Test Results

I got a message last night from my doctor that my test results were in and I needed to call him in the morning. Bottom line - most everything came back normal with exception to one test, a gene mutation called MTHFR.

Basically, in very simple terms, this gene tells the body to process amino acids, specifically folic acid. If there is a mutation, then either the gene isn't doing its job or it's not doing it very well, which leads to high levels of a certain type of amino acid. When this occurs, it could lead to a blood clotting disorder and give you a higher risk for cardiovascular disease, heart disease, stroke, etc.

This gene has two parts. We'll call them A & B. Both A and B also have two parts.

A - one and two
B - one and two

For me, A1 is normal and A2 is abnormal. B1 is normal and B2 is abnormal. This could mean my levels may be normal or they may be high, depending on how well the normal ones are working. If they are high (which isn't good), then there may or may not be things I can do in another pregnancy.

This mutation was only recently discovered and there is not enough research out there yet for a consensus on what to do. After reading about it in terms of pregnancy, there really is no good news in my opinion. There are things some doctors would have me do, but other doctors may not see fit in doing anything. Dr. Y even said the same thing. He said perinatologists are split on the issue.

I go back in three weeks for blood work. We'll see how everything looks overall. There will definitely be another appointment at some point with the perinatologists for their take on my results and the current research.

I'm pretty sure I'm more confused now than ever. There's so much to take in and digest. Either way, I probably should start taking vitamins again, don't you think?

The Good, The Bad & The Ugly

What a day. I had a doctor's appointment this morning and then Mom, my aunt and I were going out to lunch and shopping. I walked into the office only to be surrounded by a room full of pregnant women holding their ultrasound pictures and kids everywhere. I was ok for about ten minutes, but after 45 I was in mini-breakdown mode. Then a new nurse took me back and started asking me all these questions as if this was a prenatal appointment. I had to tell her it wasn't. By the time the doctor saw me, I was a mess.

Then, I found out they couldn't get any kind of results from the chromosome tests. The cells wouldn't grow. My tests for something to do with my phospholipids came back normal, which is both good and bad. I have no idea what that is, but apparently if you have it or markers for it, then it is thought to possibly be a factor in the preeclampsia. So, now we know that isn't a factor. He also took me off one of my bp meds, but I have to check it the next few days and then call him with the numbers. It was a little high today, but considering my wait in their waiting room, it was almost expected. He hopes to have a few more results by the time I call on Friday. So, we'll see.

Then, we go to the Olive Garden and a lovely pregnant woman sits down right beside us. The mall is next and again the same. The worst happened while I was standing in line to check out at JC Penney. A girl was standing there checking out, buying all kinds of cute little girl baby clothes, talking about all those happy things I should be talking about and to beat it all, she is due the same time I was supposed to be due. I had to turn around and just breathe. It took everything in me to stay strong. Once I got in the car, I ate three no bake cookies and cried all the way home.

The good news, however, is he did release me, at least for the next 3 weeks. Then, I'll have more blood work. Geesh. Just when I think I'm doing fairly good, I fall right through the ice. But, I guess that's to be expected.

Lost Song

I have lost my voice. It's gone. One of my biggest stress relievers has always been sitting down with my guitar or at the piano and singing. I picked up my guitar for the first time in awhile a couple days ago and could barely get words out of my mouth. Shannon said, "Oh it's just allergies." It's not allergies. My voice hasn't been the same since I was in the hospital. I mentioned it to Mom a week or so ago. It's all raspy, but not in a good way. Mom said she noticed it too, but didn't really think too much about it. Shannon said he didn't really notice it, but then he hears me every day. It's frustrating. I was by no means a grammy award winner, but when you can't even carry a tune anymore...geesh. What else? Guess it's time for a new stress reliever, but I have no idea what that might be. Music has always been my thing. So, now what? **Big Sigh**

I've been sitting here watching American Idol tonight. It's Shania Twain week. Her music has always been one of my favorites to sing, and in fact I tried to sing one of her songs a few days ago. I guess that's what has me even thinking about it tonight. Oh well. Maybe I'll trade my voice for the piano. It's been a long time since I've played for any significant amount of time and Lord knows I could use the practice.

