Last weekend we really started getting ready to move. And by we I basically mean Tim. We closed on our house on Monday morning and started taking loads across the street that afternoon. Two pastors from our church came with the church van and trailer and helped Tim get all of the the garage and basement moved. Then some friends came in the evening to continue to help Tim get stuff moved. We also had a friend volunteer to paint all three bedrooms for us! He did an awesome job and did it so fast! By Tuesday we had a pretty good start moving, and all the painting was done. A friend came over during the day for a couple hours to let me get over here and start unpacking and bring empty boxes back, which was super helpful. I hate the unorganized/stuff everywhere part of moving, so being able to unpack as we went was really helpful to me. They left the church van and trailer for us to keep using so Tim got a couple loads over himself on Tuesday.
I thought I would have pictures of the move but in the chaos I did not take any pictures. I didn't even get pictures of the house empty because we started moving in so fast. Once we are settled I'll get pictures of it.
Wednesday was the big move IN day. It was such a long day. After breakfast I dropped the boys off at my friends house. She graciously offered to watch them ALL DAY... Bless her. They did great but didn't take naps. After I dropped the boys off I ran to a couple store to get some groceries, diaper and accessories we needed into the new house. And then it was the real packing mode. We had to pack up the boys dressers and bedding and finish packing the last of the bedroom, bathroom and kitchen things we had never packed because we were using them. I never got to the kitchen to finish packing all of the dishes, glasses and food. I had to head over to the new house to direct "the movers" (aka Tim's co-workers) who had started taking loads of furniture and boxes to the new house. They did a great job getting stuff out of the house and loaded and unloaded so fast! I was just trying to keep up! Eventually I realized what time it was and I knew I needed the boys room put together and unpacked before I went and brought them home. But the pizza had just come for the men and the internet guy was here, it was kind of crazy. So I begged and got some guys to assemble Ben's bed as I unpacked his clothes into his dresser and them Tim came and assembled Micah's crib. By the time I finished getting their room ready for them to sleep in it was after 5:30. Luckily my friend had already fed the boys and they were having a grand time at her house with her 3 girls and 2 dogs! But I felt bad I had left them there for so long. They were excited to come home to the new house. They had hung out in it on Monday and Tuesday but Ben was excited that this time he got to stay and sleep in his new room. We put them to bed and then kept moving and unpacking. Some friends came over after dinner time to help move. I think they were surprised at how little was left but they were such a great help! They packed up everything in the kitchen that I had left (which was a lot), brought it over and even unpacked it for me! That was such a blessing. They moved all of the food from the fridge and freezer and pantry and unloaded it. They unloaded my stacks of heavy dishes. Then they went through the garage with me and took the miscellaneous stuff to the rooms they needed to go to, which seriously saved my aching body. And they helped Tim with a couple more truck loads of stuff. The biggest disappointment is that our basement couch, which is a guest bed, wont fit down the stairs. So we don't have a guest space down there. We are going to look into getting something smaller that we could get down there, but it's frustrating when you already have something but it's just sitting in your garage. At least, for now, the nursery is a guest room so that our parents have a comfortable space when they come to take care of the boys for us.
I was very nervous about them sharing a room but, so far, it is actually going well. I don't know if it is just because they are both just so tired they don't even notice, or what. We decided to keep Micah in his crib to get him through the transitions. I think it was the right decision because he is sleeping well in the new room with Ben. Ben had been fighting naps, but today he was so tired he actually asked for one. So they are napping in their room together. Once he starts fighting it again I think I'm going to give him "quiet time" in a different room because Micah is still a good napper. Ben loves his new house, his new room, and his new back yard. His new back yard is really fun!
I love the new house, it's coming together. We still have a few things to bring over from the other house tonight and then we are out. We obviously have more to unpack and do but I had enough time to unpack that everything is livable. This weekend we will be doing lots of little projects and hopefully I can start decorating. The thing that is scary for me is that being in the new house means 4 weeks until Maelyn is born. That should be an excited feeling, but each day I get more nervous and scared. She has been doing great at all of her bi-weekly appointments. Continue to pray that she is best case scenario, no less healed by birth! Pray that we continue to get settled and form new routines quickly and that the boys keep doing well sharing a room. We all have little colds, so pray for health, and for my aching body. Moving while being this pregnant is a kind of torture! Continue to pray for Tim and the 2 am feedings. Praise God for all of the help we got moving this week! Thank you to all of our friends who pitched in. You all played an important part in us getting this done.
