Cheers to the New Year

I know I haven't posted anything in awhile. I've tried a couple of times but didn't really know what to say. Getting "back to normal" has actually been much harder of a transition than I thought it would be. Part of it is that I now have three kids instead of just two and never really figured out how to do normal things with three, because we couldn't really do things. Part of it is also that the holidays are crazy for everyone. But another reason is that our lives kind of stopped for a year but everyone else moved on, so I just feel kind of behind and out of the loop. That being said, I also feel like, 2 years ago we moved here and it took a lot of energy to get connected and involved and then last winter we had to get un-involved and lost connections. Now that we are "back" I don't have the energy to get back involved and build new connections. So the normal I was looking for just isn't there and I need to find the motivation to start over. I am hoping that the new year will do that for us all.

First attempt at grocery shopping with 3 kids by myself.
I learned not to do this again after a snow storm.

So, 2016 here we come! I'm praying that God has lots of good things in store for us this year. Praying for health. Praying for less stress. Praying for (hopefully several) vacations. Praying for relationships, new and old. I am looking into starting my own Norwex business and sending Ben to part time preschool. Tim is really enjoying his new position at SMA as product manager and is looking into getting back on to a worship band at our church. We are trying to join a new community group while we process starting up our own again. I am looking forward to MOPS and Bible study starting up again in January, and hoping I can adjust to taking all three kiddos with me. Ben is already looking forward to his birthday (still 3 months away). I just realized that I am/can look forward to Maelyn's first birthday (she only just turned 7 months). I'm also try to plan our big summer vacation to NY and trying to convince Tim that we also need a family beach vacation. We've also decided that we are going to make a CO bucket list and actually do things this summer.

Riding the train with Santa.
Georgetown Loop, check!

Even with a weird transitional phase and all of the looking forward, we had really great holidays. We were invited to our friends house for thanksgiving with a bunch of other friends who didn't have family in town. It was fun - delicious - craziness with 8 adults and 10 kids. It was great to feel so welcome and like we have a CO family. Some of Tim's family came to stay with us for Christmas and New Years. We had an abundant Christmas and they are helping us check off some of our CO bucket list.

Merry Christmas

Finally back to normal

Micah had his metabolic appointment this past week. He has been going every 3 months. This was his one year anniversary of his diagnosis appointment. So he had an abdominal ultrasound along with his usual blood work. His doctors think he is looking great! His belly/liver is getting smaller. His blood work keeps looking a little bit better every time. He is finally just at the top of the normal range for his triglycerides! Praise God. The 'top of the normal range' means 100. Last year he was almost 800. His liver function levels are still slightly high but they are fine, I guess. He did have one test that was super high but the doctor didn't say anything about it and I guess isn't concerned. We are checking his ketones over night again to see if his corn starch dose needs to be adjusted or not, since he is growing! He is almost back to his normal growth curve. I think he is still a little shorter but the doctors said that he is back on track and normal. Since everything is looking so good, he does not need to go back for 6 months! Maelyn also does not need to go back for 6 months either, so assuming we have no emergencies or things come up, we will not be back to the hospital again until spring! Hallelujah! I love the hospital here, because they are so good, but I hate going so much. We were there just about every week for about 10 months. And now we get 6 months off! Ben was disappointed when I told him. He likes going (because the appointments are never for him), so he started to fake cough and tell me that he needs to go to the hospital. I said no way! All my babies are healthy and we are keeping it that way!

So, we are officially 'back to normal'. (With the exception of 2 am corn starch for Micah.) All three kids are healthy and appointment free, we are in a house that we are not leaving, I have a car that should not break down, and Tim's job is going well! I'm looking forward to normal stuff and trying to get back to a boring and uneventful life! For instance, we are starting solid foods with Maelyn so I've been working on making and freezing lots of baby food for her. We are also trying to get her rolling and sitting up since she will be 6 months old soon! Micah's starting to talk about using the potty and learning how to dress himself. We are talking about part time preschool for Ben. He is learning to write and spell already by himself! And I am psyched for the holidays. We are actually going to have Thanksgiving with friends. I'm planning for what to cook/bake for that (simple joys). The boys and I have already decorated the whole house for Christmas. We are planning on going to get a real Christmas tree this week. I've already overly Christmas shopped, and am excitedly planning for having family come to our home for Christmas! I'm just happy to have normal back, to feel secure in our lives, but I still hug my babies extra close everyday, and praise God for giving us this.

6 weeks post op

We finally made it to the 6 week post op mile stone. She is officially recovered! We can officially get back to normal, and treat her like a normal baby. We have sort of tested out solid foods, but she is not a fan. We have just started tummy time again, which she basically just lays there, no rolling or pushing up, but she's content. She has tried the jumper a couple times but doesn't really like it. She is starting to sit independently a little bit, which is amazing and exciting. For the last 2 weeks we've been easing into this normalcy. We've been trying to go out and having people over. We went to our churches Halloween festivities and I took the boys trick or treating on our street while Tim and Mae handed out candy at our house. We've had a few play dates. This past weekend we went to church and did child dedication for all three kiddos. I took the kids out of the house by myself for the first time since surgery. We went to Target. You would have thought we were at an amusement park, the boys had so much fun just being out. Micah's going, "ohhh look at all the colors!" and Ben is going, "and that's a Christmas tree, and that's a Christmas pillow, and that's a Christmas cup..." He is always excited for Christmas, so now that it is actually approaching, he's super excited. Now that Maelyn is healthy, we can all get excited and ready for the holidays. Tim and I have been looking forward to Christmas for a long time, knowing that if Maelyn made it, she would be fine by Christmas, and here we are, and it's not even Thanksgiving yet! We may have a Christmas tree up already, but I am still looking forward to Thanksgiving. This year, thanksgiving will just be our little family of 5, but we have so much to be thankful for, it might just be the best Thanksgiving yet. Now that Maelyn and Micah are doing so well, and stress is low, I've been able to really focus on all of our blessings and just praising God for answered prayer and for life. Just look at all of this life we have to be so thankful for.