This and That

I managed to make it through three days of working half days and another weekend. I still don't like weekends. The reason being I've decided, is there is no routine. It's wide open, which leaves my mind free to wander. Overall though, the weekend wasn't too bad.

I look forward to actually having something to look forward to - summer, boats, campfires, smores. Oh and maybe a tan. I went to get a pedicure the other day and the guy that was doing it said, "Why you so white? I've never seen you so white." Gee, thanks. He's right, though. I'm so white I glimmer in the sun like the vampires in the Twilight movies. Which reminds me, I do have something to look forward to - May 2nd. The new Sookie Stackhouse (True Blood) book comes out and mine is already pre-ordered. I actually bought the audio cd. Don't hate. I can devour a good book in two hours. I wanted to enjoy this one a little longer. Plus, since I'll be doing a lot of walking this summer to try to get my energy and some muscle tone back, what better way to exercise then to listen to my second favorite book series? My first being Harry Potter, of course.

Today is my first full day back to work. I have plenty to do and that makes me happy. Keep me busy. That's a must. We also have interviews this week and next for our new supervisor, not to mention commencement. This is a very busy time for the office. Thank goodness. I also have another doctor's appointment on Wednesday. We're keeping our fingers and toes crossed for more good news and maybe even a little less blood pressure medicine.

Bouncing Back

I've been reading a book called The Bounce Back Book: How to Thrive in the Face of Adversity, Setbacks, and Losses. It's sat in my spare bedroom since I got home from the hospital. I wasn't really up to any kind of reading, let alone a Debby Downer on how to cope with loss. But last night I was going through my things from the hospital (finally) and ran across the book. I picked it up, sat down on the edge of the bed, and turned to the first page. Before I knew it, my feet were propped up and I had already read half of it.

It's not preachy. It's not a just get over it. It really is a how to heal and recover and deal with whatever bad thing(s) has(have) happened. It's funny. It's enlightening. It's truthful. And it gives me exercises based on what actual counselors or psychologists would have you do to help move forward. It's already helped me put some things in perspective. The most important being we can't change the past, only the future. That means it's up to us to determine how this will define our lives...for the better or for the worse. Are we weak or are we strong? We have to choose and getting to that point is a process that's not easy.

I told my husband he has to read it as well and when he's finished I wanted to sit down and talk through it. Shannon's so picky about what he reads, but I think this is just the ticket for him too. So, today, although I'm sure there will still be a few tears at some point, I'm feeling a little better. I'm feeling a little more in control. Tomorrow I may not be able to get out of bed, but for today I'll take it.

Thanks to my Indy girls and Rebekah in NashVegas for sending me this book. At least for now, it's just what I need.

Officially our 'new normal'

It feels good to be back to work. It takes my mind away from the past several weeks for a few hours. It has also worn me out, so I was actually able to sleep last night. I've been getting a taste of this new normal we have now. I might have mentioned this in another entry, but a few days ago I knocked a baby angel someone sent us off the table and it broke. I had to catch myself on the table to keep from going to my knees. I was devastated. Yesterday, I glued her back together. I couldn't help but feel that was how I feel - the pieces may fit together again, but I'll always be broken, cracked. I don't quite "fit together" the way I used to even though I may appear the same on the outside. This was very evident in both of us last night.

Bad days, good days, just getting through days and then trying to sync up with each other and have a normal existence right now is really hard. It's hard on each of us as individuals and hard on us as a couple. The stress drives me crazy. We pushed ourselves last night for some normalcy. It wasn't easy, but we managed to get out and go to dinner and have a somewhat mundane, but enjoyable conversation. It took a few tears and some frustration, but we did get out of the house.