As much as I did not want to move at all. It feels good to know that we are not going anywhere soon. We can settle in, it is ours, we can make it ours and we can leave on our own timing. That is a huge stress relief. And we are still on our street! Let us know if you need the new number.
Thursday, April 30, 2015
Saturday, April 18, 2015
Latest updates
Micah had a cardiologist appointment last week at Children's. Due to the two factors, Glycogen Storage Disease and his sister having a congenital heart defect, all of his doctors thought it would be a good idea to have his heart checked, even though both have less than a 1% chance of affecting his heart. He had an EKG and echo done. He did surprisingly well through the tests and exam. His least favorite part was probably getting weighed. His EKG and exam did show a murmur so they went ahead with the echo just to be safe. The echo proved that his heart is perfectly healthy. It is a normal murmur that comes and goes throughout childhood.
Later the same afternoon I had an appointment for Maelyn and I. I didn't end up bringing the boys with me. A friend graciously offered to come watch them for me. I was so grateful since Micah had already had an appointment that morning and my appointment went much longer than I had anticipated. It would have been so stressful having them there with me. Everything looks good and she is doing well. She passed the non-stress test and has plenty of fluid. She is very active and still loves to suck on her hands and feet. I got to see her sucking on the ultrasound, it was pretty cool! She is a feisty one. She kicks the monitors during the non-stress tests and wiggles around a lot during ultrasounds. She's getting harder to see well on the ultrasounds because she is getting bigger! And her hands are always on her face, which doesn't help!
We have started packing. Oh, how I hate packing. I hate being in the unorganized state of half packed, half unpacked. But that is probably going to be our life for the next month. It is always the case, that as soon as you get a box packed, you want something out of it. And once you get a box packed you find those few random things that you wanted packed in it but they just didn't fit. So you end up with a box of random miscellaneous items that you don't know how to label. Ben is starting to catch on to packing a little bit. He started "packing his trains" for me. Of course half came back out of the box by the afternoon. I've been stressing over packing and moving (and really everything going on in our life), and Tim's response is but "moving is fun!" Thank you God that he feels that way and that Tim is not easily (if ever) stressed or overwhelmed. If I were not 8 months pregnant and facing everything else, I might be able to get on board with excitement about moving. I feel like I should be excited about moving into our own house, but honestly it's just hard to feel excited about anything lately. I would say I can feel relief. Relief we have a house to move to, relief that the appointments went well, relief that Ben is finally potty trained, but not excited. There are just still too many hurdles in the way.
When we move in 10 days, the boys will be sharing a room. I'm getting more and more nervous about this. I don't know how Micah is going to do with all of the transitions. We tried twice to move him to Ben's room here and it didn't happen. But once we move there is no option, it is happening. I wasn't worried about Ben, he typically does well with transitions, but he has started to have night terrors. If you don't know what night terrors are, he is sleeping and screaming, crying, kicking, flailing, jumping, and there is nothing you can do to comfort him. Touching him and talking to him almost make it worse, he will scream more and kick you away because he is asleep having a nightmare and you can't wake him. And as if night terrors aren't traumatizing enough for a mommy, I couldn't stop thinking, what if Micah were in the room with him? Micah would not be able to sleep though it, and might start screaming too. I was looking on line for info about night terrors and how to prevent them. Of course it's like, eliminate stress, don't move, don't have a baby, don't potty train, don't change routine, keep them well rested (he just stopped taking naps), and (what first came to my mind) stop watching TV. I'd love to eliminate stress and TV from his life but I can't. We haven't watched any TV the last couple days but the more we pack, it is going to need to be a usable distraction. And Ben's poor stress level is going to go up so much more once his sister is born and mommy and daddy are gone.
Once we move, pray for sleep in our house. I'm afraid no one is going to get any sleep. Continue to pray for packing and moving and unpacking. Continue to pray for Maelyn's heart and the pregnancy. Pray for Micah's growth and health and sleep. Pray for Ben's sleep and understanding of the move. Praise God for Tim's amazing optimism and positive attitude. Pray for him as he continues to do the 2 am wake up call for Micah. Pray that I would be more positive and would not worry about what the future holds. Pray that I would be able to be strong for my kids. Pray for planning and timing and all of the unknowns as we get closer to the birth. I'm a planner and it is hard for me to handle all of this unknown and uncertainty.
