Wednesday, March 31, 2010

Day 19

I know I've mentioned it before, but I'm so tired of this roller coaster. I honestly can say I will never get on another one in my life. This has been enough for a lifetime.

Last night I thought it was all over. I was so sick. Sleep didn't come until 4 this morning. Tylenol wasn't working and my doctor wouldn't give me anything stronger because it could mask the actual symptoms of pre-e. He wanted to be sure. So, I had to endure. It wasn't the worst headache I've had. I've definitely had worse; however, it lasted almost 24 hours straight and that's never happened. Then, late this morning it was gone. From listening to bits and pieces from the nurses, as well as the doctors, they were expecting it anytime as well.

I had another u/s today to check my dopplers and more blood work as usual. Once again, nothing had significantly changed. I really do respect the doctors that are working with me. Dr. M looked at me and in not so many words said, I know this is hard because we can't give you a definitive answer as to when things are going to happen. All we can give you is what we see today.

They have me prepped for delivery, whether it be emergency or planned. They've covered their bases and sent us every doctor with every piece of data out there. Once they are able to do another u/s to check for growth then we'll likely know when the 'when' will be answered. Unfortunately, they can't check for growth until probably Monday. So we sit and wait until then or until something else changes. What happens if she has grown you ask? Then, we sit and wait some more. Do you see now why this roller coaster is driving us crazy? Yesterday it's over. Today we may have until Monday or so. And then, of course, if she hasn't grown or grown enough, then the situation is still the same as earlier and we have to go through everything all over again. Our nerves are completely shot.

Tuesday, March 30, 2010

Day 18

The NICU stopped and talked with us last night. The bottom line is she's too small at this gestational age for much if any intervention, including steroids. Her current weight is only slightly more than the smallest known survivor and despite what the media reported with this child, the doctor I spoke with had spoken with this child's doctor and he or she has severe handicaps. The percentages of her surviving, even if she were to gain a little weight by the end of the week are practically nothing and out of the small percentage, 9 out 10 have severe handicaps that wouldn't give her any quality of life.

My condition is a little different than most. I have severe preeclampsia, but I also have something called IUGR. Because of the two, it's made it nearly impossible for a positive outcome. I'm not sure yet when I'll deliver, but it will be soon. We're just waiting to hear a little more from the perinatologist. We do know the placenta and the cord will be sent off for testing to see if by chance this was a chromosomal issue. If so, then this was my body's way of taking care of that, but of course, that doesn't make it any easier. If the placenta and cord prove to be fine and not show any sort of abnormality, then there's a 60% chance of this happening to me again.

Needless to say my blood pressure has been terrible. My meds have doubled and they've added more to my iv. I'm trying to just remove myself from the situation so I can get through the next few days. We're working through acceptance and trying really hard to be as strong as we can given the situation.

We want to thank everyone for all the wonderful prayers. I don't know how people can go through any traumatic event without their family and friends. It truly does help. Please continue to keep us in your prayers as we go forward from here.

Monday, March 29, 2010

Day 17

Well, it appears this may be my last week. I spoke with yet another doctor, who happens to be the "head" guy. Although he said many of the same things we had already heard, he was a lot more forth coming than the others. He's sending the NICU folks over to talk with us. He wants us to decide when it's time to intervene on the baby's behalf. In other words, once we speak to the NICU, at 25 weeks she would need to weigh x amount, etc. in order to intervene. He doesn't want us to get in a situation where things start to go bad and then have to ask, "what do you want to do?" He wants us to have all the facts before we make any decision. Of course, if she's not growing there's really not a lot to consider. No matter how long my labs stay stable, if she doesn't grow it doesn't matter. So, we're basically back where we were earlier this week.

Sunday, March 28, 2010

Day 16

It's too early to know what today will bring, but it's already started off eventful. (I say this sarcastically.) I gained 5 pounds since yesterday. I'm having a horrible time keeping my eyes open. I guess it all went to my face. Luckily, I slept well last night. I even had normal dreams. The couple times I woke up I actually for a split second didn't realize where I was. It was wonderful.