We both dread the inevitable onslaught of "how are you doing?" and "I'm so sorry" or "just try again." There are a few places we know we have to avoid at the moment, but then there are places I think we can go to ease our way back into small town living. Right now, living in a big city seems quite desirable. We could just fade into the crowd and not worry about it, but not here. It's like Cheers, everybody knows your name. Of course, this blog doesn't help. Now everyone knows our business. LOL I can't help it though; it helps me say what I need to say without actually saying it out loud.

Anyway, here's to our new normal and the hope there's still some good to come.

Video

It seems everything I write is so sad. I'm sure some of you are tired of reading it. One word to describe this blog - depressing. I write for therapy. I write to try to get out some of the frustration, hurt and anger I feel. I can honestly say I'm broken. BUT I will not let this rule my life. I don't know how I'm going to do it, but somehow I will.

My cousin Leslie sent me a video the other day. I've watched it over and over. It's been such an encouragement to me. One of the singers from Hillsong went through a similar situation a couple of years ago. She talked about how not long after losing her baby boy at 23/5, she was scheduled to sing. She said she knew she had to, didn't really want to, but did it anyway. At the time, she said she didn't feel God, but she sang to him anyway. She knew he was there even if she didn't feel Him. She did it again and again, despite her brokenness. Then, at some point, she felt Him again.

I can relate. Right now, I don't feel anything but I know He's there and I know if I keep on walking, keep on going, eventually life will return. Although I'm pretty confident the pain will never go away, I know it will ease.

I'm going to try to be a little more positive. Even though I don't want to and don't feel like it, I'm going to do it...

I'm thankful today for my health, for surviving something so horrible, for being able to bend my legs, walk across the room, and even sit up. I'm thankful for my husband who holds my hand, comforts me when I cry and loves me no matter what. I'm thankful for my family who stood by me during my darkest days even though I know it was hard for them to see me like that and deal with something so emotionally overwhelming. I'm thankful for the beautiful weather we've had that's helped keep my spirits up, to know that spring is always a time of rebirth no matter who we are or what has happened in our lives. I'm thankful for my dog who has snuggled with me and licked my face whenever I've been home alone and needed comforting. I'm thankful that my baby girl is in my grandparents' arms along with many other wonderful family members. She will never know the pain this world can bring. She will only know love and peace. When I think the tears will never go away, I remind myself how blessed we are and it gets me through another day.

Hillsong - Desert Song Interview

Coping

I've decided to go back to work on Wednesday. I'm going to try half days for the rest of the week. I need to get my mind on something other than what I've been living the past couple months. I didn't even get out of bed yesterday until dinner time. I just couldn't do it. Yesterday was my hardest day. I thought after the service I could begin to move on a little more, but then it's just not that easy, is it?

I can't sleep and the couple times I've been able to I relive everything that's happened. Saturday night I dreamed she was fine. I had her in my arms rocking her, kissing her. I woke up a mess. I just couldn't stop crying. I can't get the image out of my head. Not even Xanax can stop those tears. Then, there are other times I feel like I can get through this, move on, but I start to feel guilty for feeling that. I honestly don't know what to do with myself and I hate it. Shannon has very specific and focused hobbies that keep him going. I don't, at least none that allow me to keep my mind focused long enough to keep it from wandering.

I found an article last night that was published in the Daily Mail, a newspaper in England. It was written by a father who almost lost his wife to preeclampsia, among other things. He is a mathematician and he wrote it from the perspective of how sometimes logic can't be found and how hard it was for him to accept that. They too lost their baby. Although her situation was quite a bit worse than mine, their story reminded me so much of us. The need for logic behind something that has none and how they each dealt with and coped with the situation differently, and that eventually they were able to find real happiness again. It gave me some peace at the end of the day. I'll take what I can get right now.

I will say Josey's service was perfect. I don't know how else to describe it. We have so many beautiful flowers to plant in her memory. I don't have much of a green thumb, but we're going to give it a go anyway. Today I'm going to figure out where I want everything to go. Once it warms up a bit tomorrow I think we're going to head to Lowe's to get what we need to plant them. We have a beautiful hydrangea bush, several gorgeous pink and yellow rose bushes, and even a couple of others that I don't know what they are. LOL But we'll find a place for them.

