Monday, August 13, 2012

Super Long Post Part 1: The Rash, Katmai, and Pumping

I can't believe its been 2 weeks since I last posted anything. Then again it pretty much has taken me a couple of weeks to even reply to most emails I get these days. I want to write about everything that's been going on, but I just can't bring myself to doing it. The more time goes by the more and more confused I feel about everything. And then there is still the anger, the feeling of being left out, left behind, the emptiness, and so on. Even the "what ifs" still consume me almost daily.

This is going to be long.................

Stupid Rash
A couple weeks ago I noticed this rash on my foot. This was when I was about 3/4 the way finished with planting my garden. Then the Wednesday before I was leaving for my weekend in Katmai I started seeing some red patches on my hands and it itched pretty bad. My first thought was that I must be having a reaction to something I planted in my garden because I had been working in it almost daily for a couple of weeks. I did some research and learned that a couple of the flowers I planted can cause a skin irritation and assumed that had to be it. I was freaking out because go fricken figure that I try to make a nice memorial garden for my babies and something bad comes from it. Just my luck I thought. By Thursday morning the rash had gotten worse and was now all over my hands and blistery in spots, on my left elbow, and down my left arm. I considered going to the Dr. to have it looked at since I was leaving town the next day. I even thought about the last time something didn't seem right with me and it resulted in my uterus rupturing and daughter dying. I didn't go in though and decided to just throw some hydrocortisone on it. Friday morning I woke up and had to finish getting ready so I could leave for my trip. The rash had now spread to a patch on my face and on both ears. Why didn't I fo to the Dr.?
I dealt with the rash all weekend while in Katmai wondering what it was and afraid to touch any plants for fear it would get worse. On Monday I was back at work and the rash was still looking red, mean, and still itching like crazy-the cortisone did nothing.
By the time I got off work the itching was so bad I decided to go to an urgent care. I get in to see the Dr. and he has absolutely no idea what it is. He doesn't believe it was caused by my garden though. Whew, but then what is it from? He had me get a bunch of blood work done and said he might send me to a dermatologist. Before I left he see's in my chart that last year around this time I got Bell's Palsy and asks me if I am one of those people that have all the weird or rare issues happen to them. Buddy you have know idea.
He had given me a steroid cream that seemed to be helping a little but I really wanted to know what caused this rash so I took it upon myself to make an appt with a dermatologist. I went in last Thursday and saw that Dr. and he is pretty sure it is this genetic disorder called porphyria. Oh and it is rare. Me get something or have something that's rare happen- never. From what he says it gets worse from being in the sun and its maybe worse now because my metabolic levels are all messed up from pumping. I don't think this makes sense but I am not a Dr. Also one of the best ways to keep it under control is to get a pint of blood drawn. Can we say fricken weird? He told me a few other things about it and then wanted me to get another blood test done. He hopes what he thinks this is, is it, and then we can work on managing it. Otherwise if he doesn't see the results he wants he might have me get a biopsy done to find out exactly what it is. He then gave me an even stronger steroid spray to use and informed that I might as well pump and dump all my milk until this gets figured out because this medication is not recommended for use with nursing. Before I left he then asked, like the other Dr., if I was one of those people who get all the weird disorders. I am thoroughly annoyed with all of this and wish the Dr. would call me with those results.

Katmai
I went to Katmai Nat'l Park two weekends ago hoping for a fun little getaway. I knew it was going to be a little rough though because after all I am pumping and would have to coordinate hauling around a breast-pump and pumping while camping, hiking, going bear viewing, going on a bus tour, etc. I got it to all work though. It was a lot of dedication but I was determined that I could still go out and do things like this and still pump. Even though I did have to dump it all while being there at least I kept it up for when I got home and could start keeping it again- or so I thought.
The trip was a lot of fun and thank god I have tons of airlines miles that allow me to be able to get away on mini vacations like this. I do think though that if there was ever a contest of the weirdest places anyone has ever pumped before, I would win it. Try pumping in a gear shed and outhouse, with your only light at night being a headlamp, in a bear filled nat'l park and the only way to get to this place is by float plane. It was crazy, but I did it. The PA I work for even thinks I should write a story for a parenting magazine about it.
Also on this trip we took a bus tour out to the Valley of 10,000 Smokes. My seat mate on the bus was this little boy. I liked having him sit next to me, as I do love kids, and we chatted quite a bit. It wasn't until right at the end of our ride that this probably 5-6 year old boy out of nowhere asks me if it hurt when I had my children. WTF, right? Totally caught off guard I give this "ah,ah,ah" answer. He then asks if I have had my children. I hate saying no, but I did. I just didn't know what to say and really wasn't expecting this question to get asked. He then asks a few more questions about my age and if I am married and then moves onto when am I going to have my children and why haven't I had them yet. Crazy! 

