for over asking price, moved out 4 weeks later. We drove to NY and moved into my parents house. Tim went back to CO and packed up our stuff and drove it to PA. We had a weekend in PA to look at houses, put an offer on one, countered once and got under contract. We went to Myrtle beach with family, Maelyn turned two, we spent over a week at the family lake house, then went back to my parents house to pack up again and move again, this time into our new house in PA. So after six weeks of moving around and being homeless we are finally in our own home again! We've been here for five days and you would not believe how settled we are and how much we have done! Thanks to friends and family we got everything moved in quickly and my parents in law painted three large rooms in two days. We've already changed out light fixtures and unpacked almost all of the boxes! I still have a room to paint and we are looking for a couple of furniture pieces but we are pretty much settled. And we are back in Mechanicsburg. The whole time we lived in Colorado we knew we wouldn't be there forever and so we had several conversations about, 'if we could live anywhere, where would we go?' And my answer always came back to, I would move back to Mechanicsburg. For several reasons, I love it here. And even though Tim has dreams about living off the grid in the middle of nowhere on a lake with 20 acres of woods... realistically he realizes that Mechanicsburg is where we want to raise our family. But when he retires and drags me to the middle of nowhere to live off the grid, don't be surprised. 

Of course this all happened while I am pregnant. This pregnancy has also just been the hardest physically yet. I also got the worst cold that has ever happened right as we were packing to move. I am still struggling with sinus issues two months later and was no help packing. My first prenatal appointment was a high risk assessment. We had some early DNA testing done which came back as not even able to be tested or something super weird and rare which is actually the thing that is now still making this pregnancy high risk. We have had a lot of ultrasounds and the baby looks good but because the test failed my already elevated risk is even higher. We have had one fetal echo but will be having another to double check for another congenital heart defect. But here I am, going on 24 weeks pregnant with a seemingly healthy baby girl! We are planning on her coming in early to mid October! Her room is the only room that has not been unpacked because, well, I have some time. 

Tomorrows procedures

Tomorrow is Maelyn's MRI and cardio catheter surgery. I am trying not to be anxious about it. Sometimes it feels like the waiting and anticipation is the worst part of surgery. I just want to get it over with because I know we will get through it and she will be back to her normal self in a few days. I know what it is and what to expect. We've kind of been through it before. The hardest part is watching your baby go through hurt and knowing you can't explain to her what is happening. It's handing over a happy, seemingly healthy, child and getting back a child in pain. That part will never get easier as a mother, but as she gets older it will get easier on her as she will be able to know what to expect. We are all learning how to adjust to this a normal part of life. She will need this procedure again and again throughout her life. This is just the first of many, tomorrow is just the begining. Tomorrow is just getting ready for the next big open heart surgery. But one step at a time, right? The one thing I have learned to do as we adjust to this life is to live one day at a time. It's much less stressful and so much easier to enjoy when I go one day at a time. All of our days are numbered. No one knows how many we have. But knowing Maelyn's odds of living as long as the rest of us are lower, we need to enjoy every day we get with her. Her just being here is a miracle that I never forget. She is such a blessing and brings so much joy and love to our family. I can't imagine life without her. God created her perfectly. 

Maelyn and I will be leaving our house at 5:15 am tomorrow morning, checking into the hospital at 6 am. She will be under anesthesia from about 7:30 am until somewhere around 1:30 pm (mst). Tim will be dropping the boys off at a friends house for the day and meeting me at the hospital to wait for Maelyn to get out of surgery. During these times, please pray for strength and peace for all of us. Pray for God's provision over Maelyn and the procedures she will have done. Pray for all of the doctors and nurses that will be taking care of her. Pray that she handles the anesthesia fine. After she is out of surgery she will need to lay flat on her back for two hours. Pray that will go smoothly... I'm not sure how that is going to work. There is a 50% chance that we will get to go home that night. Right now I am planning on staying the night, but pray that Maelyn does so well and that her body handles all of the procedures and heals so well that we get to come home. Through everything I just pray that God will show up and that He will be glorified. We have seen the healing work of God, we have felt the joy and strength of the Lord and we expect to encounter Him more. I will give thanks to God in all circumstances because He is my joy and my strength. 

