Under Weight

I've never come in to dialysis UNDER weight. But yesterday was a terrible day. Jason and I either caught some sort of bug or we ate something bad. Either way, we felt terrible. I drank three cans of Sprite and two glasses of water and they all just came back out. So today they are not taking any weight off of me, just cleaning my blood.

Taking Longer

I was right, Jason called the hospital as soon as he woke up on Tuesday. They told him that it's taking longer because they are testing him and another person at the same time. They were supposed to call him yesterday, but they didn't. I'm assuming they didn't call the lady from work, either, cause she didn't call me.

I Wish

I wish I had some fun things to talk about. But everyone just comes in and falls asleep. And nobody talks or screams in their sleep here. There is the one guy who said all he had to eat yesterday was a bag of popcorn. That's a whole lot more than I had! Other than that, everyone is pretty normal. Kinda boring.

Three Weeks

It's officially been three weeks since Jason was tested. I expect him to be on the phone calling the hospital as soon as he wakes up today. He's so anxious. The longer we wait the more anxious I get. I want to be able to post that we've found a match.

Sunday's Treatment

I came in heavy on Sunday and they decided to take an extra half of a kilo off of me during my treatment. I started off feeling fine, but toward the end I felt terrible. I was freezing cold and achy. I wasn't cramping, just achy. It was the roughest treatment I've had in a long time.

Today my weight was good. So, we're still bringing my weight down a half of a kilo, but it shouldn't be so bad this time...I hope.

First Time in a Long Time

I had a bad night sleeping last night. For the first time in a long time I had trouble breathing. It was scary cause it felt like I did when I was pregnant. I'm not sure if it's because of my cough or because of the weight I gained. I gained 2.6 kilos (5.7 pounds). That's alot for me, but not alot for other people. Some come in up 8 or 9 kilos after a weekend. I could tell that I gained alot. I noticed it in my mid-section. My pants didn't fit well yesterday. That's odd for me. I usually notice the weight in my face. They are going to take off 3.6 kilos and see how I feel when I leave. In the meantime, I'm on oxygen...just like the 'good old days.'

Christmas

It was wonderful and difficult at the same time. It's hard to explain, but I'll try. Christmas Eve was just as normal. We went to my parents' house and opened gifts. This year we weren't able to give my parents what they deserve. They have done so much for us and we just couldn't repay them.

After that we went to church and then to my uncle's house. Again, we weren't able to buy the gifts we used to, so a couple of kids had their feelings hurt. I felt terrible. And after a $10 gift card exchange, Jason and I left with ALL of the gift cards. So nice, but I feel like a big loser.

Christmas morning was the best, and the worst, I think. Our Christmas Angel at school supplied nearly all of the gifts we opened. Alli was not at all disappointed and she kept saying all day that she had a great Christmas. But what kind of Mom can't buy her kids Christmas gifts? Again, I felt like a loser. I'm so gratful for all of the help that we've received this year. But I'm so proud. It's hard for me to take and not be able to give.

Although I know I'm being taught a lesson, it's a lesson hard learned. I know that I'm supposed to take help when it's offered and take it with a smile. But I want so badly to pay it forward. One day I will. One day.

Still Waiting

We're still waiting to hear from the hospital. We really should hear by this week. I just hope they haven't decided to take the week off. I'm not sure Jason will be able to wait that long.

Merry Christmas!

My lungs sound good, says the nurse. My cough sounds terrible. It's just a cold, no big deal. It's just irritating.

A Few Days Off

Yesterday was our last of school before break. I know I haven't been working much this year, but I'm as excited as everyone else to get a break. I still had to get up early this morning, but tomorrow I get to sleep in. I don't remember the last time I got to sleep in.

Since Christmas is on a Saturday my dialysis schedule is different this week. They are open on Sunday instead of Saturday. Same thing for New Year's Day.

No Word Yet

Jason called the hospital yesterday to see if there is any word on our tests. The lady told him that it's going to be one more week. My worry is that they will be taking next week off and we won't hear anything for a while longer. But when Jason told her that he wanted to use this as my Christmas present, she said she'd make a call and try to "light a fire." She said she'd try to call today. I think Jason and my friend from work are more anxious than I am. Can you imagine if we found out we had a match right before Christmas. Amazing!

Oh, This Cough!

Generally I'm feeling good. But this cough is killing me! I normally get a cough at the end of a cold, but this time the cough came on its own. I'm sleeping alright which is odd. But when I'm awake I'm a mess. They are looking at me here in dialysis like I'm dying. Sure hope not.