Pumping
Now like I said the pumping while camping wasn't so bad and I made it work. Now you throw in crazy, weird rash that I have no idea how I got-different story. It takes a lot of dedication to pump and keep my milk production up for donating and here I get this stupid rash that now makes me wonder if my milk is even safe to donate.
From the start I have recorded all my pumps down on paper with dates and the amount at each pump so that I would have a record of my own of what I have done. Once I started using the cortisone I made sure to record that on my paper as well to make sure I kept track of what milk was pumped after applying that as well as when I used the stronger cream from the one Dr. Now that I am using that new steroid spray nothing is getting recorded because nothing is getting saved. This all just makes me so mad that all my hard work and dedication is now going down the drain-literally.
However, a lady that I donated 30 ounces to shortly after Evelynn was born called me last Thursday though and was wondering if I was still donating. Her baby is now 5 months old and she really needs milk if I can give her some more. I told her I had 2-3 gallons in the freezer but wasn't sure of the safeness of it do to my rash and the creams I am using. I had talked to the milk bank about this and they weren't concerned about the rash but said some cortisone/steroid creams can get in the milk. Most topical things are normally okay for most babies I guess, but the milk bank is usually a little pickier since the milk can go to fragile NICU babies. I would hate knowing I sent anything to them that was potentially unsafe. This lady came on Friday night and took all that milk. It stills worries me a little but she is a midwife so I assume she would know if its okay to use. At least that milk did not go to waste I guess.
So for the past 4 days now since that appt and steroid spray use I have been pumping and it has all gotten thrown away. I went back and forth with what I should do now. On one hand if the rash goes away and I have kept the pumping up I can hopefully start donating again soon. On the other hand I have to quit eventually and this would be as good a time as any since the milk can't be saved so I can't feel too guilty about throwing the milk down the drain. Although if it wasn't for this stupid rash none of this would be of concern right now............
Thinking about quitting stresses the crap out me though. For one thing it has become routine. Routine was huge for me these past few months as it gave me something I had to sit down and do throughout my day and even night. Then there is the fact that I did this for my daughter. This is Evelynn's milk. It is because of her that this milk is even here for me to donate. Some might not understand why I ever decided to do this and others might not understand why I am having a hard time wanting to quit but you see PUMPING HER MILK IS THE LAST REAL PHYSICAL CONNECTION I HAVE WITH HER! It is her milk and it is going to help other babies thrive and once it dries up it is gone. My last real physical connection with my daughter will be gone and that makes me so sad.
I was stressing pretty bad about this on Friday. At one pump I would feel like "okay, I can do this. I can give this up. This is the most logical thing to do" and then at the next pump it was like I was a pump addict not being able to put the pump down. Who would have ever thought it would be so hard to quit pumping? I hate it even more that this stupid rash is what brought this all on.
I have decided though to start slowly weaning. I went cold turkey after Liam passed and that was just damn uncomfortable. I have been slowly trying to cut back on the amount I pump. The last 2 days I was stopping at 5 ounces a time versus pumping until they were drained and figure in a day or so I'll drop down to pumping only about 4 ounces and so on. Last night was also the first night that I did not get up during the night to pump. I haven't not gotten up during the night since I first started pumping. My boobs hurt so fricken bad by morning! I only pumped about 5 ounces this morning, which they could've let out so much more but it was enough to take a good amount of the pressure off. I hate this:(