These last few days I've been reciting over and over to myself, trying to remind myself, (Matthew 6:34) Do not worry about tomorrow, for tomorrow will worry about it's self... But man is it hard.
Later the same afternoon I had an appointment for Maelyn and I. I didn't end up bringing the boys with me. A friend graciously offered to come watch them for me. I was so grateful since Micah had already had an appointment that morning and my appointment went much longer than I had anticipated. It would have been so stressful having them there with me. Everything looks good and she is doing well. She passed the non-stress test and has plenty of fluid. She is very active and still loves to suck on her hands and feet. I got to see her sucking on the ultrasound, it was pretty cool! She is a feisty one. She kicks the monitors during the non-stress tests and wiggles around a lot during ultrasounds. She's getting harder to see well on the ultrasounds because she is getting bigger! And her hands are always on her face, which doesn't help!
We have started packing. Oh, how I hate packing. I hate being in the unorganized state of half packed, half unpacked. But that is probably going to be our life for the next month. It is always the case, that as soon as you get a box packed, you want something out of it. And once you get a box packed you find those few random things that you wanted packed in it but they just didn't fit. So you end up with a box of random miscellaneous items that you don't know how to label. Ben is starting to catch on to packing a little bit. He started "packing his trains" for me. Of course half came back out of the box by the afternoon. I've been stressing over packing and moving (and really everything going on in our life), and Tim's response is but "moving is fun!" Thank you God that he feels that way and that Tim is not easily (if ever) stressed or overwhelmed. If I were not 8 months pregnant and facing everything else, I might be able to get on board with excitement about moving. I feel like I should be excited about moving into our own house, but honestly it's just hard to feel excited about anything lately. I would say I can feel relief. Relief we have a house to move to, relief that the appointments went well, relief that Ben is finally potty trained, but not excited. There are just still too many hurdles in the way.
When we move in 10 days, the boys will be sharing a room. I'm getting more and more nervous about this. I don't know how Micah is going to do with all of the transitions. We tried twice to move him to Ben's room here and it didn't happen. But once we move there is no option, it is happening. I wasn't worried about Ben, he typically does well with transitions, but he has started to have night terrors. If you don't know what night terrors are, he is sleeping and screaming, crying, kicking, flailing, jumping, and there is nothing you can do to comfort him. Touching him and talking to him almost make it worse, he will scream more and kick you away because he is asleep having a nightmare and you can't wake him. And as if night terrors aren't traumatizing enough for a mommy, I couldn't stop thinking, what if Micah were in the room with him? Micah would not be able to sleep though it, and might start screaming too. I was looking on line for info about night terrors and how to prevent them. Of course it's like, eliminate stress, don't move, don't have a baby, don't potty train, don't change routine, keep them well rested (he just stopped taking naps), and (what first came to my mind) stop watching TV. I'd love to eliminate stress and TV from his life but I can't. We haven't watched any TV the last couple days but the more we pack, it is going to need to be a usable distraction. And Ben's poor stress level is going to go up so much more once his sister is born and mommy and daddy are gone.
Once we move, pray for sleep in our house. I'm afraid no one is going to get any sleep. Continue to pray for packing and moving and unpacking. Continue to pray for Maelyn's heart and the pregnancy. Pray for Micah's growth and health and sleep. Pray for Ben's sleep and understanding of the move. Praise God for Tim's amazing optimism and positive attitude. Pray for him as he continues to do the 2 am wake up call for Micah. Pray that I would be more positive and would not worry about what the future holds. Pray that I would be able to be strong for my kids. Pray for planning and timing and all of the unknowns as we get closer to the birth. I'm a planner and it is hard for me to handle all of this unknown and uncertainty.
These last few days I've been reciting over and over to myself, trying to remind myself, (Matthew 6:34) Do not worry about tomorrow, for tomorrow will worry about it's self... But man is it hard.
Tuesday, April 14, 2015
So many appointments!