No Need To Rush

Today will be the first day that I have to run from dialysis in Delhi to school. But since I'm on an hour earlier, and since they are still running me on my catheter, I won't have to feel as rushed. In fact, since I have to take a half day off of work anyway, I'll have time to go home and take a shower before I head in. Normally I take a shower before I go to dialysis. But that would mean I'd have to get up at 5:00 am, and that's not going to happen!

Lots of Weight...For Me

I gained alot of weight this weekend. For me, anyway. I gained 2.5 kilos (5.5 pounds) over three days. I could tell by the way my jeans were fitting. I also woke up with terrible bags under my eyes today. Every time I got a tickle in my throat I had to take a drink. I had a hard time watching my fluid intake.

Over Two Weeks

It's been just over two weeks since Jason and my friend at work were tested. We're supposed to hear something in two to three weeks. She promised to call me when she hears something. I told her to call at ANY time. I sorta hope it's Jason that's a match. That way we don't have to inconvenience anyone else's family. It'll be a rough summer for us. But it's been a rough year, so what the heck.

Nice People

Dialysis in Delhi is nice. When I was set to leave on Thursday the snow was coming down really hard. And when I got out to my car I realized that I didn't have a scraper. So, I found a piece of cardboard to brush off the powdery snow. I sat in the car with my defrosters on waiting for some of the ice to melt down before I took off. But this older man who was dropping of his wife decided to scrape my windows for me. I'm sure he thought I was crazy for not doing it myself...or else he thought I was helpless. Either way, it was nice of him to help.

I also recognized another lady who was dropping someone off. She goes to our church and she gave me a look like "What the hell are you doing here?" I only said "hello" so I'm sure I'll have to explain sooner or later.

Now that I'm closer to home I guess I'm going to start running into more people who know me. My nurse today said, "So, I hear you're a teacher at Oak Hills." That's usually followed by, 'Do you know...?' She mentioned her son's name and I didn't recognize it. I explained that I haven't been in school for very long and I'm still learning names. But, I looked him up and there he was in my first bell. She didn't seem offended that I didn't know him. "He's really quiet," she kept saying.

My Own Bag

The hospital used to get patients a blanket and pillow when you want one. Not here, you need to bring your own. But, they gave me my own dialysis bag with a blanket and pillow that I can keep in my trunk. It also had some headphones for the TV. Everyone has their own bag when they come in. It's like we're in our own little club. Cute.

Ms. T

It's harder to know people's names here. At the hospital we each had a box of supplies with our names on them. They have a different system here. But I'm going to call the crazy old lady from last time Ms. T. She's not as crazy as I thought. She's really nice. I found out today that her husband died of sinus cancer. I've never heard of such a thing! She's been living alone since 1981. No wonder she has such a strong personality. You've got to be tough to be able to take care of yourself for that long.

A New Adventure

Today is my first day at the DaVita in Delhi. And it was a pain getting here! We woke up to about 2 inches on snow. The roads in my neighborhood weren't good, and Delhi Pike was worse. It took me about 15 minutes to get here. I think it would normally take 5. Good thing, cause I have to be here really early! They can get me on at 6:15 am. And today I was the only one here at that time. They got me on a little early, so I should be done before 10 am.

The Unit seems very similar to the one in Gatlinburg. There are about 12 chairs and a couple of beds. Each has a television, but these are mounted on the ceiling above each patient. I have a remote control at my chair kind of like in a hospital room. The sound comes out of the remote. I tried to use my ear buds but they didn't work.

I spend most dialysis treatments watching the Today Show. I realized today that coming in an hour early means I don't have to watch Hoda and Kathie Lee anymore. Hooray!

Anna's Doctor Visit

Anna had her 4 month check up yesterday. She weighs 11 pounds 2 ounces. Everyone is really pleased with how she's doing. Her length and weight is right in line with a 2 month old (her adjusted age). Her head is a little big, but she comes by that honestly. She comes from a long line of big-headed family members. She is doing things that I remember Alli doing when she was 2 months old, so I'm happy.

Anna had two shots yesterday. And she didn't cry with the first one. I was very surprised. But the second one did her in. I think her legs were bothering her last night after the shots, too. I gave her some Tylenol and that sort of settled her down a bit.

Back To The Unit

I think I might end up having some good stories about people here in the Unit. A strange looking old lady just came in. She seems to be in her 70's. She has long white hair passed her shoulders. She's wearing snow boots with heals on them, and having a hard time walking in them. She placed two Dumb-dumb suckers on the chair next to hers. I guess she's leaving them for a friend. And now she just waved her fist at one of the nurses, not in anger, but to be funny. She's going to be fun, I can tell!

