Long overdue update!!

Wow. It is a good thing I don't blog for a living! I am so bad at leaving people hanging. It is now about 8 months after that first surgery to place the expanders. For not working at my regular job, I sure stayed busy. I have been on a leave of absence since the start of the school year in August. I just turned in my notice to return for the coming school year. I hope it was a good decision!

So, my daughter's skin expansion went fairly well. The expanders themselves did not appear to hurt her or really get too much in her way. Kids have an unbelievable ability to adapt to their circumstances! We went in for weekly saline injections to fill her "bubbles." That was by far the worst part. She began to dread these visits to the surgeon's office and cried, "No more pokies!" Wednesdays became very difficult. We gave S a present after each fill, usually something from Target like a game or shopkins toy. It helped but the dread was still a factor.

Her surgeon put anywhere  from 40-60ccs in each "bubble" at each visit. It was hard to watch:( It was also hard to keep a dancer off her feet. Somehow, one of her bubbles had a leak. The surgeon never did figure out where it was coming from. She said it could have been there right away and we just noticed it more as it grew. We will never really know for sure. Unfortunately, because of this leak we did not know whether or not her second surgery would be successful or if S would come out of surgery with another expander for a few more months.

When August came, her surgeon said she would be ready for the next surgery at the end of August so we got it on the schedule but let them know that we were very flexible and if they needed us to take a cancellation we could do it. Well, the next afternoon at 1pm I received a call saying that they would like to move us to the next day! It was a scary decision to make on short notice but after discussing it with my husband and finding out that her first anesthesiologist was hand picking the anesthesiologist for the next surgery we were ready. Our first anesthesiologist was very aware of the MTHFR mutation that S has so we felt like we were in good hands. She had come out of anesthesia without difficulty the first time so we wanted the same thing for the second surgery.

We are so lucky to live in such close proximity to an amazing children's hospital. It makes such a difference. The next morning we were as ready as we could be given short notice. I figured that mentally it was better to just get it overwith. There wasnt going to be a good time for this surgery.

The surgery took 3 hours, which is like 3 months when it is your precious baby! We placed bets on whether she was going to come out with the entire mole and expanders removed or just the partial mole and a new expander. Fortunately I won that bet!! The surgeon said she had just the right amount of skin to work with. Yay!!!! She tolerated the surgery well and when I got to see her she was asking for goldfish crackers so I knew she was okay. She was wrapped like a burrito and had two drains coming out of her little body to drain any fluid build up. This was a major surgery and her entire back was pretty much new skin that had to readhere to her back. Her incision was taped so we didnt get to see the scar fully for a couple of weeks.

When we first got S home, it was clear that this surgery was much more difficult on her than the placement of the expanders was. She was in more pain but still was able to rely on advil and tylenol. We were trying to avoid using the narcotics they gave us, but would have most definitely given them to her if the OTC pain reliever hadn't worked. She was not up and dancing for several days. The fluid built up and she had a hematoma. It didnt look right so we called the doctor on call. He suggested stripping the lines (a technique where you hold one end of the tube while you use your other fingers to pull along the tube to loosen anything in it and get the flow started again). Luckily the technique worked like a charm and she put out about 90ccs of fluid in a matter of an hour. She had been putting out less than 10 and her back was so puffy prior to that. I think S felt a lot better with the fluid drained. She ended up missing 3 weeks of school. We couldn't send her with those drains for fear of infection or accidentally getting the drains pulled out by another preschooler. OUCH!! Her class made very sweet Get Well pictures for her. Her teacher offered to help. Everyone was so sweet.

It was such a relief to have those surgeries over. The removal has been hanging over our heads since she was born! To celebrate we booked a cruise to the Virgin Islands and Bahamas on NCL. We were on the Norwegian Escape and it was A.MA.ZING. We actually enjoyed it as much as our Disney Cruise in February. We were very impressed with NCL. It was so much fun to see our daughter running around on the beach without her "bubbles." :)

The scar is healing pretty nicely and will hardly be noticeable someday. She earned that scar so she should be very proud of it. She is an amazingly strong little girl and I am in awe of her bravery!!

