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!