Halloween night

The boys Christmas tree went up 11/1

Her pretty dedication dress

The first big snow fall!

I have no words for this one, just, love.

4 weeks post op

Thank you all for praying for us so much! I know Maelyn has been doing well because of your prayers. 

5 Months old

Today is 4 weeks since Maelyn had her surgery. It has been a really long month, but she has been doing really well. Other than being on oxygen she has been a pretty normal 5 month old baby. She had a good week or so of sleep regression and she is teething like crazy. She has been nursing and growing well, and is back to sleeping well. Luckily her doctor agreed with how well she is doing and is letting her come off her oxygen and lasix! And we do not have to go back to see him for 6 months! (I just have to monitor her oxygen for a while and make sure she can stay in the 80's.) I am so happy to have no cardiac appointments scheduled for her. That hasn't happened since January. And I am so happy to not be lugging the oxygen tank around with me and watching out for the tubing every second! We are so close to getting back to normal life! She has 2 more weeks of 'recovery', where she can't get sick and can't be lifted under her arms or do tummy time, but we will hopefully start getting out more. Since 2 weeks before surgery we have not really gone any where or done anything. We haven't been to church in 6 weeks. While my parents were here we did a couple things outside, like pumpkin picking, but since they left, I haven't really left the house. Luckily this weekend is Halloween! We are going to trunk or treat at church tomorrow and trick or treating on Saturday (thankfully without an oxygen tank in tow).  Ben has been asking to go places and see friends so I am excited to get the boys back to normal too. 

Brothers!

Please pray for continued healing and great recovery for Maelyn. For continued normal development, hitting milestones and health. Pray for getting back to normalcy and for getting out of the house. Pray for sleep in our house. Even though things are going so well, pray for a positive attitude for me and energy. It's been a hard month (year).

2 weeks post surgery

Two weeks post bidirectional glenn, open heart surgery. I am amazed at how well Maelyn is doing. She is still on oxygen and lasics for a while to help with healing from the surgery. We are still giving her Motrin, but only twice a day to help with the discomfort caused by her being moved around during the day. Giving her the oral medications is getting much easier. She is typically her happy adorable self and she is pretty much back on her daily schedule. We have had a few nights were she was up a lot, ok most nights she is up a lot. I don't know if she is just needing to nurse more to make up for the few days she lost or if she is just needing the extra comfort. She just started taking a pacifier and bottle again (sometimes). She's actually more set into her schedule. The days that we have done things that have messed with her morning nap have been the harder days. The worst days have been the doctors appointments. I think she has learned that the hospital is not a fun place so she just cries through the whole thing now. It's hard to tell what of her fussiness is from surgery and what is just her being a 4.5 month old baby. I think she is teething and hopefully going through a growth spurt. 

Her last appointment was Monday. She cried through most of it so it was hard for them to assess her. I had to assure them that she is much happier at home and seems fine at home, other than not liking the oxygen tube. They lowered the amount of oxygen she was getting, which I think helps a little bit. They noticed that her heart rate was low for her and something (I'm not sure what) looked slightly off on the EKG. So I need to monitor her heart rate a little bit, which has been fine at home. They were also a little bit concerned about her weight gain, but trusted me that she is eating well. I am not concerned about her weight at all, I think she was still loosing fluids from surgery and catching up from missing two days of  not eating at all. Her incisions look good. All of the external stitches are out and the glue is off. The bruising has pretty much gone away. It needs a couple more weeks to heal on the inside and for the scabs to fall off. But I am amazed at how well it is healing and how little she seems to notice it at all. She still has other bruises and scabs from all of the IV placements. She also had a couple rashes from the tape they had on her but those are gone and now just healing. The only other thing is the stickers on her cheeks that hold the oxygen on. I move them every few days but her cheeks are starting to get a little irritated. The oxygen tubes also irritate her nose but that seems to be getting better. At the appointment on Monday we saw another little girl who was probably two and a half who also had oxygen on. She called the cannulas 'owies' and pointed out that Maelyn had owies too. It was really cute but really sad. I'm sure they do cause owies. 

I am feeling ready to get back to normal. I want to get out of the house and get the kids playing with their friends again. We've been shut-ins since a couple weeks before surgery because we can risk getting any bugs and we're getting lonely. I'm hoping to have a few play dates next week but we will still be limiting our exposure to the outside world for a couple more weeks. Also, sometimes the oxygen tank is like having a 4th kid, and that will be sticking with us for a couple more weeks too. Once we get her off the oxygen, and loose the tank, she will also be on the tail end of recovery and be able to get out more. Her next appointment is in 2 weeks. 

Please pray for Maelyn's heart rate and function. Pray for her nursing and weight gain. Pray for her discomfort and healing. Pray for nights. I am feeling drained and just done with all of this medical stuff, so just pray for strength and energy and refreshment and a positive attitude. My parents left today, so I am on my own with all three kids during the day again. So far it's been a good day, but pray for us! 

4 days post surgery

We are home! We were told to expect to be in the hospital between 4 - 10 days. While I was packing to go, I was being optimistic and only packed for 4 days. Once we got there I started to worry and started to wonder if I should have packed more. But God was with us, and we got home in 4 days. It felt like she would take three steps forward and one step back, and I would get upset, but those three steps forward made up for so much that she recovered very fast. And every time we put out a prayer request, you prayer warriors were there for us, and He answered! I thought we would need to stay one more night but her doctor was the one on the floor and he helped us get discharged sooner. He knows her, he knows us and he knows that we live close enough that we could easily bring her back if something were to come up. I even thought we wouldn't get out until after dinner time but this time we knew what to ask the nurses and doctors and they were on top of it and got us out around 3 pm!