We had another growth ultrasound last week. Maelyn is growing well! She is measuring at 4 pounds 1 ounce and is in the 35th percentile. I also had my first non-stress test, which she passed. I will now start having to go twice a week for non-stress tests. Luckily my OB appointments and growth ultrasounds can be done in the same appointments as the non-stress tests. The non-stress test consists of me laying back in a recliner, with two straps and monitors around me, for 20 minutes while her heart rate is tracked. It's nice for me to have to sit back and relax in a recliner for 20 minutes, but when I have a 3 year old and 1.5 year old with me, I can't move to wrangle them. We also will have one more cardiologist appointment before she is born. Micah has a cardiologist appointment this week to get an EKG. I'm a little nervous about how he will do. It's going to be a long morning. He will also have one more metabolic appointment before Maelyn is born. That is 16 more doctors appointments, in the next 6 weeks. Then begins the hospital stays, surgeries and bi-weekly appointments for Maelyn...
With all of these appointments, plus moving, our friends have really stepped up and offered to watch the boys a lot! We even got a date afternoon on Sunday! Since moving away from all of our family, 6 years ago, I feel like I've gotten used to it, but it's times like this that I really, really feel it. I wish I could call on family to help babysit or come over to give us time to pack or even be able to spend time just Tim and I, and just for them to get to know my kids. I also know we aren't going to be able to travel at all this year, so we wont get to see family for a while. It is getting harder to be so far from family, even with so much love and support from friends. I want my kids to know their family, and I want to watch my nieces and nephews grow up. I see other families where the little cousins are BFF's and I get a little jealous. Last year I had to resign to the fact that we would only see family, once or twice a year while we live in CO, but now, at least this year, we wont be able to see anyone but our parents. I have to constantly remind myself that we are in the right place. We are where we need to be right now. We are where God wants us. I just wish it were closer to family (and the ocean).
Pray for us on Thursday. Micah has his EKG in the morning and then I will be bringing the boys to my non-stress test in the afternoon. We've also started packing. Pray we (I) do not get too overwhelmed and can get it all done and then moved smoothly. Ben is having a hard time with the packing idea. He doesn't understand the concept, that it needs to stay in the box and then will be unpacked after the move. I think he is afraid it's not going to be unpacked or I am going to give it away. He knows that we are "moving to miss Betti's house" but I don't know how much he understand what that means. Pray for all of the transitions that are coming. We have 2 weeks until we move, and 6 weeks until Maelyn is born. Life is getting crazy and there is no end in sight.
Here are some random pictures of adorableness for you.
With all of these appointments, plus moving, our friends have really stepped up and offered to watch the boys a lot! We even got a date afternoon on Sunday! Since moving away from all of our family, 6 years ago, I feel like I've gotten used to it, but it's times like this that I really, really feel it. I wish I could call on family to help babysit or come over to give us time to pack or even be able to spend time just Tim and I, and just for them to get to know my kids. I also know we aren't going to be able to travel at all this year, so we wont get to see family for a while. It is getting harder to be so far from family, even with so much love and support from friends. I want my kids to know their family, and I want to watch my nieces and nephews grow up. I see other families where the little cousins are BFF's and I get a little jealous. Last year I had to resign to the fact that we would only see family, once or twice a year while we live in CO, but now, at least this year, we wont be able to see anyone but our parents. I have to constantly remind myself that we are in the right place. We are where we need to be right now. We are where God wants us. I just wish it were closer to family (and the ocean).
Pray for us on Thursday. Micah has his EKG in the morning and then I will be bringing the boys to my non-stress test in the afternoon. We've also started packing. Pray we (I) do not get too overwhelmed and can get it all done and then moved smoothly. Ben is having a hard time with the packing idea. He doesn't understand the concept, that it needs to stay in the box and then will be unpacked after the move. I think he is afraid it's not going to be unpacked or I am going to give it away. He knows that we are "moving to miss Betti's house" but I don't know how much he understand what that means. Pray for all of the transitions that are coming. We have 2 weeks until we move, and 6 weeks until Maelyn is born. Life is getting crazy and there is no end in sight.
Here are some random pictures of adorableness for you.
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| Easter sweaters |
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| The slide is their new favorite thing |
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| Watching the fork lift and truck outside |
Friday, April 10, 2015
Glycogen Storage update
I forgot to update about Micah earlier this week. The boys had a well check last week. They usually do really well at the pediatricians office, but they were more than a hand full this time, to say the least. Ben refused everything! He was being a true 3 year old. Micah did ok, but he really doesn't like doctors in general. From the exams she could get out of them, they both look good. Micah is growing but he is still not up to where they want to see him. The only thing that really came up is that she heard a slight heart murmur, which she said normally wouldn't concern her but, since he has GSD and now a sister with a heart disease, she wants him to get an EKG done. We are not thrilled about this. It is another appointment at the Children's Hospital, another co-pay, another hard morning for Micah. But we are scheduled for next week to do it, and make sure he is fine.
