Day of surgery

It has been almost a month now since the initial surgery.  I meant to get this posted sooner!! Better late than never...

The night before our daughter's surgery we took our 5 year old son to his first sleepover at our friends' house. He was beyond excited, luckily! It could have gone either way, but he did great! It was so nice to be able to get up at 4am on the morning of the surgery and not have to deal with sibling rivalry or waking 2 exhausted kids. We let our daughter sleep as late as we could. She woke up fine and seemed to be ready for the day, though I could see that she was a bit nervous. She mentioned being scared a few times and I empathized and told her that everyone feels scared the first time they do something they have never done before.

It took about 45 minutes to drive downtown to the hospital and I was holding it together well enough. It seemed a bit surreal to be honest. When we arrived, check-in went smoothly and we went up the the main waiting area. There were many people there and it was all very organized. We were brought back to a room and we got settled in. The nurses did a few things and then. "Child Life Specialist" came in and explained what was going to happen in very child friendly terms. He was really great. He also showed some pictures of where she would go next and where she would wake up.

One of my biggest fears going into surgery was the fact that our daughter has the MTHFR gene mutation (heterozygous). Fortunately the amazing anesthesiologist and I talked 2 nights before about it amd then he came in again to talk more about it while we were in the awesome kids playroom on that floor (they had Frogger and Donkey Kong!!). I could tell that he took the mutation seriously and was very knowledgeable. He really was able to calm a lot of my fears and had great recommendations for the future as far as additional testing to see how she metabolizes specific drugs. Very fascinating information. I also have the mutation but have 2 copies of the A1298C. Either way, nitrous oxide as well as Tyelonol appear to be no-nos for us.

After talking with him, it was time to sign some papers for the nurse, one of which talked about rare anesthesia complications including death so I asked her how rare was rare exactly and she said that she hadnt seen anything rare in her 19 years and had nothing but amazing to say about the anesthesiologist we were working with. That was really helpful to hear. If only she knew how much!!

Our daughter's surgeon came in last and talked with us and joked with our daughter and got her comfortable. I am proud to say our little brave girl did not need the calming medication to get her back to the O.R. She just held her surgeon's hand and walked out the door with her. It was priceless. Watching her walk away was tough, but I didnt get any further than tears stinging my eyes. Huge progress for me!!!

My husband and I walked down to the cafeteria and it was so nice! They had gluten free pancakes!!! Yay!! And eggs, and bacon.... I was even able to eat knowing that she was in such great and capable hands. There were large screens posted all around with the status of patients in surgery. We had a case number and could just check the board, like at the airport, to see where she was in the process. Toward the end, a volunteer came for us and put us in a meeting room so we could talk with the surgeon. She came in and said that our daughter did great and that we could see her shortly. She also drew a helpful diagram of what exactly what she did.

Seeing our daughter in recovery I was prepared for thanks to those who had been in a similar situation. Our daughter was like a wild animal snorting and grunting as she began to come to. I am convinced that it happened so quickly because we knew about the genetic mutation. If I hadnt suffered so many miscarriages along the way I would never have known that I had the mutation or that I had passed it along. Oops:(

Anyway, within about 15 minutes of her waking up, we were in a wheelchair and on our way to the car!!! Unbelievable. She was on morphine so she was feeling no pain on the way home, even strapped into her carseat!

She was happy to be home and settled in. She was a bit sleepy and the pain meds started to wear off about 2 hours before she could take more motrin. Ack. And my husband and my father were out on a mission to find liquid oxycodone. Seemed so hardcore to me that we have kept her just on motrin since surgery. So far so good. The motrin kicked in when she could finally take it and that is when she requested a manicure.

She seems to enjoy all of the attention and tries to garner more. Such a ham! Here is a post surgical photo. It is less disturbing to look at when you know that she is not in pain!!

My next posts will be about filling the expanders. The harder part...

Nevus surgery

This may be my first post that is unrelated to infertility.  I feel compelled, however, to write about my daughter's surgeries to remove a large congenital melanocytic nevus from her back- partly to document it but mostly to help someone else in the same position. I was so fortunate to have come across a blog that was mostly about running, but included the blogger's experience with her son's nevus removal. I sent her an email and she quickly responded and became a wonderful source of support. She was able to prepare me for what was to come.

So, I will start by trying to upload a photo of my precious daughter shortly after birth so you can see what her nevus looked like in the beginning. For those who are planning to keep the nevus,  you can see that it did lighten in color significantly. 

(I did it! My first photos on the blog!)

Anyway, when our daughter was born we were told to see a pediatric dermatologist who advised removing the nevus once our daughter was 6 months old. At the time, we didn't question it much but then our daughter had very painful silent reflux which was causing her growth to slow. We did not feel that having the surgery would be a good idea at that point.  We revisited the idea a year later and talked with another dermatologist who said that more people were deciding not to remove these. 