Getting very bored in her room.

Pre-op was hard. Handing over a seemingly healthy and happy baby to go through open heart surgery, with all of the possibilities ahead of us was pretty horrible. Watching her recover the first couple days was hard too. She was (seemed) perfect before we handed her over. Seeing her awake, but not really there was bizarre and sad. And being a mommy and not being able to comfort your baby is the worst feeling ever. It's all just feelings you hope you'll never experience and then when it's over you're relived and then there is that feeling of 'we did it, it's over and we shouldn't have to go through it again'. Unfortunately, we will have to go through it again. But I keep reminding myself that we have a few years, and she will be older and it will be different.

Driving home!

It feels good to be home. Our own beds are just the best. I will say, staying at the hospital this time was much easier because of the fact that I had not just given birth, and we had a shower. We were also very blessed by many people with food while we were there. That was huge too. We didn't have to think about eating or worry about spending money to eat 3 times a day. Biggest thank yous to those who sent care packages with snacks and goodies, and to those who ordered us meals while we were there! I am glad to be home with the boys but I am very glad my parents are still here to help. I am still trying to figure out how to care for her from home. She is still on an oxygen, so every time she moves, the tank has to come too. Her tanks also need to be switched out every twelve hours and refilled. She still hates taking her meds. She gets them twice a day, plus tylenol and motrin as needed, which are her least favorite. We are still trying to figure out the best way to get them in her. She still wont take a pacifier or bottle, but is nursing ok. She is still sore but actually seems to be doing well with the pain, even when we skip some tylenol and motrin. But there is something about being home that makes it so much better.

Hanging out at home.

Praise God for hearing our cries and answering our prayers. Thank you God for being our Sustainer. Praise God for creating little bodies that are able to heal so quickly. Thank you God for Jesus, who brings us so close to you and who brings us your Spirit at all times.

Pre/Post Surgery Pictures

Waiting to go into the OR

This is when we first got to see her after. Still asleep and on the ventilator.
The stickers on her head measure oxygen consumption in the brain. The big tube in her nose is the ventilator. The small tube is the gastric tube. She has 4 IV lines, a catheter, a temperature probe, a pluse ox and the heart rate monitors stuck to her. The red tube in the middle is the chest tube, below the incision bandaid.

Close up, still asleep.

A wake and breathing on her own. She was switched to oxygen through the nose.
She was very fussy so we were trying to comfort her without picking her up.

She has slowly been having lines and wires removed. She has already gotten rid of the two tubes in her nose (replaced by oxygen), the two head stickers, and two IV lines (technically three but one got put back in because she kicked it out). By tomorrow we hope to be down to just the monitors and oxygen and then be move to the CPCU.

She is still very upset and on a lot of pain medications. She is eating, but not great. We are hoping both of these things improve a lot by tomorrow. When I can get a picture of her not crying I'll post a more recent one.

Recovery, day 1

Surgery went great. It was a little faster than expected. There were no surprises or complications. The only thing that came up was, her blood pressure needed to be controlled with medication. We handed her off at 7:30 am and got to go back to her room with her around 2 pm. Everyone had told us she looked great and was doing really well. Once we saw her she actually looked better than I expected her to look. The breathing tube was through her nose and there was a gastric tube in her nose. To me the nose doesn't look as uncomfortable as through the mouth. She wasn't as swollen or puffy as I was preparing myself for. Her color looked good. She ended up only needing one chest tube, which does not look as bad as I imagined either. She had 4 IVs, one in her neck, one in her arm, one in her leg and one in her ankle. She also had a catheter, temperature probe, pulse ox, blood pressure cuff, heart rate monitor and big stickers on her head to monitor oxygen consumption in her brain. Oh and one big long bandaid on her chest, but honestly it is the last thing I noticed.

She didn't wake up until closer to 5 pm. Once she showed that she could breath on her own they were able to take her breathing tube and gastric tubes out of her nose. She was then given an oxygen cannula. Once the breathing tube was out she was still very fussy. Nothing was soothing her. She was already on every medication possible, she wasn't allowed to eat yet and we couldn't pick her up. When she would get really fussy her stats would drop so eventually we were given the ok to hold her. Two nurses helped get her into Tim's arms in a chair. She calmed right down but Tim was stuck. I, the loving wife and mother, hand fed him his guacamole burger and fries. It was pretty entertaining. She slept in his arms from 6:30-9:30. At 9:30 she was finally allowed to eat. We needed to start with pedialite, which she downed, then we have her breast milk from a bottle, which she downed. Once she ate fine she was able to take some different oral medications which really seemed to have helped her pain. Getting her back into bed was a mess but we eventually got her untangled and swaddled and to sleep in the crib. We were able to get a parent "sleep room" (aka a random tiny room with a pull out couch and a bathroom), so I was able to get a good nights sleep and a shower this morning. Tim stayed in her room. She was up for bottles twice durning the night. Right before I came back down this morning they removed her neck IV and the catheter, which she hated, and then she fell back asleep.

We are hoping to start to breast feed again today and try to start to get her back onto some sort of schedule, at least day vs night since she slept the entire day yesterday. They are pretty sure that the reason she was so fussy is that she is having the "Glenn headache". When kids have this Glenn surgery, it changes the blood flow and pressures in the top half of the body causing headaches. No one is sure how long it will last or how she will handle them. I've heard that the worst of it should be while we are at the hospital, it should get better in a couple weeks but could last a couple months.