I talked to Micah's metabolic/genetic doctor this week about his lab results and my genetic testing results. Micah's tests (the ones that took 4 tries to get the blood for) came back good but still not at normal levels. His doctor said the goal is for his levels to be in the normal range but he is not sure if that is possible for Micah. They are glad that there was a slight drop, but they are hoping to see it continue to slowly improve over time. As those blood levels are slowly dropping, he should also start to catch up to his normal growth curve and his liver should go down in size. They are hoping that his growth will catch up to normal by his second birthday, in six months. They are sure that the 2 am corn starch and the high protein diet is what is making him better. They want to see him one more time before Maelyn is born to check his growth and liver, and they know we wont be able to bring him for a while after she is born.
They increased the 2 am dose again, so now he is basically drinking a milk paste at night... The 2 am feedings are getting harder. He is not drinking it as well, Tim is starting to sleep through the alarm/doing it and the last time I tried, Micah screamed for mommy and Tim had to go in anyway to lay him down again. Bless my husband! He is a trooper, getting up every night and going right back to sleep. In less than 3 weeks, the boys are going to be sharing a room and Micah is going to move to a big boy bed... So the 2 am thing might get even harder.
My genetic testing showed that I am a carrier for the genetic mutation that Micah has. This means that my mom is a carrier and her mom was and her mom was, ect... Yet Micah is the first male in the family to have the disease, but I think I am the first to have more than one boy. Our genetics doctor wants to test my sister so see if she is a carrier. I am not sure what my sister wants to do, but if she is a carrier, her daughter might want to get tested one day. The males in the family don't have to worry about it. Even if Micah has a son one day, he doesn't have to worry, but if Micah has a daughter, she will also be a carrier. Doesn't this bring you back to high school science class?
It is also starting to get harder to keep sugar away from Micah... Between potty training and Easter, Ben (and I) have had a lot of candy and Micah totally notices now. I used to be able to trick him or keep it out of his sight, but he is getting smarter! And Ben, the sweet brother he is, wants to share. Today Ben went and got himself an M&M because he peed on the potty, and he let Micah pick one out too. At the Easter egg hunt I brought Micah his own eggs with stickers and gold fish, but that just isn't going to work next year. I know we are going to have to get rid of cookies and candy as a family, but what do I do at parties and holidays? And I should specify, he also can't really have "sugar free" candies either because he shouldn't have the artificial sweeteners either. The only "safe" sugar is Stevia. I am glad that it is not a huge deal if he has one M&M. The dietitian said he can have a treat every now and then, but his sugar intake should really be limited to his dairy and fruit needs. He is only supposed to have a certain number of grams of sugar per meal/day. Honestly, I don't keep that close of track to his actual sugar intake, but I know that adding one candy is going to limit what he should have the rest of the day. And I should probably keep track of that, as he gets older and pickier!
Over all Micah is doing great! We feel like he has changed so much over the last couple months, since starting the corn starch. He is so much happier, and he has a ton more energy! He has started walking and climbing everything. He has finally gotten more hair! He tries so hard to keep up with Ben and is starting to hold his own against him. They are starting to become rough and tumble boys. Micah started to climb up the slide and go down it by himself (with someone there to catch him) this past weekend! (Ben didn't do that until this past year!) He loves to climb and play chase and peek a boo and "wrestle" aka roll around giggling. He is still pretty sensitive though. If he falls down or something happens he doesn't like he will scream your ear off for about a half hour. And he is still a huge momma's boy.
I talked to Micah's metabolic/genetic doctor this week about his lab results and my genetic testing results. Micah's tests (the ones that took 4 tries to get the blood for) came back good but still not at normal levels. His doctor said the goal is for his levels to be in the normal range but he is not sure if that is possible for Micah. They are glad that there was a slight drop, but they are hoping to see it continue to slowly improve over time. As those blood levels are slowly dropping, he should also start to catch up to his normal growth curve and his liver should go down in size. They are hoping that his growth will catch up to normal by his second birthday, in six months. They are sure that the 2 am corn starch and the high protein diet is what is making him better. They want to see him one more time before Maelyn is born to check his growth and liver, and they know we wont be able to bring him for a while after she is born.