Tuesday, July 31, 2012

The Weekend

Friday night
Just when I felt like things had been going okay it hit me. I wrote that last post on Friday afternoon and by about 9 that evening the grief took over. The grief came on very suddenly and I know exactly why it did. I had received an email from my friend who is also a fellow fetal surgery baby loss momma like myself. We met through my blog shortly after she lost her daughter in the fetal surgery last August. We have been in touch ever since. She let me know in her email that the one year mark is coming up from the surgery and her daughters passing.
After she lost her daughter she was told to wait at least one year before trying again. I was told at least 6 months. I got pregnant at 8 months and my uterus ruptured. I know that there isn't a guarantee that my uterus wouldn't have ruptured had I waited a year or even longer to get pregnant, but I do know that the longer in between any c-section is best. I listened to the doctors and I still became another damn statistic.
The rest of the evening I played the damn "what-ifs" game. The same questions kept running through my mind over and over again. Why didn't the doctors tell me to wait 1 year or longer? I would've hated it but maybe this wouldn't have happened. Why didn't the doctors do a c-section at the 36 weeks? Instead they almost made me feel guilty about even doing one at 37 weeks saying that she might have lung issues. Alive is better than dead, and many babies are born at 36 weeks or earlier and are just fine. Why didn't the doctors tell me that even though my fetal surgery incision looked fine now that if a rupture was going to happen it could be any day? Why were they so damn certain that things were going to be just fine?
This went on the rest of the evening.
My friend also said that they might not even try at the one year mark, but instead wait until around December to give it more time. Even reading that made me upset. Not that I would want what happened to me to happen to her again, ours stories don't need to end the same, but there is this part of me that's afraid that there will be yet again another person who gets there baby before me. It made me wish that I had someone who had been through what I had before me. That way I could see how long they had waited to get pregnant after the surgery, what happened throughout there next pregnancy, the care they got, what there doctor recommended for a c-section date, whether or not they ruptured, and if they did rupture what there symptoms were.

Saturday
I woke up Saturday to the sun shining. I had mentioned in that last post about starting to enjoy the sunshine, but seeing the sun that morning pissed me off because I was still all bent out of shape from Friday night.
I decided to go check my email and the first email I see was from Derecks aunt. The email opened and it was a picture of Evelynn's gravestone. It was finished and was placed out at the cemetery next to Liam's. I started bawling. It looked beautiful and just like I wanted. Why out of all things though that I should be buying for my daughter right now did a gravestone have to be one of them?

Brother and Sister
Dereck was going to be sleeping all day since he has been working nights while working in town. A friend of mine texted me and had wanted to bike to the airshow that was going on. Not really my thing but I really didn't want to be alone, so I decided to go. I didn't really think that one through though. Of course the airshow would be a huge family event. Already being pretty down that day and then having to see about half of Anchorage there with just about every person I saw having a baby in a carrier, stroller, or pregnant. So instead of watching the air show I stared at babies all afternoon with I'm sure what looked like the most pathetic sad, pouty face. I catch my myself staring at babies all too often. Anybody else ever catch themselves doing that? I wonder what those parents think of me when they notice I am staring at there baby.
By that evening I was all sorts of stressed out. A good friend had invited me out to her boyfriends cabin, which is about 70 miles away, and I decided maybe I should just go there. Once I got on the road I bawled my eyes out for about a good 45 miles of that drive. By the time I got there I didn't feel much like socializing at all. I was just tired from everything.

Sunday
Thankfully the next morning I woke up in a better state of mind. I got out stand up paddle boarding for the first time and loved it. Even my dogs hopped on with me.
When I left there I met up with this lady who I met through my uterine rupture group who has a story similar to me. One stillbirth and then a uterine rupture both resulting in loss. I think I mentioned meeting her a few posts back. Anyway that made for a nice way to end my afternoon. It is always good talking to someone who "gets it."