Over all things are going really well. Please pray for continued healing, no infections, pray against swelling and headaches. Pray for feeding and scheduled to get back on track. Pray for rest and energy.   Pray for thing to go so well that we can go home in a couple days. We are missing the boys but they are having lots of fun with their nana and g-pa. Pray for them too.

I've been going back and forth about posting her post-op picture on here or not. I think I will because it's not too graphic or gory and I think it could be helpful for other parents about to send their child into surgery to see before hand. However, I don't know how to from my phone. I've never posted on here from my phone before (sorry if there are lots of auto correct errors)!

Surgery in the morning

I'm posting because I feel like I need to, but I don't really know what to say. We had her pre-op appointments this morning. She had blood work done, which didn't go smoothly, but results were good. She had a chest xray, which went well. And then we saw 3 different nurses, the surgeon, the anesthesiologist, and the research assistant. It was a long morning. Maelyn was tired but did well.

It was just hard because it's real. I can't ignore it anymore. I did think I would cry but I started to cry after Tim signed all of the consents. It felt like we were literally signing her life away. The surgeon went over all of the risks/complications. I knew most of them but it is always hard to hear. He also emphasized the low percent chance of them happening but that didn't make me feel better. We had a 1% chance of getting a CHD, our family has two, one in a million diagnosis, so telling me that there is 1-2 % chance of such and such complication, still doesn't sound like good odds to me. It's also hard to hear all of the risks/complications and even what to expect to see after surgery when she looks and seems so good right now. She seems so healthy and she is so happy, she will not be either of those things for a long time.

Tonight I have to give her a special bath to prep her for tomorrow. I'll be getting up at 4 am to nurse her for the last time and then get ready to head to the hospital for an unknown amount of time. We check in at 6 and surgery is at 7:30. There is a lot of prep for them to do before they cut, so that will probably happen around 8:30. Surgery should take about 2 hours, then closing and moving her to the CICU, then making sure she's stable, so it will be a few hours after that that we will be able to see her. Even when we do get to see her she will still be sedated and she will have a breathing tube, 2 chest tubes, and 3 different IV lines. Plus all the wires to the monitors (heart rate, blood pressure and pulse ox).

Risks/complications to pray against: death, neurological damage, brain damage, her body rejecting the procedure, swelling and fluid retention. Pray for her hearts ability to heal and beat properly after. (There is a risk that she might need a pace maker depending on how things go.) Pray for her kidneys and liver to function well, pray for her lymphatic system and her ability to process fats, pray for the pressure in her lungs, pray for the pressure in her head, pray against clots and infections (from both the blood transfusion and the multiple incisions). Pray against the need for extra surgeries or admissions due to complications. Pray for her ability to handle all of the different medicines she will be given and against reactions.

I feel like I have infinite prayer requests. Pray for Maelyn to still be Maelyn afterward. That's my biggest prayer right now. Pray for fast healing, an easy hospital stay, and a smooth transition home. Pray for nursing and sleeping and development. Pray against head aches. Pray for the boys and my parents as they are home without us. Pray for our ability to handle all of the medical stuff. Pray for peace, comfort and strength. Pray for God's plans and will.

The first surgery

As I've been starting to prepare for surgery I had this moment that I realized that, it feels like I am the one that is going to have the surgery. For a couple of reasons, one because I am nursing her I am her food-lifeline, so I can't leave the hospital until she does and I will be the one with her when she comes home, 'nursing' her back to health so I will be out of commission as long as she is. But also as a mommy she is such a piece of me that my heart, my chest, aches when I think about it, so I try not to think about it. One night this week, I was in bed falling asleep and for some reason an image popped into my head of her on the operating table while they were sawing open her breast bone and opening her chest. It was horrifying. I have been trying not to think about it so I have no idea why that popped into my head. I thought about it a lot before she was born, but I didn't know her the same then. Now that she is here, I can't think about it. Somewhere on youtube there is a video of the actually surgery being preformed. I find it really interesting and would totally watch it, but I can't until her surgeries are all over with because I will picture it being her. These are the problems of being a visual person.

Over the last few months I've been wondering, how do I even prepare for open heart surgery? Sometimes I've simply ignored it and pretended it isn't going to happen. Other times I've held her close, soaked her in and prayed over her. I've cleaned, a lot. (When I get stressed out I impulse clean.) But now that it is less than a week away I am realizing I need to do things to get ready. I need to logistically prepare, not mentally. I'm just going to skip the mentally preparing for once. We've had several doctors appointments this week. I've been baking goodies to bring to the hospital and taking lots of pictures of Maelyn (as usual). We are having family photo's taken this weekend, since we still don't have any pictures of all 5 of us. I'm trying to put together a worship play list and a scripture book for myself for easy access to verses to focus on during and after surgery. We need to clean the house/basement and set up a guest room to get ready for my parents to stay here with the boys while we are gone. We also want to get the dog groomed before we leave him with my parents because he's in desperate need. I'm starting to think about packing and what we will need to stay at the hospital for a week. I'm not really preparing the boys for anything other than getting them excited for their nana and g-pa to come. So far the hospital and all of the medical stuff has been a pretty positive experience for them, so I want it to stay that way. I have a couple little things for them to get while we are gone to help entertain them, plus Micah just got birthday presents. We have one full day with my parents here before we head to the hospital so I want to have a little party to celebrate g-pa's birthday, Micah's birthday, Ben's 1/2 birhtday and Maelyn's 4 month birthday.