They increased the 2 am dose again, so now he is basically drinking a milk paste at night... The 2 am feedings are getting harder. He is not drinking it as well, Tim is starting to sleep through the alarm/doing it and the last time I tried, Micah screamed for mommy and Tim had to go in anyway to lay him down again. Bless my husband! He is a trooper, getting up every night and going right back to sleep. In less than 3 weeks, the boys are going to be sharing a room and Micah is going to move to a big boy bed... So the 2 am thing might get even harder.
My genetic testing showed that I am a carrier for the genetic mutation that Micah has. This means that my mom is a carrier and her mom was and her mom was, ect... Yet Micah is the first male in the family to have the disease, but I think I am the first to have more than one boy. Our genetics doctor wants to test my sister so see if she is a carrier. I am not sure what my sister wants to do, but if she is a carrier, her daughter might want to get tested one day. The males in the family don't have to worry about it. Even if Micah has a son one day, he doesn't have to worry, but if Micah has a daughter, she will also be a carrier. Doesn't this bring you back to high school science class?
It is also starting to get harder to keep sugar away from Micah... Between potty training and Easter, Ben (and I) have had a lot of candy and Micah totally notices now. I used to be able to trick him or keep it out of his sight, but he is getting smarter! And Ben, the sweet brother he is, wants to share. Today Ben went and got himself an M&M because he peed on the potty, and he let Micah pick one out too. At the Easter egg hunt I brought Micah his own eggs with stickers and gold fish, but that just isn't going to work next year. I know we are going to have to get rid of cookies and candy as a family, but what do I do at parties and holidays? And I should specify, he also can't really have "sugar free" candies either because he shouldn't have the artificial sweeteners either. The only "safe" sugar is Stevia. I am glad that it is not a huge deal if he has one M&M. The dietitian said he can have a treat every now and then, but his sugar intake should really be limited to his dairy and fruit needs. He is only supposed to have a certain number of grams of sugar per meal/day. Honestly, I don't keep that close of track to his actual sugar intake, but I know that adding one candy is going to limit what he should have the rest of the day. And I should probably keep track of that, as he gets older and pickier!
Over all Micah is doing great! We feel like he has changed so much over the last couple months, since starting the corn starch. He is so much happier, and he has a ton more energy! He has started walking and climbing everything. He has finally gotten more hair! He tries so hard to keep up with Ben and is starting to hold his own against him. They are starting to become rough and tumble boys. Micah started to climb up the slide and go down it by himself (with someone there to catch him) this past weekend! (Ben didn't do that until this past year!) He loves to climb and play chase and peek a boo and "wrestle" aka roll around giggling. He is still pretty sensitive though. If he falls down or something happens he doesn't like he will scream your ear off for about a half hour. And he is still a huge momma's boy.
Thursday, April 9, 2015
Best case scenarios
Mae is going to be born in May. When we named her we thought she was going to be born in June. I was thinking if we scheduled an induction it would be for June 1, but it looks like she's coming either May 29th or 30th! We need to wait until she is 39 weeks, but they don't want to wait any later than 39 weeks because of her risk of still birth. Since the children's hospital doesn't do a ton of births, they don't like to schedule inductions too close together, which is why we are not sure yet if it will be the 29th or 30th.
We had another echo yesterday. She still has double inlet left ventricle with dextrocardia, but from what they can tell she is best case scenario for that diagnosis. They had been concerned about the growth of her pulmonary artery and branches, but they are looking good. All of her valves look good. We will have one more echo before she is born but they wont know what kind of first surgery she will need until she is a couple days old. We met with two cardiologist and a surgeon. They all gave really helpful information and their best guess as to what is to come. But there is no planning with this kind of diagnosis. It will be one day at a time, seeing how she does, until she shows us what she needs. There is a chance she will need either a shunt or a restriction band put on her heart in her first couple weeks, but we wont know until we know. If everything is best case scenario and she does really well we might be able to bring her home about a week after birth and wait a few months until she will need the Glenn surgery. She will need the Glenn surgery sometime between 2-6 months of age. The longer we can put off any surgeries, the easier it will be. Once she recovers from her Glenn surgery she should be fine until she will need the Fontan surgery during her second year. After the Fontan surgery is it a life time of follow ups, palliative care and praying that she does well. There are so many "ifs" and things that could go wrong at any point in her life, I need to remind myself that we will just be blessed to have her life at all.