Monday
My coworker who was pregnant at the same time as me, whose due date was about a month after mine, came back to work. I was a little nervous about it at first as I was afraid that everyone would be asking her about her baby all day long and I would have to hear about it. It went surprisingly well though. She told me she actually asked others not to bring her baby up when I was around so I wouldn't get upset. So sweet of her to think of me and not wanting my feelings hurt. We got pretty close while pregnant and she was there to listen anytime I was having a paranoid moment and just to talk babby stuff with. I know she will still be here to listen to me as I grieve for my little girl, I just wish we could be talking about our new babies together. Actually, if Evelynn were here I wouldn't even be at work to talk to her because I'd be home with her instead.
We also started talking about pumping. It is nice to have someone to talk to about it. Also nice to have someone to share funny milk stories with because I have a few alright, which I am sure every nursing mom does. I have shared a few with friends but I am sure if find my random lactating moments quite as amusing.
A newer coworker, who had started shortly after I came back to work, had overheard us talking pumping on Monday. I always wondered who all at my work new about Evelynn or even that I am pumping. She apparently new neither. She had came up to me later that afternoon and asked about me having a baby at home as well. Always awkward having to tell someone and she obviously wasn't expecting the answer that I gave her.

Okay enough with that now that you got an update of my entire weekend. Hoping the rest of the week goes well. Next weekend hopping a flight to Katmai National Park with a friend bear viewing and hopefully doing a little hiking.

Friday, July 27, 2012

Me Lately

I have hardly wrote much this past month. It's not that I don't have anything to say, its more that I just feel its all the same. I work, I think about Evelynn, I pump, I think about Evelynn, I eat, I think about Evelynn, I sleep, I think about Evelynn, I try to keep myself nonstop distracted with projects-read, garden, clean, house projects, I think about Evelynn, I get out with friends and the dogs for a walk or hike, I think about Evelynn, I run errands, I think about Evelynn, I go out with friends to eat, to play pool, play games, etc, I think about Evelynn, I think about the gestational carrier stuff and beg the world to make time go faster so we can get somewhere with it, I think about Evelynn. I cry for Evelynn, repeat.


Distraction projects are still keeping me distracted, well for the most part.

Derecks brother left last weekend after staying with us for almost 3 weeks. The things that needed to get fixed, got fixed. Now we just need to get everything put away that has been sitting in our dining room for these past 6 months.

I have tried to do a little gardening these past few years since we've boughten our house. I always plant annuals in the front yard, hang flower baskets outside, and have some plants in the house. After Liam passed I had tried to grow peppers, tomatoes, and berries, with no success really-actually it was a disaster. You might have even heard me say a few times that I can't get anything to live. And yes that was said by me and was meant in the worst possible way. Now that Evelynn has passed away as well, it seems all too true. But, I am trying to take a stab at the gardening thing again though. Since our fence is fixed in our backyard now I am trying to create a memorial garden for my babies. It is going to be with all perennials and bushes. God I hope they come back next year. It is a lot of work and has kept me super busy. Plus, I kind of feel like my gardening has a purpose now since it is for my babies. It has to be perfect, for them. Pictures will come!

As far as for my fundraiser, it is slowly making some progress. Had to change the venue though, too small, and I want to try and get it to be BIG. Date of it will probably change to November now as well. I have met with a few more people who have done fundraisers so I can learn as much as I can to pull off a successful one. I wish I could have more accomplished with it by now but am having a hard time working on getting something wrote up about our story. It isn't exactly a real distraction project I'd say since the reason for doing a fundraiser is directly related to what I am trying to avoid.

Still doing quite a bit of reading. Finally got around to reading the Hunger Games. I hurried up and finished the first book so Dereck and I could go see it at the theater a couple weekends ago. I am not a big theater person, it's too expensive and I just don't sit still well. This theater is different though as its cheap, because it plays movies that have been out awhile, and also serves good food and beverages to enjoy while watching the movie. Thought it would be a good bet to go on a Saturday night to the late showing and not have to worry about babies. Wrong! Who the F brings there baby to a movie that late? Actually there was two of them in the theater. One cried a little during the movie but the other one, which was sitting just on the other side of the aisle from me, cried on and off the whole. fricken. movie. I was ready to scream at the those parents. I tend to do better these days seeing babies, but I still can't handle the sound of one. Assuming its because I have yet to ever hear one of my own babies make a sound.

It really does seem like the one thing I want more than anything in this world is the one thing that causes me the most heartache:(

Oh, and my dreams lately have been a combination of the Hunger Games (now reading book 2) and babyloss. Seriously not a good combination.