Maelyn is 4 months old. She is over 24 inches and 14 and a half pounds. She is very social and happy and snuggly. She is still up to nurse once a night and is just starting to get into a nap routine. She will only take good naps in her crib. I haven't been worried about getting her in to a routine because I know surgery will mess that up. She isn't rolling or sitting and she hates when I try to make her stand or use her legs, but again I'm not working on those things with her because surgery is going to delay those things anyway. Most days, she is just a normal baby. But when I think about all we have been through and all that is to come, it is over whelming. She is a blessing and a miracle. Every day with her is a blessing and proof of God's incredible power and plans. He knit her together. He knew her and had/has plans for her. He has kept her alive and He has given her these incredible 4 months of normalcy. I trust that He has her days numbered and that they are going to be many.

    

This months birthday pictures were purposefully done shirtless to document her pre-scars.

So many prayer requests with surgery approaching:

For me and Tim, peace, comfort, strength and energy. That we wouldn't think too much. That we would stay positive.
For the boys, health and happiness. That they wouldn't even notice we are gone and that they are really good for my parents. 
For my parents, health and energy!
For Maelyn, health, strength and healing. Protection during surgery. Pray against infection. Pray against complications. Pray against headaches post surgery. Pray against swelling and fluid retention. Pray for nursing and her ability to process breast milk post surgery. I know it is superficial but pray for her many scars she will have post surgery. Pray for her, that she would still be her after.
For her doctors, Adel and Alison.
For her surgeon, Max, and her anesthesiologist and other nurses.

Congenital Heart Disease

One year ago, Tim was in Germany, Micah had just turned one (Ben, two and a half) and I confirmed that I was pregnant. I already knew because I was already feeling a little sick. So, I also already knew she was a girl. The thing I didn't know was that at that point her heart had, most likely, already formed incorrectly. The heart is the first organ that forms and starts to beat by 6 weeks. Around 4 weeks, when home pregnancy tests are used, the heart is already forming arteries and chambers.

Congenital Heart Disease (CHD) means heart defects that are formed in the womb. CHD affects 1 in 100,000 live births. Every woman has at least a 1% chance of having a baby with CHD. Those odds increase with a family history of CHD. However, CHD is not genetic. It does not have a greater prevalence among any ethic group. It has not been proven to have been caused by any environmental factors. There are greater odds of a child with a chromosomal defect to also have heart issues, however CHD can happen even without chromosomal defects, such as Maelyn's case. CHD diagnosis are usually complex with more than one issue. Single ventricle defects are most severe type of defect because there is no cure. They only account for about 3% of CHD diagnosis. There is no way for that 4th chamber to form after it doesn't form during those first couple weeks of pregnancy, which means a life time of palliative care, including the Fontan surgeries. The first surgery will direct the blood flowing from the top half of her body directly into her lungs (instead of her heart). The second surgery, which will happen when she is around 2 years, will then direct the blood flowing from the bottom half of her body directly to her lungs. 

The day after I found out I was pregnant, I took Micah to his one year well check (and Ben's 2.5 year well check) where we met our new pediatrician, who caught Micah's enlarged liver and sent us for further testing leading to his diagnosis. Once Micah was diagnosed with Glycogen Storage Diseases I didn't think we would get another rare diagnosis in our family, but CHD doesn't discriminate. Congenital Heart Disease affected my family one year ago, even though I didn't learn anything about it until a few months ago.

Thank you all for praying so much for us over the last year. I've wrestled with how God could knit my daughter together with a crooked, broken heart, but He has carried her and done so much in our lives through all of this. She has a long way to go, but I know that the prayers wont stop, and that God will continue to carry out His plans for us. On October 1 Maelyn will have her first open heart surgery. 

I say to myself, "The Lord is my portion, therefore I will wait for Him." (Lamentiations 3:24)
Before He former her in the womb, He knew her. Before she was born, He set her apart. He has appointed her. (Jeremiah 1:5)

Micah is 2!

We had a little birthday party for Micah yesterday. A few of his friend came over for a Mickey Mouse Club House themed party. He was having a little bit of an off day but he had fun at his party. He was so happy to have friends over to play and he loved getting lots of special treats, including ice cream cake! Today is his actual birthday. We spent the morning at Maelyn's doctors appointment at the hospital, but the boys think the hospital is pretty fun and they get extra snacks there so it was fine with him. This evening we will have a little family party for him with dino nuggets, more ice cream and a couple presents. I am so glad that Maelyn's surgery did not interfere with Micah's birthday. He deserves to feel special and have a great birthday, he has come a long way this year. He had a liver biopsy, started his cornstarch and then broke his leg, not to mention became a middle child! Let's pray he has a better year! And praise God for the adorable, outspoken, loving and caring little boy he his becoming!

Maelyn's MRI

The day before the MRI. Proverbs 31

Maelyn's MRI was a few days ago. She did very well! I was nervous. It her first time under anesthesia and the risks are higher with heart conditions. But the children's hospital has specific pediatric cardiac anesthesiologists, so I knew she was in the best hands possible. She also needed an IV and a breathing tube. She did get a couple of pokes for the IV placement, but she was asleep during it so she probably doesn't notice the bruises on both of her hands. I was worried that the breathing tube would make nursing more difficult for her but she did fine. The only adverse affects she had was a raspy voice for one day and cough for a couple days. Over all she did really good. Tim took her because she needed to fast before hand. Luckily it is only a 4 hour fast for breast fed babies, and daddy was able to take her. She didn't seem to mind the fast at all. Tim said she was strangely happy at the hospital waiting for the procedure. When she woke up she was groggy and upset, but all as to be expected. We were only in recovery for about 45 minutes! Once she was unhooked from everything and dressed in her own clothes and blanket she was much happier. We got to talk to her doctor for a minute on our way out. He was glad to see that she did well and was already leaving. Her oxygen has been pretty good. It has more extreme highs and lows, but over all it is good. Her doctor said that is totally normal and her oxygen is probably still higher because her heart may be growing extra arterial branches to over compensate. They will be able to see that on the MRI and will remove them during surgery if needed. We have a follow up appointment next week and will talk with her nurse and doctor more about the MRI and surgery.