Maelyn Update

After Maelyn had her bidirectional glen operation her oxygen was great. It was a very consistently 85%. So we stopped checking her. Then when we went to NY last summer we started checking her again and she had dropped to 80-81%. I was really confused and a little concerned but her doctor assured me that was just fine. He reminded me that his magic number is 76%. He said if she is consistently 76% or lower, then we should bring her in to see him. When we got home from Hawaii I started to notice Maelyn's coloring looking worse than her usual purple tint. I started randomly checking her oxygen stats. Because we had been checking her pretty rarely, I was not sure if our sensor was working properly or not and we only had one left. So as I was getting oxygen saturations any where between 80% and 64%, I was confused. Was she just sick with a cold? Was I not getting a good enough read from the pulseox? After a few weeks of randomly checking her oxygen about every other day, I knew she was pretty consistently averaging 76%... the magic number. I knew it had been weeks, so it wasn't a cold. We tried turning the heat up, keeping her inside and in lots of layers, maybe the winter weather was affecting her. But her stats stayed the same. After she was recovered from the bidirectional glen, we were no longer part of the 'high risk clinic', she was just doing regular follow ups, so I wasn't sure where to call anymore... I tried scheduling but they couldn't get us in until March. So I called the nurse line and they went straight to Maelyn's doctor and then was able to schedule her for the next day. We got to see her doctor, the other single ventricle specialist doctor and her single ventricle nurse. They explained that she is still part of the 'single ventricle clinic' so I can always call her doctor or nurse directly. Maelyn did really well at the appointment and was in a very good mood the whole time. Everyone was glad to see her. In clinic her oxygen was still 77% but they were glad that she was otherwise doing great. They agreed that there was no outward explanation for her oxygen dropping. Her doctor explained that sometimes when your body is not as is should be it does weird things to compensate, and he thinks that her body is growing extra arterial branches to compensate for her heart. These arteries are most likely bypassing her lungs and therefore adding more blue blood to her heart. The only way for them to see them and fix them is an MRI and Cardio Catheter. Luckily they did not feel that she is in a situation that is urgent, she did not need to be admitted or have it done immediately, but it needs to be done fairly soon so that her oxygen does not get any lower. Right now the procedures are scheduled for January 30th. It will be an all day procedure. She will be under the same anesthesia for both the MRI and cardio cath. It is an out patient procedure but there is a 50% chance that she will be admitted after, depending on how she does coming out of anesthesia and how her body handles the cardio cath procedure. The cardio cath is when they go into her heart with a probe through an artery in the leg. While they are in there they will check pressures and blood flow as well as try to tie off the extra arteries her body has grown. There is a chance that they will need to go in again if they can't get them all tied off in one procedure. We knew she was going to need the MRI and cardio cath before she has the Fontan operation, so it was not all new news or a huge surprise. We just thought that we wouldn't need them until the summer. We thought we had more time. More time to pretend to be normal. It was really nice to not be scheduling appointments at the Children's Hospital and to not be worried about getting a cold. We had jumped back into activities and now we feel like we need to pull back a little. We are back into worrying about germs. Maelyn getting even a cold, with her oxygen this low, could hospitalize her. We are trying to be normal, but we can't really, mostly because it is winter and it is cold and flu season. I did ask her doctor about the possibility of moving her Fontan operation up sooner but they are very hesitant about doing any surgeries while it is cold and flu season. So we are going to get through this first cardio cath, see what they find and go from there. Part of me wants them to just do the Fontan and get it over with so we can try to move on. But I also know that isn't how it works. Things, like these arterial branches growing, will always be coming up. Her heart will never be normal and we will never know how her body will cope with it. Just because she has the Fontan over with does not mean we will ever be hospital free. I am really learning to just take it as it comes. I've accepted that this is our life. I call it 'normal life' and 'hospital life' but really to us it is all becoming normal. I've also come to know and trust the Children's Hospital. It's not as scary as it used to be. 

Other than her color Maelyn seems totally fine. Great actually. She's talking more and more, walking and trying to run!, eating great, sleeping fine and developmentally finally right on track!  The boys are great too. Growing too fast. Which makes it hard to be in the 'can't get sick' phase. We aren't going places or doing things like normal. Ben is still going to school, but I've asked them to let me know if anyone in the school gets sick because I will probably pull him out until either Maelyn is in the clear or everyone in the school is healthy again. I am being very selective in other activities and play dates. It's really hard to not do things when everyone is generally doing so well. I have to remind myself often why and the importance of her not getting sick, and also that this is a season. Some day we will be able to be normal again. We had just planned our big summer trip, everything was set. But now that Maelyn's surgery dates are more up in the air, that might change. I am hopeful that it wont, but also trying to be flexible if it does. I was just so excited about this trip. So if you are praying for us, here are my specific prayer requests. Health. Pray that God would protect us from any illnesses. Oxygen. Pray that Maelyn's oxygen saturation does not drop any lower. Timing. We want God's perfect timing, but I also want timing to work out easily without too many life disruptions. Surgeries. Pray over all of the procedures Maelyn will be needing this year. Family. Pray for our family as a whole. For all 5 of us. We are all in this together.