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!