My blood work has already been taken. The doctor came in around 7 this morning. My labs are basically the same, which hopefully gives me another day. I suppose the steroid talk will be tomorrow, at least that's what my doctor yesterday said. It's hard keeping up with 4 different doctors. Of course, two of them are now on vacation. I don't blame them though. They are always here - day in and day out. I'm not sure how these people have any sort of life other than hospital life.

I honestly can't believe I'm starting on my third week here. The last two weeks seem to disappear in my mind, all but the bad news. At least it seems to have gone faster than I would have thought. I've said it before, but I'm truly, truly exhausted. I don't even want to get out of bed now. It takes everything in me to drag the iv to the bathroom, and changing clothes takes me at least a half hour to recover. Dad asked me yesterday how long it would take me once I got home to be able to walk across the house. I'd say quite a while. It will definitely be some time before I can lace up my zumba shoes again.

Saturday, March 27, 2010

Day 15

I guess I'm in a holding pattern. Last night was miserable. My bp went up and I had to have an iv. I still have it today and I guess I'll keep it. My doctor is gone on vacation this week. It's spring break here in Lex. So, I'm under the care of the PDC docs, which have basically been taking care of me too. I suppose one of them will be in today. Sleep didn't come until around 1 and then only at 2 and 3 hour intervals because the nurses had to keep coming in to check on me.

I really have no idea what today, tomorrow or this week will bring. I was told once yesterday it was pretty hopeless and then told again they were going to give me steroids tomorrow anyway. I am numb. I had prepared myself for the worst and had started to accept it the best I could. Now I've got a possible week of yesterdays to go through again this upcoming week. The hardest thing is knowing more than likely nothing will change, but then there's always that hope that you're wrong. The only chance I have is another possible week to see if she's grown. If I don't get that, then there's nothing that can be done and if I do and she hasn't grown then there's still nothing that can be done. Last week I was told I didn't have a week, but really I guess no one knows.

Friday, March 26, 2010

Another Dr Visit

This evening I had another visit from yet another doctor. I was told at this point as long as my levels stay stable, it would be more of a risk to me to do anything. So, we wait until something changes.

He said the same things the other doctor said as far as if something happens now, there's really no hope, but he wanted to go ahead and give me steroids on Sunday if I get there. He said it's possible she weighs more than what the u/s shows and that many babies born this early do have a chance, although a lot don't. Either way, he recommended nothing changes for now unless my labs change.


I was wrong. I made it to 10:30 before the bad news hit. I spoke with my doctor concerning where we are. At this point, we aren't growing and she's too small for even the hospital to consider trying to save. My platelets have dropped, although not to a dangerous level yet. However, at the rate of progression, I don't have too many more days. Being that's the case, there's not much else for us to do. I was told even if a miracle happened and I made it to 29 weeks, the rate of growth would restrict her and she would be so far behind mentally that she may not have much quality of life.

All I know at this point, is my heart really hurts. We're trying to be strong and just be thankful that I caught this when I did. Otherwise, I may have put myself at serious risk. Of course, that doesn't make this any easier, but we'll take what we can get I guess.

Day 14

More tests today. Of course, the tests they are running are more or less to see if I have some condition that can cause what's going on so that should we ever decide to get pregnant again, there are steps we can take to prevent this. I'm not so sure I want to go down this road again, but that's something we'll have to take up a lot later. Either way, it's nothing to help today's situation. I thought they had already run every test. My arm definitely looks like it.

I'm not sure what today will bring. It would be wonderful if it didn't bring anything. Normally, bad news always rears its ugly head before 9 or 10. If not before then, then usually late in the afternoon. I would love a day to just lay here in bed without interruption, but I also know the doctors do and say what they do not to upset me, but to keep me informed and keep me healthy, at least that's what I tell myself.


