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.
Monday, July 10, 2017
Wednesday, June 21, 2017
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.
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.
Sunday, January 29, 2017
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 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.
Monday, January 16, 2017
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.
Sunday, January 1, 2017
A New Year
Merry Christmas! Sorry I missed you in December. Our Hawaii trip made Christmas come quickly and had me extra busy when we got back. Hawaii was great. It was perfect. I had three days to myself which were so refreshing. I did a lot of walking (shopping), pool sitting, people watching, and a little bit of reading and swimming. The weather was nice but rainy, so it was hard to hang out on the beach because it would suddenly get windy and rainy. But I couldn't complain because I mean, I was in Hawaii! Tim and I had two days together and we packed them with lots of sightseeing. We had so much fun. When we got home the kids said they didn't even miss us. Then we got into Christmas mode! This Christmas season was so much fun! The boys were so excited and counted down every day. Micah loved driving around at night and looking at Christmas lights and Ben kept telling me that we didn't have enough Christmas decorations. This year it was just the 5 of us for Christmas. We missed family but it was actually very nice to just be us this year. It was more relaxing and we were able to enjoy it more. Christmas eve we made it to church and then came home and had a big dinner. The kids each got one present. Ben helped put out cookies and eggnog for Santa (which the dog ate as soon as we went up stairs). Once the kids were in bed Tim and I spent Christmas eve watching A Christmas Story and eating cookies and gave each other one present, it was perfect. Christmas morning the kids did not wake up all excited, I don't know if they forgot it was Christmas or what, but when I heard them talking I went in and reminded them. They were excited to see all of the presents under the tree and kept making sure there were actually presents for them. Maelyn was actually excited for presents this year. She was so cute opening them. She would get excited but then open it really slowly and cautiously and wait for us to show it to her. We always open stockings first, and then eat breakfast and then open presents. The kids didn't like having to stop opening and playing in order to eat, but the did. We tried to maintain some order to opening presents and I tried to get pictures of each present for family who sent them, but by the second present for each kid we just let them go and stopped taking too many pictures in order to just enjoy the moment. It was a wonderful Christmas. We are so blessed.
Looking back on 2016 it is hard to believe how much growth and healing our family has been through. The kids have grown so much. Ben just gets smarter and smarter. Micah is healing and getting more energy and personality everyday. Maelyn is growing and walking and developing her personality! I personally feel like a completely different person than I was a year ago. For me 2016 was my year of healing. In 2016 we didn't have any hospital stays. My kids were all healthy and 'normal'. We didn't have any big life changes (no moves, no babies). It was weird! But I used it to regroup. My word of the year was life, and it was so fitting. I came back to life, I found hope in life, and we just lived life! 2016 was not without it's stresses and disappointments, but after what we've walked through the last 4 years we feel more equipped to handle what life throws at us. I've learned to enjoy everyday, take in every moment of my kids and recognize the miracles and blessings around me. I've learned to fear less and trust God more. And that is what life is about.
As I look forward into the new year, knowing Maelyn has a very major surgery coming, I am looking at it through my new lens. I no longer am walking into fear and dread and uncertainty. I'm able to look forward with hope, knowing that God is good. He will provide, He will protect, He will make all things right, because He can be trusted to keep His promises. I've known my word for 2017 for a while now. And I feel like this ones going to stick as my word for the rest of my life. Joy. 2016 taught me what joy really means. Joy is not a fleeting emotion. Joy never ends. Joy is never depleted. Because God is Joy. God is MY joy. And the joy of the Lord is my strength. 2017 is not going to be easy. I am not looking forward to surgery and recovery. It is going to be hard and horrible, but I know that God will provide us the strength to get through it, and that is my joy.
Looking back on 2016 it is hard to believe how much growth and healing our family has been through. The kids have grown so much. Ben just gets smarter and smarter. Micah is healing and getting more energy and personality everyday. Maelyn is growing and walking and developing her personality! I personally feel like a completely different person than I was a year ago. For me 2016 was my year of healing. In 2016 we didn't have any hospital stays. My kids were all healthy and 'normal'. We didn't have any big life changes (no moves, no babies). It was weird! But I used it to regroup. My word of the year was life, and it was so fitting. I came back to life, I found hope in life, and we just lived life! 2016 was not without it's stresses and disappointments, but after what we've walked through the last 4 years we feel more equipped to handle what life throws at us. I've learned to enjoy everyday, take in every moment of my kids and recognize the miracles and blessings around me. I've learned to fear less and trust God more. And that is what life is about.
As I look forward into the new year, knowing Maelyn has a very major surgery coming, I am looking at it through my new lens. I no longer am walking into fear and dread and uncertainty. I'm able to look forward with hope, knowing that God is good. He will provide, He will protect, He will make all things right, because He can be trusted to keep His promises. I've known my word for 2017 for a while now. And I feel like this ones going to stick as my word for the rest of my life. Joy. 2016 taught me what joy really means. Joy is not a fleeting emotion. Joy never ends. Joy is never depleted. Because God is Joy. God is MY joy. And the joy of the Lord is my strength. 2017 is not going to be easy. I am not looking forward to surgery and recovery. It is going to be hard and horrible, but I know that God will provide us the strength to get through it, and that is my joy.
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