A New Beginning or A New After?

Tomorrow we finally lay our sweet little one to rest. We decided against a funeral because, to be quite honest, we weren't sure we could handle visiting with everyone we knew and also we had no idea that I would be as well as I am. The doctors told me it could be months before I was completely recovered. I may be weak, but physically I'm basically back to myself. We've talked a lot about tomorrow, as well as other special dates that mean something to all three of us throughout the year and how to deal with those. We didn't come up with an answer other than to just get through them. Tomorrow is one of those days. Thankfully, we both have a wonderful family to support us.

The one thing we truly understand is that we can't stay in the past. Right now it's really hard, but once tomorrow is over, we have to live in the after. Maybe it's a new beginning? Maybe it's just the after. I don't know. Either way, it's a new start, a different beginning, a new happily ever after. We refuse to read or believe the statistics on marriages after child loss. I honestly feel closer to my husband now than I did when we were married. I have no doubt we'll stumble our way through this and happy days will return.

Once we know a little more about what might or might not have caused my IUGR and pre-eclampsia (well at least to the best of the dr's ability based on my lab results) and we have found ourselves again, then we are going to come back to the idea of having children again. Right now is not the time. If adoption is our only route, then so be it. We may give it a try. If my labs come back and there is something there that stands out like a sore thumb and we can control it, then maybe we'll try again. We don't know and won't for awhile, but we've got our plan. We are planners after all. It makes us feel better. Spontaneity, not so much. lol

Please pray for our family tomorrow as we go through this difficult time. I know I've said it before, but we really do appreciate and feel all those prayers that have been directed our way. It's amazing how much being surrounded by the love of your friends and family can help get you through just one more day.

First Checkup

Yesterday I had my first checkup since leaving the hospital on Thursday afternoon. I was a wreck just thinking about going back to the hospital. I was so afraid he'd say, "well, you're going to have to stay the night." Luckily, I had some medication for that. LOL

Anyway, I made it to his office and thankfully got a good report. He was amazed at the weight I had lost. As of yesterday, I had lost 40.4 pounds since coming home. He just shook his head and said he's never seen a recovery this fast. My blood pressure was great and most of my swelling is gone. I still don't really have ankles or feet, but you can almost tell they are there. We discussed going forward (by the way, I hate that phrase, but it fits the sentence so...) with my meds and eventually weaning me off of some of them. One of them is a headache preventative, which I need for my migraines, but the other one actually causes headaches. So, go figure.

I have another 6 weeks before he'll consider officially releasing me, but I am allowed to start easing back into some things. I can take a walk, drive, and go back to work. However, all of this is dependent upon my strength. So, a walk may be to the end of my road and back. A drive may be the same. And working will probably have to start with some half days while working my way into a full day. I'm still really sore and pretty weak, but I do feel a little stronger each day, so I was so happy to know I can begin to work towards some normal things.

Once I reach the six week mark, most of my lab results should be back. I'll probably still be waiting for a couple, but we may know a little more then. I have been tested for so many things it makes my head spin. Plus the test results on Josey should also be back by then. At this point, I'm not sure it will matter what the results show. Shannon and I are absolutely terrified of getting pregnant again. As much as we would like to, it is the scariest thing on earth right now for both of us. Maybe if I hadn't been so sick that I almost didn't come home too, then it would be different. Of course, we've got time to talk about this and we will, but it's just too much at the moment.

One Week Down

We've made it a week. It's been miserable. Just when I feel like I can make it through one minute, the very next I can't breathe. I suppose that's normal.

So far today I've been okay. My sister took me on my first official "outing" to Wal-Mart to pick up a couple things I needed and to the bank. It felt good to get out for awhile. I feel like there are things I need to be doing for Saturday, but I can't bring myself to go there yet.