Here is a photo from one month post op. You can see a small scar at the bottom right. That is from one of her drains. She has a similar scar on the other side:

Here is a photo from 5 months post op. It definitely looks less raw:

For anyone who is researching nevus removal and has any questions at all, please leave a comment. I would be happy to answer any questions about how we decided to do the removal and how the process went. It certainly is a difficult decision. I worried that I would miss our daughter's beauty mark, and I did - for about 10 minutes. I quickly realized we had done the right thing for us and for our daughter though. We have no regrets!

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.

Smack.

Right in the face. There was infertility again. Just when I think I may have "moved on" (not actually possible), I find myself blindsided by those emotions. So today, I had to do one of those video goodbye messages for my boss, who is retiring. I knew that I wanted her to know how much her support meant to me during my struggle (all out war) with infertility, so I brought a picture of my son (who just turned FOUR!) and my daughter (who will be THREE! in 2 months) to include in my message. In the video I told her that she was one of the best directors I have ever had and that I had been warned in graduate school by a previous supervisor that nobody in the real world would be accommodating during times of need like they are in graduate school. I told her that she proved that supervisor wrong and that without her support by giving me time off for my fertility treatments and surgeries I would not have my beautiful children (I held up the pictures). And SMACK. There were the tears (on video. Omg.). I was completely blindsided. I didn't even feel them coming. I am mortified, but also know she will appreciate this message. She surely thinks I am crazy. The last time I was in her office requesting time off I was attempting to explain infertility and being all jacked up on hormones I proceeded to mention that it was very upsetting because I couldn't do what most rabbits can do so easily. Not.professional.at.all. I was truly an emotional basket case all of those years and I would love to go back and apologize to anyone who met me at any point during those 7 years. I was not myself, but I was morphing into who I am today. Someone who is no longer the same person, but someone who also carries some seriously deep scars from the journey.

Today was definitely out of the blue. I used to function on the verge of tears like that at all times, especially after my second miscarriage (and third...and fourth...). I cannot believe that I was even able to hold down a job in that state mind. Wow. My boss was seriously a kind and compassionate person to keep me in my position. I know that many people are not so lucky. I am glad that I was able to formally thank her. I am sad that infertility is permanent regardless of how it is "resolved."

4 years

Hello... Anyone out there? I should probably start titling these posts "annual update" since that is becoming the trend. I gave the title 4 years because, O.M.G., my son will be turning FOUR 2 weeks from today. FOUR. YEARS. How can that even be possible??? The years go by all too fast. I love watching my children (so unbelievable to even say) grow and learn, but wow, sometimes I just want to freeze time. I am trying to take more videos of them because they are so fun to watch later on. I miss the baby phase so much sometimes. I swear if I was younger I would have one more. I truly don't envision another at this point and am at peace with that primarily because of my very advanced maternal age. I also feel that I want to focus on the two I have. I feel like our little family is perfect right where it is. That is not to say that another child would not be welcomed, it just isn't something I would ever TRY to do. I feel lucky to have been able to have a boy and a girl. Having one of each is the best of both worlds for sure.

Little boy is still quirky, maybe slightly less so, but still quirky. I can't imagine him being anything other than an engineer the way he puts things together. He sees the world in a different way. Nobody wants their child to be different and struggle with friendships and the world at large. It is hard and I don't know how the next several years will play out for him socially but I am doing my best to guide him. He is smart as a whip so hopefully some direct teaching will help him (helps that I am a speech pathologist and we work a lot on social language). He will attend a full day pre k program next year which I think he will enjoy. He is the cuddliest little Momma's boy ever and we share a very special bond. I love him to pieces. Still hard to believe it has been four years since he arrived!!!