Thursday, March 25, 2010

Another Day

I'm embarrassed to say I'm a bit superstitious, so I'm changing up the title today. lol For the moment, we are stable. My blood work came back basically the same this morning. So hopefully no more changes today. My heart stops every time the door opens, especially when I see the doctor. Today is 23/4.

I was hoping to work some while I was here, but I can't focus my attention on anything at the moment, at least not until I get through this weekend. I know every sound the clock makes in my room. It changes tones between the 6 and 9 every time it goes around. The computers in my room make a beeping sound each time a doctor signs on from his office and forgets to log off his account. The wallpaper is starting to peel around the windows. I leave the tv on for noise, but I haven't watched too many shows. It's nice when I can get lost in something for awhile; it's just really hard to do right now.

But, here's to one more day.

**update**
I had another u/s today to check growth. Despite the fact she's physically healthy, she's just too small. More than likely if I even make it to Sunday, well, she's just too small. I feel like we're stuck in a never ending nightmare. If a woman's body isn't meant to carry a child, why in the world would it let you carry it for so long? My head is filled with all those questions everyone asks - how can these women continue to have children that don't even want them? how can drug addicts and alcoholics have perfectly normal kids, but I can't? I know I shouldn't ask these questions. There is no answer. I know I'm not at fault, but it doesn't make it any easier. It's just not fair. It's not fair that I'm not the only one this has happened to in my own family. It's not fair anyone should ever have to feel this way or experience this.

I keep praying for a miracle, but I also keep trying to prepare myself and not throw myself into denial. One way or another, we will get through this.

Wednesday, March 24, 2010

Day 12

Every day is a new roller coaster. I used to like roller coasters, but not so much anymore. The day started off on a fairly uneventful note, until the rest of my labs came back and I found out my liver is getting worse. Apparently, I may not even have a week now. I pray my body will cooperate until Sunday. I'm down right mad at the moment. I have a perfectly healthy baby and a miserable body trying to kick her out.

Please keep praying we can both fight just a little bit longer.

Tuesday, March 23, 2010

News

This morning I was told should I continue on the path I'm going, I may make it to 24 weeks/4 days. Of course, with this disease it could change over night. Or not. Either way, we're not really sure how to start dealing with this. We talked about it last night and have tried to prepare, but you never really can be prepared. Should we make it to next week, there may be a chance, depending on her growth. There's just really no way to know at this point.

Day 11

Boy, my face is starting to swell. It's not too bad yet, but I feel like one of those puffer fish. It's also starting to take everything I've got just to change clothes in the morning and try to walk to the bathroom and back. Who knew laying around all day could wear you out? lol I'm pretty sure I couldn't get through the warm-up song during zumba at this point. Not to mention my feet are killing me. My toes look like tree trunks. It's quite attractive.

I have more testing today. The lab came in around 5:30 for blood and at some point I am going for another ultrasound and to see the docs. Until then, I'm just going to try to relax and keep my mind off things.

Monday, March 22, 2010

Day 10

I'm feeling much better this morning; however, I just took my bp meds about a half hour ago so we'll see if I end up with another headache. If the meds work though, I can put up with a headache. I have had migraines since I was in 6th grade and chronic migraines for the past 6 years. I can deal with a 3 month migraine. lol

I have an ultrasound sometime today. To be honest, I'm really nervous. Praying for good news. Hoping everything looks good and my labs are stable enough to keep cookin'. It seems the magic date is April 25th. I'll be 28 weeks then. Obviously, the longer the better, but the doctors seem to be talking a lot about 28 weeks. So, basically another month would put me in pretty good shape pending no trouble. I'll try to give another update later today.

**update**
Well, I don't know whether to say I have good news or bad news or just plain news. Some of my labs are fairly stable, some have gone up and my ultrasound is still "abnormal" whatever that means. The u/s wasn't really for the baby, but more for me, e.g. checking fluid, the placenta, uterine growth, etc. The doctor has decided to give me progesterone aka the pregnancy hormone. Basically, a study was done on pre-term births and although the study wasn't involving pre-eclampsia, they found that most women who took the extra hormone who had pre-e or were on the verge, tended to stay fairly stable; however, it was given around 18-20 weeks. I am 23 weeks. Pretty much, they are just trying whatever they can to slow down the inevitable.