Ready to go in to the MRI

Now that the MRI is done, she is all ready for surgery. We are less than 3 weeks from the surgery. I'm trying not to focus on it or think about it too much. Since I am such a planner and visualizer, it is hard not to think about or plan for the hospital stay. I am feeling kind of prepared for surgery. I'm ready to be out of this day to day with her and to just get it over with. Since we found out about her heart condition I've been preparing for the worst with her, and she keeps ending up doing the best! So I'm praying she keeps it up and just aces surgery. But thinking about staying at the hospital for a week again is hard. Her recovery will be hard but I know it will be easier on me at home. The last couple weeks I've been focusing on little projects around the house and just spending time with my kids. I'm trying to soak in every second with her. It is hard, with other things on my plate and other needy little ones but the boys are pretty good about me tending to her first. The boys get more independent everyday. Sometimes I can't believe how fast they grow!

Day after the MRI, watching TV with her brothers!

The New Normal

As Micah's birthday approaches I have so many emotions. First, of course, I can't believe he is going to be 2! Micah was a hard baby and I feel like I wished away his babyhood, but at the same time we are so much closer because of how hard he was. I spent so much more time trying to soothe him and was up every night with him for 9 months. And even now he is still very emotional, and I feel like I am the same way, so I relate to him emotionally. It took him so long to outgrow the baby phase, so seeing him turn 2 is exciting but hard and happy and sad.

But also, Micah's birthday will be one year since our lives changed forever, turned upside down, and our "new normal" really started. The week of Micah's first birthday was when we found out he was sick and the same week we found out that I was pregnant with Maelyn. It was the week I started to feel morning sickness and also started all of the diagnostic testing for Micah. It was the begining of the longest year of my life. A year that I hope to never experience again. As I was first thinking about this, I had this feeling of, if I can just get through this year everything will be smooth sailing from here on out. But I now realize that this one year anniversary is just that, the end of the first year of our new normal. Yes, it was hopefully the hardest year, our kids getting several diagnosis', going through testing, learning all of the new information that goes along with those diagnosis' and on top of loosing our housing, buying a house, giving birth, and just everything else we went through this year. But the reality is that, for the rest of our lives we will have medical issues to deal with, they are not going away. We may have gotten through the first year but we still have open heart surgeries, heart catheter surgeries, and countless echos, blood draws, abdominal ultrasounds, and hospital visits ahead of us. That is our reality, our new normal. So here's to accepting our families new life, hopefully it gets easier.

Dates on my calendar

Maelyn had her weekly cardiology appointment on Monday. Micah needed more blood work done so we went early and got the blood drawn and ate breakfast at the hospital. Thankfully, Tim was able to come and help. I just got the results back and his triglycerides are getting better! That means the corn starch is working. Hopefully we wont have to increase it, but as of right now there is no end in sight for the 2 am corn starch. 

Maelyn's appointment went well. She is still gaining weight really well! More than an ounce a day. She is ready for surgery, but if her oxygen level can stay up, everyone wants her to be 4 months old for it. Her nurse gave her a developmental assessment and she passed with flying colors. She seems like a perfectly normal 3 month old baby. Praise God! We are hoping that her eating, gaining weight and developing so incredibly well is an indicator that she will do well recovering from surgery. 

Surgery is scheduled for October 1. We will need to check into the hospital the day before. I think we are expecting to be in the hospital a full week. Maybe more maybe less. My parents are planning on coming to stay with the boys.  If you are interested in what the surgery will be doing, look up information on the Glenn Procedure, it is also called the hemi-fontan. In a quick google search for you this is the best I could find. http://www.childrensheartclinic.org/procedureillustrations/bdg.pdf Her heart anatomy is different than the picture but the rearranging of arteries will essentially be the same. 

I also scheduled Maeyn's chest MRI. I really like the Children's Hospital of Colorado, with the exception of the scheduling process. But it is scheduled. The MRI will be one week from today, on the 8th. Maelyn will be put under anesthesia and will have to have a breathing tube placed for the procedure. It is supposed to be an outpatient procedure but they say to have an over night bag ready just in case. You never know how she will come out of anesthesia or how she will recover from the breathing tube. I think the plan is for Tim to take her there (since she will have to be fasting and me holding her would just be torture for the both of us) and then I'll come later with the boys and we will switch places so that I can be there to feed her when she is able to eat again. Tim will take the boys home, while I am at the hospital with Maelyn. 

I'm having mixed emotions about these dates on my calendar. I thought I was feeling ready for all of this, but it being written there, staring at me, is just weird. And it just hit me how soon it will be. I am trying to remind myself that by Christmas she should be fine and that is what we want. We just have to get there. Once surgery is over and she is recovered we wont be constantly checking her oxygen or worrying about when we will be having surgery. She should be fine until her next surgery when she is 2 years old. I'm trying to not let myself think about all of the possible complications and set backs that she could encounter, but sometimes it's hard. And I'm trying to find a balance between what to expect to happen and what to consider might happen. I can ask all the questions but there are really no answers because Maelyn is her own unique self. There is no way to know for sure what the outcome of her surgery will be. We are trying to trust that God will continue to do good things for her and keep her healthy and safe.  

Please continue to pray for her! Pray for her oxygen and health to be great for these next few weeks. Pray for her MRI, that she would handle the anesthesia and breathing tube well and would recover quickly. Pray for her feeding ability. Pray for her surgical team in advance. Pray that God would be her healer and sustainer. Pray that God would be glorified through all of this. 

All of my recent smiley pictures of her are blurry because she's so active!

12 weeks old!