One Last Time

I got a call yesterday saying they can take me at Delhi. In fact, today is my last day here at the hospital. I was excited, but sad, and shocked that it would happen so quickly. And I wanted to give the staff here something to thank them for everything they have done for me. So, Alli and I made some cookies and chocolate covered pretzels last night. I was pretty emotional last night. Less so today, which is odd. One of the nurses said, "We don't have many people like you here. We have lots of old people who scream and poop their pants." I guess they might miss me. I'm pretty easy.

Anna

Anna is officially four months old, but her adjusted age is just two months. We were looking at some pictures of Alli last night and it seems that Anna is doing things now that Alli did when she was two months old. She is smiling more and more, and even coo-ing at times. She slept for nearly twelve hours last night. And Alli's pictures look just like Anna. At Anna's baptism on Sunday, most people couldn't believe how much Anna looks like her big sister.

Baptism

Sunday was Anna's baptism. It was a great day. I can honestly say that I wasn't sure we'd make it to this special day. We even though about baptising her while she was in the NICU just in case. But we made it and had a great day. We had nearly 50 people at church and back at the house. City BBQ did the food and it was great. We ordered just the right amount. We have some left-over chicken which I'm planning on making into different meals (chicken fried rice, chicken soup, chicken ala king, chicken enchiladas, etc.) Sounds like Forrest Gump.

Thanks to Martha and Kevin for their help on Sunday. What great friends!

Busy...Stress...Good Pressure

Wow, this week has been busy and stressful. We had something to do every day. And we're not done. After dialysis today we have lunch with Santa. Jason's got a bowling tournament all day. We have to, some time, find time to clean the house before the Baptism on Sunday. We'd like to clean up the basement so we can have people play pool and ping pong.

But my blood pressure is good. It's much better than it's been in a long time. I feel better, too.

I got a call from Davita in Delhi. They might have a chair for me at 6:00 in the morning. It's an hour earlier, but I will still have to take half days off on Tuesdays and Thursdays. But my drive time will be cut in half. Yes!

Time and Meds Adjusted

My blood pressure has been really high. When I came in on Tuesday it was 200/115. So the nurse told me to say something to the doctor. I did and he decided to double both of my blood pressure medicines. And I think it's working. The past few days I would say that I don't feel wound quite so tight. And I haven't had a headache in a few days. Who knew that your kidneys had so much effect on your blood pressure?

One test that they do monthly is to test for the bad stuff in my blood BEFORE treatment and then again AFTER treatment. Then they find a percentage that represents how clean my blood got. It's called the URR. It needs to be above 65%. Mine was 75% this month which means my treatments are working well. So they decided to lower my time from 4 hours 15 minutes to just 4 hours. It doesn't seem like a lot, but it's enough that I'm not as rushed getting to school on time.

Good stuff.

This is the Test

The test we're doing this week is the one that tells us if we've found a match. And we'll know the results in 2-3 weeks. The potential donors will be contacted when the results come in and they will have to decide what they want to tell me. If they are a match and change their mind about donating they can tell me they are not a match. I'd rather think they are not a match than have them worry about telling me that they changed their mind. Of course, I would never blame a person for deciding not to donate. What a huge commitment!

So, Jason gets his blood drawn today and a co-worker and I had ours done yesterday. Hopefully one of them will be a match and then things move rather quickly. The donor will need to have a physical, an EKG, an ultrasound of their kidney, and will need to meet with a social worker. And I'm told most of these appointments can take place on the same day.

If my co-worker is a match, we'll have the surgery when she wants to. It'll be 100% her call. If it's Jason, then we'll do it in late May or early June. That way I will not need to take any more time off of work. The recovery time for me will be 12 weeks. I should be ready to return to school in August if all goes well.

Two to three weeks...Merry Christmas!

I Can See a Light

I keep saying that it's hard to see the light at the end of this very long and dark tunnel. But Thursday was a bit of a break-through. Not only are TWO people getting tested early next week, but other good things are happening.

First, they sent my paperwork to DaVita in Delhi. I might get to start dialyzing closer to home. It would cut back on my travel time tremendously! Plus, they get people on at 5:00 am. That's two hours earlier than here at the hospital.

Next, we're discussing HOME dialysis. There are two different kinds, but both can be done while I'm sleeping! AHH! That means I could work full days every day! Everyone keeps saying I'm a perfect candidate for home dialysis. I guess you need to be half-way intelligent and highly motivated. I'm definitely motivated.