**update 2 @ 4:15 pm**
I have been officially diagnosed with pre-eclampsia.

Sunday, March 21, 2010

Day 9

Almost through another day. This morning I felt terrible, then I got a temporary reprieve and once again I'm starting to feel pretty icky. I have an ultrasound in the morning and should get the results of my 24 hour urine test.

That's all I've got for today. Don't really feel like typing too much.

Saturday, March 20, 2010

Day 8

Well, today hasn't exactly turned out the way I was hoping. I still haven't quite become pre-eclamptic, but some things have changed overnight and it's inching that way. We've started more tests and probably won't have all the results back until Monday. What a great weekend.

They've kept me completely in bed today, which means no wheel chair ride for me or a shower for that matter. Shannon and I have watched movies and napped. I wish I could sleep for about another 4 hours just to pass the day.

My aunt and uncle dropped by for a few minutes with charmin and charmin wipes in hand. That made me smile. It makes these 24 hour urine tests a little better. lol

I don't like the weekends here. Weekdays seem to pass faster. Even though I've said it before, it really is one long day at a time, and sometimes an hour at a time. I just keep waiting to wake up and this all be a dream.

Friday, March 19, 2010

Day 7...cont.

I was allowed out of my "prison cell" today for half an hour. Shannon was allowed to wheel me outside to sit in the sun. Who knew a few minutes outside could make such a difference? We also met another couple confined up here with us. The nurse brought them over to visit. She had her sweet little dog with her. I can't wait to see my Newton! She has been here going on 28 days. It was so nice talking to someone who knows what I am going through right this minute. I think it lifted both mine and Shannon's spirits to see she's made it to 34 weeks while here and gets to visit with her puppy dog. Yes, I know you may think that's silly, but I miss my dog. He's my baby too. :)

Still no news, so again hopefully no news is good news. The doctor stopped by while we were on our "walk" but our nurse said he just stopped by to check on me and to tell me hello. My bp has around the same range today; however, it can still stand to go lower. BUT, it was better than yesterday. Maybe another day of this new dosage and it will get even better, at least we hope.

I feel like I say that word a lot -hope. For now, it's what we hold on to, so you'll probably here it a lot more. Not sure what tomorrow may bring. Shannon's going to take me on another walk while the weather is still nice. I'm definitely looking forward to that already. Here's to another day.

Day 7

I've made it 7 days in this room. Can't believe it. lol Last night I dreamed my entire office worked as tellers at Trans Financial Bank (now US Bank). I wonder what that means? Random. I also told Shannon I need some toilet paper from home. He just laughs, but seriously people, this stuff is like sandpaper.

This weekend my cousin is getting married. I hate to miss weddings. If you ask Shannon he will tell you it's not the wedding I hate to miss, but the wedding cake. And he would be right. HA! We were talking the other day about how he had forgotten how excited he used to get to drive to Lexington to see me when we were dating. I would drive home on the weekends to see him and he would drive a couple nights a week to Lex to see me. So, we decided to just pretend we're dating all over again, except instead of a nice apartment and date nights, it's movies in bed and wheel chair rides around the hospital.

I hate to jinx myself, but so far today my bp has been a bit better. I have a slight headache and feel a little tired, but they tell me it's more than likely from all the bp meds. I haven't seen any of the doctors today, so I don't have any news, but I'm going to go on the old saying no news is good news.

I may have another post today. I normally type these up at night, but felt the need to write a little something this morning. Until then...