We had an appointment yesterday for Maelyn and got great news! The shunt surgery is out of the picture. She is 12 weeks old and over 12 pounds, so she is now big enough to get the Glenn procedure early if needed. We are going to tentatively schedule the Glenn procedure for early October. If her oxygen drops and stays down before that, Maelyn will probably be admitted for observation and they will decide how to proceed before she has the Glenn surgery. I am so relieved to know that she will not be getting the shunt surgery and I am so glad that I can put a surgery date on my calendar. Before her surgery she will also need an MRI and possibly a heart catheterization. We are looking at having that done mid September. That will be an outpatient procedure, however she will be under anesthesia and have a breathing tube put in for the procedures, so it will be a hard day with a recovery period. 

Having a date for surgery does not mean we will be out of this day to day waiting game. I will still be checking her oxygen several times a day to make sure she is ok. Please keep praying that her oxygen stays above 75%! Her oxygen has been all over the place and has everyone on high alert. Even at her appointment yesterday she was anywhere between 70-81%. Even though it is very unpredictable these days, it is generally averaging 78%. So when she seems to have a low period I am trying to worry less and wait for it to come back up. Her nurse says that is ok as long as everything else is fine (breathing, feeding, mood and coloring), but if she stays below 75% for a couple days I will have to take her in and most likely be admitted. 

Overall she is still doing well. She is getting so big and she is getting very social! She is turning into a cute little girl baby and loosing her new born looks. She has the cutest reactions when she finds a face. Her arms flail and she give a big open mouth smile. She doesn't coo or talk very often but when she does she is very talkative. She is not a fan of tummy time, but she is getting stronger and can lift her head. I don't think she is close to rolling at all. 

Praise God, we made it to 12 weeks without surgery! Her nurse said she might be the biggest baby she's ever sent into surgery! I truly believe God has been sustaining her. He is hearing your prayers and He is in control. He must have big plans for her life! Continue to pray for upcoming procedures and surgeries. Pray for her body and her brain development. Pray for her nurse, doctor and surgeon, that they would have divine wisdom over her and that they would sense the Lord's presence when they are with her. 

Update on all three little ones

Today has been a long hard day and I am going to humbly admit that I threw myself a pity party this afternoon. Since Maelyn was born I've been handling things pretty well, other than being stressed I've been feeling good. That is until today. Micah had an appointment at the Children's Hospital and I had to take all three kids with me. Long story short there were several potty issues that I was ill prepared for and the 4 of us were just a hot mess. I left feeling overwhelmed and defeated. I had mommy guilt and a severe case of the "why me's". Since Maelyn was born I feel like we put Micah's stuff out of our minds, other than his corn starch, and pretended he is fine. So the appointment today, even though it was not new information and he is doing really well, I was reminded that I have two kids with medical needs, and it sucked. Micah is doing well and should continue to do well, but he will need to keep going back to the metabolic clinic, keep having blood work done, keep taking cornstarch, and have liver ultrasounds once a year.

March  -  July

Over the last 4 months Micah has gone from a baby to a two year old. He got hair and has had hair cuts, he lost his baby chub, and he is so happy and silly. He started running, and going down the slide on his own. He started talking (and singing!), he is even more opinionated than ever now that he's talking and he plays intentionally and imaginatively. He's starting to help dress and undress himself, he starting to show interest in the potty, he tries to put his shoes on by himself. It's incredible how fast he caught up on everything. He has not quite caught up height wise but he has weight wise. He is still in 12-18 month pants because his legs are short, but he is wearing shirts that are between 18 month and 2T. His distended belly is so much better and his doctor said his liver feels like it's getting smaller.

Maelyn is growing so fast and is such a great baby. She is so snuggly and starting to smile and interact much more. She is still nursing well, gaining a ton of weight. She is starting to do one longer stretch at night, giving me a little more sleep. You still would never know anything is wrong with her. Some days she looks a little more purple, but I'm probably the only one who notices.

I know shes filling out well but when I take pictures of her I can't believe that double chin!
Pictures just don't do her justice, she's such a cutie!

I am still checking her oxygen all the time, waiting each day to see how she does. I'm trying to stress less about the numbers. I'm trying to live as normally as possible. But we still have weekly cardiology appointments and each week (or really each day) we hope that she does not need to be admitted. Right now she is 11.5 weeks old.  She has to make it to over 13 weeks (or 3 months) before we are in the clear for the shunt surgery, even though her doctor wants to wait until she is 4 months old before she has the Glenn. Until she has the Glenn surgery, we just have no idea what is going to happen. But once she has and is recovered from the Glenn surgery, we will not need to be taking things day by day, she should be fine until she is 2 and will have the Fontan surgery.

So we have to make it a few more weeks in this weird day to day unknown. This week her oxygen was very low and I was contemplating taking her in, but I waited a few days and it came back up. Please continue to pray, in the name of Jesus, that God would keep her oxygen above 75, even though her body is struggling to do so. God is the only one fully capable of sustaining her. He created her body and knows her heart.

Ben is good, but he is going through some sort of phase (I hope). He's been wrestling with figuring out his independence, such as following rules, obeying instructions and talking back. It makes me sad. He used to always be such a sweet polite little boy, I know it is just a phase and he is testing, I just hope it is short lived. He has also been having a little bit of trouble with sleeping and potty training regression. Pray that Ben bounces back and is his sweet normal self. I know it is totally normal and he is learning important lessons, but it's hard on me emotionally.

Daddy was gone most of the week, but we managed, and had a fun week.