I lost another 8 pounds since yesterday. I was actually able to put on my jeans this morning. Granted they are my "fat" jeans, but they are jeans and not maternity clothes. Thank God. For those keeping count, that's 33 pounds gone since Friday, and of course, that doesn't include the weight I lost the first two days I was on lasiks.

My first two hospital bills have arrived. Wow. I'm very thankful for the health insurance I took out on the last day of open enrollment, otherwise we'd be hurting. It's not pretty. BUT, at least I'm on the mend and finally home. I'm ready for this week to be over and to try to attempt moving on and finding some peace in all of this.

Waves

Today is my birthday. What a way to celebrate, huh? I'd like to just stay in bed with the covers over my head. Part of me just wants to disappear for awhile, remove myself from the world. Then, I get mad at myself for even feeling like that. I refuse to be beaten by this. At some point, I'll have to throw myself back into real life, face the new babies around me, and just put myself back out there. I don't know how that will go, but I don't see any other way around it. It eventually has to be done.

The chaplain at the hospital told me grief comes in waves just like the ocean. I might have mentioned this before, but I can't remember. Mine seem to be coming fast and furious building up to tsunami status. I do pretty good when people are around, but once everyone leaves and it's just the two of us (and Newton, of course), I don't hold it together too well. I will say, amazingly enough, that our little Newton has been good therapy. Who knew a little dog could help so much? lol We definitely don't like our "new normal," but unfortunately we're stuck with it.

On a brighter note, I seem to be getting stronger each day. Between Friday and Saturday I lost 13.2 pounds of fluid. From yesterday to this morning, I have lost 11.8 pounds. I'm not sure what I lost from the previous 2 days, but I would guess close to 20 pounds based on the several gallons I know I lost. They stopped weighing me 2 or 3 days before I delivered and I ballooned up a lot in those couple days. I keep thinking I'm seeing things when I get on the scales, but I can definitely feel the difference. The human body is definitely a mystery. It can take you to the brink without any known reason and bring you back just as fast.

Well, I think it's time for breakfast and maybe another nap. After all, it is still early.

Home

I got to come home yesterday afternoon. I swear I got in the van and saw all the dogwood and pear trees in bloom and just started crying. I am pretty sure I have never been so overwhelmed with life itself. The ride home wasn't easy. I hadn't sat straight up in a month. Mom had to stop at the rest area so I could go to the bathroom. That was an adventure. We made it though.

I slept better last night than I have since I was admitted. That being said, I was still up going to the bathroom every hour. The good news is so much fluid has come off me in the past 2 days. I'm still swollen, but I'm actually able to bend my legs a little now. Today is my first day off the lasiks, which is what got the fluid moving. I'm trying to drink plenty of water so it will keep moving.

This morning I had my first official breakdown, but I was due. I'm sure I'll have several more, but I really needed to get this first one out of the way. Everything is finally hitting me now. The reality that I truly might not have made it home, that I waited a week longer than I should have...but we had to give Josey a chance. Even though we pretty much knew the outcome, for our sanity we had to give it all we had.

I don't know what the next few weeks, months will bring, but I do know we have a lot of recovery coming our way, both physically for me and emotionally for both of us. I so just want to get up and be able to get things done that need to be done. Just move. But unfortunately, I can't do it, not yet anyway. I go back to the doctor on Tuesday. He'll check my labs and everything again. Let's hope it's continues to go in the right direction.

Another day down......

One more day

I was told this morning, pending nothing crazy, I could go home tomorrow. Dr. O'Brien actually told me I could go home tonight if Dr. Youkilis was okay with it, but I think he'll make me stay until tomorrow. Still, it's a start. I was allowed up today to take a shower. It felt like heaven. Thankfully there was a nice big seat in the shower. Otherwise, I wouldn't have made it. Physically, I'm starting to feel a little better every day. Unfortunately, none of my clothes fit. I'm still so swollen that even my t-shirts and big baggy sweatpants are too tight. It takes everything in me just to get up and walk two or three steps. They really wanted to see how I did with it today. Obviously, they don't expect me to just bounce back and go back to normal, but I guess that's what I keep expecting because it's driving me crazy. BUT, at least I can sit up and get up by myself now, even if it takes me ten minutes. If any of you that have been through this have any suggestions on getting through this part, please let me know.