Dereck didn't have to leave town for work last weekend for his normal 3 weeks. There was a job in town that his work needed someone to do, and he got it. I am happy he is in town and I get to see him at least a little bit every day, versus not at all, but it still sucks in a way. I say that because he will have spent more time at home this year than he has since we moved to Alaska 5 years ago. He was off work for 10 weeks when Evelynn was born so he could spend time with her and now that he is working in town he will be home for a minimum of another 9 weeks until he has to leave town for work again. Working in town would've allowed him to have spent so much extra time with his daughter during these first 6 months of her life:(

I am still seeing that new counselor once a week and I still go to grief group every other week. Actually I skipped group last night. I don't really feel like any of it helps much anymore. I used to really like group, especially being able to talk with others who have gone through what I have, but now that Evelynn has died as well my attitude toward other peoples losses have changed. I swear I went from being super sympathetic to others losses to being very unsympathetic. There is this part of me that feels like, "oh, you've had one loss, cry, try going through it twice." It's negative, it's rude, I probably sound like a total bitch, and probably could use a complete attitude adjustment. I know what you are all probably thinking reading this, but I can't help the way I feel. It's not that I don't care. I'm just having a hard dealing with the fact that this happened to me again.

Via facebook messaging I have spoke to a fellow blm asking her about what it is like to finally have a baby at home. I wonder so often what that is like and if I'll ever get to experience it. Although I think now I am so beyond mentally fucked up that I am going to be one beyond crazy parent if it does happen. This momma is so sweet and shared with me her take on it. I feel this momma and me will always have a special connection, for our rainbow babies share the same birthday, although hers gets to be here in her arms, mine in my heart. The morning of the 22nd as I thought about how Evelynn should be 3 months old I also thought of her little boy. That same morning Addison and Mason's mom let me know that she was thinking of Evelynn as well. Love her:)

I have been thinking also a lot about how at this time the last 2 years I have been either pregnant or trying to get pregnant. Still no baby in my arms and right now none of the above are going on and it is going to be that way through at least the end of the year. It's going to be so different going into fall and then winter and not be pregnant. I also fear the holidays are going to seem even emptier this year:(

I am definitely still struggling, but I am doing okay. The sun doesn't seem to bother me as much as it did just a month ago either, I am actually enjoying its presence when it does come out. It was hard for a long time to want to be near anyone that appeared happy, but these last few weeks I have actually went out quite a few times with friends, and even been sociable with them. I have laughed and I have had fun. Not what should be, but trying to make the most of it.

Monday, July 23, 2012

3 Months

My sweet Evelynn,

My beautiful baby girl, can it really be that 3 months ago yesterday that you were born and I first got to see you? Why though does it have to be that tomorrow marks 3 months without you as well? I think about you almost every minute of everyday, but you already know that I'm sure. I wish I could kiss those cute chubby cheeks and your little button nose, brush your beautiful dark hair, and wrap my arms around your perfect, little, chubby, baby body. I got to do all of that in a few short days with you, that I will treasure forever, but hate that I will never get to again. I miss all that, I miss you.
You will always be my perfect, beautiful baby girl.
I love you so much.
Love always,
Mom



Friday, July 13, 2012

Baby Via Gestational Carrier Journey Update 2

It seemed like it was going to be forever until July, 11th came, but it finally did. On July 11th Jessica had her appt. with her Ob to discuss her plans to be our gestational carrier. She let me know after the appt that it went great! Her Ob will be writing her clearance letter and sending it along with all of her pregnancy related medical records to our RE asap.

Step one down. Now to try and make it through the next 6 weeks until she meets with our RE on August 23rd. At that appt. he will do a multitude of tests, and if he clears her as well, then we can officially get started!

Jessica also let me know that this was the first time that she had openly discussed being a gestational carrier to anyone outside of family and close friends. She said she left the appt. feeling excited. I was happy to hear that the appt. went well but I was even happier hearing her say that she was so excited. A lot of what I learned about finding the right carrier revolves around having one that really wants to do it, and for the right reasons. You don't want someone who feels guilted into it or just wants money. Instead you want someone who enjoys being pregnant and truly wants to help.

Jessica also visited my babies last month. I loved hearing that she took time out to go visit them. She even got these pinwheels for there graves.



Also, I created a tab on the top for anyone who wants to just follow along with our gestational carrier journey. There I will also be including/updating all of the costs incurred for this process.
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