The day to day roller coaster

Maelyn's oxygen dictates my life right now. This past week we did not go anywhere or see anyone because I was checking her oxygen so much. I had been told that if her oxygen is below 75%, to call and take her in. This last week her oxygen was all over the place. So much that I just didn't know what to do. I was checking her oxygen 4 times a day and taking notes the range of numbers I was seeing and what she was doing at the time. I emailed her doctor to let him know what I had noticed and let him know that her oxygen had been anywhere between 69-82%. He decided to have me keep monitoring her and just see her at her Friday appointment. Thursday and Friday her oxygen was more steadily around 77%, so I was feeling better. Once we got in to see her doctor he was glad to see that her oxygen was back into the high 70's. He said he thought that he was going to have to admit her to the hospital to monitor her and formulate a plan for her but since her oxygen is still in the high 70's, sometimes 80, we were able to take her home and keep watching her oxygen here. But once her oxygen stays at or below 75%, she will be admitted, so I packed myself a small bag to keep in the car in case we don't get to come home from one of her appointments.

At this last appointment she had another echo. Nothing has changed, but as she gets bigger her blood flow needs should increase even though her blockage stays the same. So, the waiting game is seeing how her body adjusts as she grows, which is why her oxygen fluctuates. Her oxygen has to stay above 75% for at least 3 more weeks before we can say that she will not get the shunt surgery. Each week we go to her cardiologist, I get more and more scared that she is going to need the shunt surgery and dread it even more. Her doctor was explaining the shunt surgery a little more and said that sometime it makes them sicker and only works for a couple months just to get them to the Glenn surgery. But once she is 3 months old there are some other options to try to get her to the Glenn surgery at 4 months. Her doctor ordered some blood work this week to get an idea of where she is at and what he could try to get her to 4 month old without the shunt. 

There is really no explanation as to why her oxygen is still in the high 70's. She is growing like crazy and the blockage has stayed the same. With each growth spurt her oxygen drops but some how comes back up. This day to day waiting game is getting harder. 

I believe her oxygen is still ok simply because we are praying. Please continue to pray for her. Pray that she keeps growing so well but that her oxygen stays where it needs to be. 

"You can ask for anything in my name, and I will do it, so that the Son can bring glory to the Father." John 14:13

Maelyn is 2 months old

It's been hard to update the blog lately. We are still taking things day by day. Overall, life is feeling normal and we are doing great. But at the same time each day is stressful as I check Maelyn's oxygen 2-4 times a day. The last week her oxygen has been all over the place. She had an appointment with her cardiologist on Monday, then she dropped lower on Wednesday, so Friday I called the clinic and they told me to bring her back in. But by the time we go there she was back up higher than she was Monday. There are several different reasons her oxygen might go up or down, so we never know what is going to happen. 

At the impromptu appointment on Friday I got to meet one on one with her cardiologist. I got to ask every question and discuss every concern that has been floating around my mind over the last couple weeks. Her cardiologist is so great. He explains things in a way that is honest and true but somehow not super scary. He knows what he's talking about because he specializes in single ventricle heart defects. And I can tell that he really cares about Maelyn, he really adores her. We discussed different aspects of the 3 different surgeries such as time frames for recovery, risks and complications and what to expect after each. He really wants her to be 4 months old before she has the Glenn surgery. He talked about different option we could explore to get her there if her oxygen drops before then, however if it drops in the next 3-4 weeks we would most likely have the shunt surgery. Even though her oxygen has not be consistent, she is ok for now. We are praying her oxygen can stay high enough to get her to 4 months before needing surgery, but once it is more consistently in the low 70's we will discuss options. Her doctor offered that if we are nervous about her oxygen we can do an overnight in the hospital to monitor her oxygen for 24 hours to see where she is at at all times of day and night. We don't think she needs that, I think we can just monitor her at home. 

I also asked about how lower oxygen might affect her brain and cognitive development and at what % will it affect her. He said they don't really know since there are so many different contributing factors other than oxygen saturation and every individual with congenital heart defects are unique. They think she is fine as long as she isn't staying in the 60's. But pray for her brain development and cognitive development, as her oxygen has been in the the low 70's this week. 

She gave us her first social smiles this week, but they are few and far between. I am glad she is doing it, I was getting nervous that it was taking so long, but it is still hard to get her to do it. She is very serious looking all the time and I wish she would smile at me more! I think I am just always a little worried about her, so I want her to smile at me and let me know she's still happy and ok. The boys were much more expressive babies. Even if it wasn't a smile they just made more coo's and facial expressions but Maelyn still does not express much. 

She is still waking up about every 3-4 hours at night but we had one night that she went 6 hours! I was hoping she would do it again but the next night she did not do as well. Even though she went 6 hours, the Micah alarm still went off at 2 and woke me up, so even if she sleeps someone wakes me up. Ben has been waking up crying and then asking to go to the bathroom, even though he has a diaper on and is sometimes already wet. One day, years from now, I will sleep through the night again. Micah has a follow up appointment with is metabolic doctors in a couple weeks. I hope we will discuss the idea of getting rid of the 2 am corn starch, but it will probably be a couple more years. 

Maelyn is still growing and nursing great! At every appointment I am always shocked at how much she weighs. On Friday she was 10.73 lbs. I feel like I am watching her fill her clothes more and more each day, and I know she is going to out grow them in a couple weeks! Her cheeks are so big and cute! She loves to snuggle and sleeps best when laying on mommy or daddy's chest. She still likes to be swaddled and very warm. She is starting to be awake more during the day but she prefers to be held and look around when she is awake. She is not a huge fan of tummy time unless it is on top of me. Her brothers love her very much and have adjusted to her being part of our routine. Ben knows that after breakfast, when I bring Maelyn into the family room to check her oxygen, he gets to watch TV. Micah loves to talk to her and to touch her face, which I am trying to teach him not to do! She still seems like a normal healthy baby. Sometimes she looks a little more purple to me but Tim says he doesn't notice. She's made it to two months without surgery, we just need to make it one more month in order to say she will only need 2 instead of 3. 

2 months old