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. 
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.
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!
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.
