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!