We are very glad that we are here, at this hospital. They have a group of doctors who have taken a special interest in single ventricle diagnosis and have started two clinics specifically for kids with single ventricle diagnosis, such as double inlet left ventricle. They told us that there are a couple kids in the program already with very similar hearts to Maelyn's, and they are doing very well. It is good to hear about all of the experience the doctors have already had with this diagnosis and all of the research they are doing. It is a very scary diagnosis. There is not a whole lot of information about quality of life or lifespan. But hopefully there will be much more information and medical advances by the time Maelyn reaches different milestones, thanks to these clinics. We just need to keep praying and being optimistic.
One thing we discussed is how living at higher altitudes can have an adverse affect on children with this heart. Of course, I am like, great, we will move back east! Some people do fine and don't seem to notice the altitude, but others struggle and do much better at sea level. So they said if she doesn't seem to be doing well at some point they might send us to sea level for a while to see if she does better. We discussed other hospitals on the east coast that are also investing in the single ventricle diagnosis and they said when we are ready to move they would gladly get us connected with those programs. That was great for me to hear, even though we know we will be staying in Denver for a few years.
I am still terrified for her first 6 months of life, but I trust that we are in good hands at this hospital and that God has a plan for Maelyn. Pray for an easy induction and best case scenarios for her heart and surgeries. Continue to pray for healing and preparing us and the boys for what's to come.
We move in less than 3 weeks. We have a lot of packing to do and I am exhausted. Pray we get it all done and that the actual move goes fast and smoothly.
We had another echo yesterday. She still has double inlet left ventricle with dextrocardia, but from what they can tell she is best case scenario for that diagnosis. They had been concerned about the growth of her pulmonary artery and branches, but they are looking good. All of her valves look good. We will have one more echo before she is born but they wont know what kind of first surgery she will need until she is a couple days old. We met with two cardiologist and a surgeon. They all gave really helpful information and their best guess as to what is to come. But there is no planning with this kind of diagnosis. It will be one day at a time, seeing how she does, until she shows us what she needs. There is a chance she will need either a shunt or a restriction band put on her heart in her first couple weeks, but we wont know until we know. If everything is best case scenario and she does really well we might be able to bring her home about a week after birth and wait a few months until she will need the Glenn surgery. She will need the Glenn surgery sometime between 2-6 months of age. The longer we can put off any surgeries, the easier it will be. Once she recovers from her Glenn surgery she should be fine until she will need the Fontan surgery during her second year. After the Fontan surgery is it a life time of follow ups, palliative care and praying that she does well. There are so many "ifs" and things that could go wrong at any point in her life, I need to remind myself that we will just be blessed to have her life at all.
We are very glad that we are here, at this hospital. They have a group of doctors who have taken a special interest in single ventricle diagnosis and have started two clinics specifically for kids with single ventricle diagnosis, such as double inlet left ventricle. They told us that there are a couple kids in the program already with very similar hearts to Maelyn's, and they are doing very well. It is good to hear about all of the experience the doctors have already had with this diagnosis and all of the research they are doing. It is a very scary diagnosis. There is not a whole lot of information about quality of life or lifespan. But hopefully there will be much more information and medical advances by the time Maelyn reaches different milestones, thanks to these clinics. We just need to keep praying and being optimistic.
One thing we discussed is how living at higher altitudes can have an adverse affect on children with this heart. Of course, I am like, great, we will move back east! Some people do fine and don't seem to notice the altitude, but others struggle and do much better at sea level. So they said if she doesn't seem to be doing well at some point they might send us to sea level for a while to see if she does better. We discussed other hospitals on the east coast that are also investing in the single ventricle diagnosis and they said when we are ready to move they would gladly get us connected with those programs. That was great for me to hear, even though we know we will be staying in Denver for a few years.
I am still terrified for her first 6 months of life, but I trust that we are in good hands at this hospital and that God has a plan for Maelyn. Pray for an easy induction and best case scenarios for her heart and surgeries. Continue to pray for healing and preparing us and the boys for what's to come.
We move in less than 3 weeks. We have a lot of packing to do and I am exhausted. Pray we get it all done and that the actual move goes fast and smoothly.
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