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.