Thursday, March 18, 2010

Day 6

So I am trying to come to terms with the length of this stay. I really need to quit feeling sorry for myself being away from home and get over it. Home isn't going anywhere and will be there when I get out of here. There are several doctors on the case and I met a new one today. He basically gave me another come to Jesus talk. You know, the things you don't want to hear, but you already know. Of course, it's just so much harder hearing it from the pros. And it seems each doctor presents it differently. The one thing I didn't know was that my last labs had gotten a little worse, still not enough for a diagnosis, but enough for some worry. That, of course, was enough for another melt down.

My blood pressure also went up again, but how could it not when I have sat here in tears all day? How can they get an accurate reading when someone is already a mess? So, I laid myself flat on my left side and just went to sleep.

However, on a slightly brighter note, Dr. Youkilis came in not long ago and said my labs came back today and were a little better than they were. They are still not perfect. They are still elevated, but at least that's a good sign for now. He stressed again, it's a day at a time, a week at a time. He did increase my blood pressure medicine. I was on a really low dose, so he raised it slightly. Hopefully, that will start keeping my blood pressure in check.

Today, after all that, I finally truly understood that this isn't about me whining because I can't sleep in my bed or snuggle up with my husband. Not that I didn't already, but I think I may have been feeling sorry for myself and shouldn't have been. I may not be able to do much to keep this from progressing, but I can do whatever I'm told to prolong it from happening. Like they said, one day at a time, one week at a time. If I can make it to 24 weeks, each day gives a little more hope. For those counting, that's 10 more days.

Oh and GO CATS! :)

Wednesday, March 17, 2010

Day 5

Today has been an emotional roller coaster. I’ve had lots of wonderful visitors that definitely helped me get through the day. The hard part comes at night when it’s just me. I usually have my daily breakdown right about then. I suppose at some point I’ll numb up to it, but for now it’s still new and really hard. Maybe I shouldn’t be sharing this info, but for now it’s my way of coping.

I am looking forward to diving into a good book and maybe working some from my computer here in the hospital…anything to keep me busy and my mind off the obvious. Shannon (my wonderful hubby, for those of you that don’t know) has brought me several movies to watch, so I have something to watch during the day. Seriously, there is nothing on tv during the day.

Looking forward to the season premiere of South Park. Nothing like obnoxious cartoon kids to take my mind off of the present. Gotta love mindless tv. I might even indulge in some Maury tomorrow. Who's the daddy? LOL

Info

As most of you know (or don’t know), I have just been “sentenced” to bed rest for the rest of my pregnancy. I am currently 22 weeks/3days. A full term pregnancy goes just around 40 weeks. You do the math. Oh, and did I mention, I’m in the hospital? Yes, my bed rest isn’t at home, but in the hospital. Thankfully, all my nurses have been wonderful and I do have my own room. My doctors are great and one happens to be one of the best in his field. I know I’m in good hands, which makes being an hour from home a little more tolerable.


I haven’t been given a time frame for this stay. I have just been told I need to take it a week at a time. Obviously, the longer I can go the better. I’m trying my best to adjust to the thought of being here for that long, but I’m not quite there yet. It’s hard to understand how all this can happen so fast, which makes this adjustment so hard.


The good news is I’m not yet pre-eclamptic, although I am still at risk, which again, is why I’m here. The bad news is my blood pressure is still fairly high, but I have started bp meds and I feel positive that once they get in my system that my blood pressure will adjust. Also, so far baby Josey is doing good. She is about 5-10 days behind her gestational age; however, that is still within normal ranges. All babies develop differently and it’s entirely possible she’ll catch up, or not, but as long as she stays within the normal range that’s all that matters. I’ve been told I’ll have weekly ultrasounds to monitor her growth.


From here on out we just monitor, monitor, monitor and hope that my labs stay normal or semi-normal and my blood pressure continues to be stable or even go down. Thankfully, I have wireless internet and my lap top. So what better way to get through this then blog? I thought it would be a good way for me to get out what I’m feeling, keep folks updated and keep me sane. I’m thinking I may pick a topic each day to talk about, rant and rave about, laugh about or cry.


Please feel free to comment and share your stories. Welcome to my life. You’ve just been invited inside. LOL