We carefully considered all of the pros and cons to removal and eventually decided that removal was the best option for us. With even a 5% risk of melanoma we felt it wasnt worth it for us. (You can also look at that as a 95% chance she would not get melanoma). We also felt that when she is a teenager she would not want to have a large hairy mole covering part of her back. I understand when people say that it would build character, but I do feel she will be able to build character in other ways. Kids have become more cruel and this would be an easy target. I would love to be someone who could say,  "you know what, this is her mole and it is beautiful just the way it is (because it is!) and everyone else can just deal with it," but reality is more cruel. When I put myself in my daughter's shoes 10 years from now, I strongly feel that she would be upset that we didn't take it off when we could.  That being said, I do not believe there is a right or wrong answer in these cases. It is a personal decision that no parent takes lightly and should be respected, regardless of the decision. What works for one family may not work for another. 

I think that a big factor in our decision was that I was born with a hemangioma on my nose that could not be removed until I was 13 years old. My childhood memories are not all bad, but the teasing was frequent and the damage long-lasting. (I still get teary eyed watching Rudolph the red-nosed reindeer). I always thank my parents for removing it, especially because the removal was paid for out of pocket. I,am so grateful that they were able to afford to do it. It was considered cosmetic, whereas our daughter has a significantly higher risk of death from melanoma than the average person due to her nevus so it is covered by insurance.

My next post will be about the day of her first surgery. Then I plan to chronicle the months of expansion followed by the surgery to remove the actual nevus.

I have to get to bed because I have to be up tonight to give meds and need to catch a little sleep. I feel like I have an infant again with this new schedule! 

Almost a year

Life happens so quickly! It has been almost a year since my last post. Seems unreal. My son will be turning FIVE in less than 2 weeks! And my daughter will turn FOUR in July. Unbelievable really. They are both doing very well.

My son is in preschool and is doing well and making friends, which is a relief. His teacher does not notice any sensory issues and has no concerns about him so that is great. I still worry about the next few years, but hopefully he will do well. Eye contact is still an issue with new people. His OT mentioned that he still has reflexes that should have disappeared at age 1. This indicates an immature nervous system and can affect learning so I will be keeping a close eye on it. My husband wants to take a break from OT (more from the financial commitment), which I understand but the whole reflex thing xoncerns me. My husband is ignorant about child development so I will be the one in charge of making sure my son gets the help he needs going forward. In order to do that and also to be there for my daughter's upcoming surgery (more on that in a minute), I have decided to take a year leave of absence from work. I am waiting to see if it is approved. I will have to quit if it is not approved, which makes me a little sad but I will have no choice. I have enjoyed that part of my life to some extent (though the majority of the time I find the job very stressful). It has been a huge part of my identity, but I have always wanted to try doing something totally unrelated. We will see if any opportunity presents itself. I will keep my current certification and license just in case...

Back to my daughter's surgery. It is one I have been dreading since her birth. She was born with a giant congenital hairy nevus on her back. It covers 40% of her back so it will require multiple surgeries and skin expansion (google that to see why i dread this!). It is almost a perfect circle and is beautiful to me. I am afraid she will not agree when she is a teenager. I hate making the decision for her, but with the increased risk of melanoma we feel it is in her best interest to do the removal now. We have been doing some psychological preparation and she seems to accept the idea. Her only question is always, "Is it gonna hurt?" I can't lie to her so I tell her that it may hurt a bit, but that she can tell us if it does and we can give her medicine to make the pain go away. I worry about the actual surgery a lot because of her MTHFR gene mutation. I need to consult with the anesthesiologist who will be doing her surgery to make sure she gets the safest anesthetics for her condition. I have had trouble with processing anesthesia and now realize it is due to this mutation.

Between the surgery, work and my husband's non-traditional (read: shitty) work schedule, life is hard. But amazing nonetheless. It is certainly not a hard life compared to many so I cant really complain. I just need to make some adjustments to make it work for where I am currently at in terms of what I can handle. We have no family in town to help so it can be a real juggling act some days, especially the weeks that my husband is gone for 4-5 nights straight. Being a pilot's wife sounds glamorous, but I assure you that it is NOT once you have a family. You are basically a single mom. (Kudos to all the single moms out there!). All of our pilot friends' wives don't work outside the home (I am starting to see why!), so I will try it to see if it reduces my stress level. I know that I am extremely fortunate to be in the position to not work for a year.

Other than that, life is going pretty well. We just went to Orlando and then on a Disney cruise to the Bahamas with my parents. My dad will be 80 this year so he wants to create happy memories for us while he is still able to.  The trip was so much fun even though the weather wasn't good and we were all sick with some terrible upper respiratory virus. It was a much needed vacation. Our second real vacation since 2010!! Oh, and very important to note- we went on the same exact ship that our miracle son was conceived on!!! How is THAT for a special memory!!!

On March 5th, our miracle baby's birthday, we will do the Resolve Walk of Hope. We have been wanting to do it for a long time. Last year I was still dealing with the broken toe. This year, with it falling on our son's birthday, seems like just a special year to do it. We want to do what we can to help and support others who are struggling through the hell that is infertility.

I don't know if anyone will ever come across this blog, but I hope it will be of some help to someone out there. I wrote for my own sanity during a difficult time, but also to help others feel less alone with their negative thoughts. Hoping that now this blog can also give hope to those who need it.