Today

I've always heard bad things come in threes, I just never heard of that number being exponential. Our sweet baby girl didn't make it, and I'm still stuck in this hospital bed barely able to breathe from the swelling. But I also know there are a lot of other people out there hurting too. Fathers have passed on, jobs have been lost just to name a few. I'm so ready to GO HOME! When does it stop?

Today has been really really hard. Some of the physical pain has slowly started to subside, while leaving my emotional state really fragile. Well, let's just be honest - it's broken. I know many of you have asked about arrangements. We haven't been able to make any real plans since I'm still in the hospital and don't know when I'm coming home; however, Josey is at Northcutt & Son. We're planning on having a small, graveside memorial with family and close friends sometime after I get home. More than likely this will be next week sometime. I hope to know more about my condition tomorrow and then we'll let the funeral home know as well.

Please know that if we haven't answered your phone call or replied to your emails, it's not because we don't appreciate all the thoughts and prayers. WE SO DO. But for now, we just need some time for us and some time to process all of this and try to get myself well and get home.

Day 22

Today is probably the last day I'll be posting for awhile. I am being induced tomorrow morning. I was told the entire process may take a day or two. Although we've been waiting for this news, based on the early onset IUGR and the severe pre-eclampsia, the doctors have now shifted to maternal care instead of fetal. There really is no chance of fetal survival at this point and certain areas of my body are beginning to deteriorate; so, something has to be done.

Hopefully, I'll be home by next weekend and we can begin to try to move on from here.

Day 21

Today is bittersweet. I spoke with Dr. Barton this morning and things are finally starting to take that final turn. He is consulting with another doctor, Dr. Sabai, who apparently is internationally recognized in the field. I googled him. His name is everywhere, so I feel confident between he and my doctors they know what they are doing. Unfortunately, our outcome isn't going to be what we hoped for unless by some miracle she has doubled in size, but we have the comfort of knowing we've had the best doctors out there taking care of us and everything that could be done, was done.

On a more hopeful note, I spoke with Ashley this morning. Most of you have found your way here from her website. If not, Ashley is my cousin who unfortunately has gone through this very exact same thing, only mine has been a bit more in slow motion. She had a doctor's appointment this morning and informed her doctor of my situation. Her doctor was very surprised that this could happen in the same family like it has with us. Ashley and I are hopeful that maybe between both our cases, these doctors out there might be able to find something different that they didn't know they should be looking for or maybe even a new test. Obviously, that would be quite awhile from now, but if somehow, someway, Josey and Nolan could help save the lives of other babies and mommies in this condition, then that would definitely make us happy.

Please continue to keep us in your prayers. Keep Ashley and Chris in your prayers too as they get ready to try again, and keep our doctors in your prayers so that just maybe something good can come from all of this.

For those of you who haven't visited Ashley's blog and read her story, you can find it here

http://rubybaby09.blogspot.com/

Day 20

I can't believe I've been here 20 days. The past few have definitely been the worst. Not just for obvious reasons, but physical reasons as well. I have gained 17 pounds since I've been here, most of which has been in the past few days. I have to have help getting up, whether it be grabbing the bedrails or having someone pull me. It takes forever. Just in the past couple days I'm having trouble sitting up for any length of time. It just smothers me. I feel like a balloon that was just inflated. My sides stick out past my hip bones. It's ridiculous. If someone poked me, I'm pretty sure I'd pop. It makes being here a lot more difficult.

I'm supposed to have a ''free" day today. Then we'll start tests back in the morning. If I can stand it, I may go for a wheel chair ride today. I'll just have to see how the day goes.