Little Miss is now 2 years, 7 months and is adorable. A very pretty girl according to all who meet her. Her eyes are stunning and OMG this girl can flirt! Fun to watch her in action. Embarrassing at times! She is much more laid back than her brother but does like things in order. She is obsessed with shoes (my parents report that she got this from me). She has a sweet tooth and will beg for chocolate (like her mommy). She loves art (didn't get that from mommy) and also loves Star Wars (that is from daddy). She actually chose Star Wars over Hello Kitty when given a choice between shows to watch. She says the funniest stuff and has the cutest, tiniest voice ever!! I need to record her more often. She goes to daycare/preschool three days per week and seems to enjoy it. We wanted to have her around typically developing peers for socialization. She and her brother get along until they don't. They are so close in age it feels like I am raising twins some days. Lots of work especially when the hubby is out of town so much. Little Miss is a bit of a daddy's girl so that can be challenging. She will be turning THREE in just 4 months. Ugh. I am out of babies:(

The hubby is doing well, though he is "man sick" right now. You know how men get a sniffle and it completely devastates them. Meanwhile I am sick but going to work and then doing extra at home so Mr. Man sick can rest. In his defense, his sniffle is worse than usual and there is a cough involved. Overall, married life is settling down a bit as the kids get easier, which is nice. I was worried it wouldn't get better!

I am doing ok. Have gained a crapload of weight (25-30 lbs) since I stopped breastfeeding. I knew it would happen. Now I need to get healthy so I can start semi private training at the gym. I broke my toe in October amd it STILL hurts and now I have a sore throat. My body really suffered with the stress of 7 years of fertility drugs and surgeries followed by 2 csections 16 months apart, not to mention what pregnancy itself does to the body. Follow that with 16 months of exclusive pumping and an extremely limited diet and you have the makings of a fat old unhealthy mom:( Add on the stress of a kid on the autism spectrum and working part time and being a single mom several nights per week and there you have it. Hard to believe I am alive! I am going to reclaim my old body and try to restore my health. As I read all of that back to myself it makes me realize that I need to be kind and patient with myself. I should actually look much worse than I do based on all of that.  

I will get there. Somehow being a mom has made me less hard on my body image. The kids filled a gaping hole in my heart. Now it is all of the small stressors that are adding up.  I need to regain my focus and get healthy for my kids so I can be a good role model.

Maybe I should write more frequently so nobody has to wade through a ridiculously long post like this again!!

I should be off to bed. Getting more sleep is one of my big goals and I am making progress.

Little by little...

Random update!

Wow,life gets busy. In case anyone reads this, I want to update every once in a while. Things seem to be settling in-ish here. Do they ever really settle?? Am quickly learning that they don't. So I just try to enjoy every moment. Sometimes I am amazed by how content I feel amidst the chaos that is life. My little ones are not really so little anymore and they have entered the cutest of cute phases. If I were 10 years younger and wealthy I would most certainly try to have another. But, alas, I am not and I am beyond grateful for the 2 I have. I still lurk on the infertility blogs. I cant seem to stay away. I guess I feel more connected to the infertile world than the fertile world. I hurt for those who are in the place that I spent so much time in. I am so often amazed by their resilience. I dont remember ever feeling resilient, but perhaps I was. Sometimes I think that just surviving to tell about another day is the definition of resilience, no matter how that day turns out. I guess I dont have much else to add. The kids are doing pretty well. My son turned 3 and can be such a sweet boy. He continues to be quirky and is actually having an EEG at the end of the month to rule out seizures. I do believe he will eventually end up with a diagnosis on the autism spectrum. Time will tell. Baby girl is growing and talks nonstop. She is so cute and sweet and I credit some of my son's progress with her sheer existence. She has really helped him so much. I hope that they both continue to do well. And I hope that they remain the best buddies that they are now!! I am so, so lucky to have them. Knowing this makes raising them a little bit easier in my opinion. Anyway, I hope people stop by once in a while and I hope that the information I have written about is useful to someone at some point. If you still have even a shred of hope left in your heart, please dont give up trying to have a child. I will try to update again soon, probably with more details about my daughter's upcoming surgery to remove the giant hairy nevus from her back:( Am sooooo not looking forward to all that entails. Just google "skin expander toddler" to get an idea. Poor girl... Sidenote- I just realized that it has been almost a YEAR since my last post!!!! Yikes. That went by entirely too fast. WOW.