I've sort of been floating on air the past few days. I can see a light at the end of this tunnel. It's just a glimmer of hope, but without hope I might not be able to make it.

Kidney Doctor

A nurse told me today that my kidney doctor said he felt like a grandpa when Anna was born. I can't believe I haven't sent him a thank-you yet. Of all of my doctors, he's been the one that's always been on my side. Guess I know what I'm doing during dialysis today.

Moving Right Along

I have an appointment to have some more blood drawn at Christ. A lady at work, a wonderful, kind lady, has made an appointment to see if we are compatible. She was told over the phone that if we aren't a perfect match then there are lots of medications that I could take to prevent rejection. I'm so excited!

Also, Jason got a call. The coordinator wants to talk to him about the next step in transplant. He's going to try to get an appointment on Monday or Tuesday. I think that we have to have our blood drawn within 24 hours of each other. I'm nervous about him trying to donate. I know that we'll both need help after the surgery. My parents said they'd take the girls for us while we recover. And I'm SURE there are tons of people who would come sit with the two of us. But, I worry. Of course I do...I've always been a worrier.

Bye-Bye Social Worker

I got a letter from my social worker today. It said that "it would be in both of our best interest" if she no longer handled my case. You think! I tried to request the other lady for this trip anyway. Not sure why I was stuck with this one again. Thank goodness!

Lost

I think I lost my phone. I can't find it anywhere. I feel so lost. Most of my doctors have my cell number. Hope they'll try my home number, too.

Blood Pressure

My pressure has been crazy high, so my doctors increased one of my meds. When I came in today it was much better. And it's only been one day of the increased meds. Yeah!

Glad To Be Back

It was nice to get out of town. Stressful, but at least I got to go on a little vacation. Saturday afternoon was the best. Jason, Alli, Anna and I got to go down the mountain by ourselves to have lunch and do the touristy stuff. We bought the girls each a magnet and Alli got a piece of rock candy. She was a mess...but she had a great time.

Missed an Extra Day

Since I have a social worker who can't do her job correctly I had three days off dialysis. Normally the most I skip is two days over a weekend. I was afraid that I would feel terrible by today. But I'm okay. It's hard to explain, but I don't feel refreshed and amazing, but I'm not sure I ever do! I'm tired and a little worn down, but not terrible or sick.

Back to My Arm

I was running on my catheter for two weeks. Now I'm back on my arm. The nurse numbed me first, but I think she stuck me wrong cause one of the needles hurt like hell going in. I'm glad I was on my catheter in Gatlinburg. The don't offer numbing at that unit. Yowzers!

Good News!

I got a call from Christ Hospital yesterday. They need me to come in for another blood draw for a donor match. It seems that one of my potential donors has stepped up and is moving along with the process. This is the test that has to be done within 24 hours of the other person's test. They are only there until 3:30, so it'll be tough not to miss school. But I'm sure I'll be able to find someone to cover my last class so I can leave a bit early. I'm waiting for a return call to set up the appointment. Yeah!

Did I Mention...

That my social worker is an idiot? Yes, the same lady who screwed up Florida. She's an idiot. She called when we were already in Tennessee to tell me that I'm dialyzing on Friday instead of Saturday. No big deal except I'm going to skip 3 days instead of 2 days. I'm not sure how it feels yo skip 3 days. She told me to watch my fluid intake. Hope I feel okay on Monday.

Thanksgiving

It's been nice so far. Everyone's really excited to spend time with Anna. She was great in the car, too. She blew up about a half hour before we made it to the cabin. I probably would have, too, if I was strapped into a car seat for 6 hours.

The cabin is nice. Perfect size for the 13 of us. We had a great Thanksgiving dinner. It was all-you-can-eat served family style. There was turkey, prime rib, pork chops, green beans, mashed potatoes, gravy, and stuffing. Alli loved the baked apples and kept saying it was the best meal she's ever had! I'm so glad.

Dialysis

I'm here now. We only got a little lost, but we made it on time. This unit is nice. I have a touch-screen tv. It's like one of those game systems on the end of a bar. I'm typing this on the tv while listening to 80's music on satellite radio. There are game that I plan on playing, too. The chairs are heated massage chairs. Amazing!

There are only three or four other people here. They are alot more normal than the people I usually run with. The nurses keep coming over because my blood pressure is running high. They're nice. I guess if I have to run then this is a nice place to do it.

I'm Thankful

So much has gone wrong lately, but I'm trying to think of all the things I'm thankful for. Here's a short list:
Jason, Alli and Anna
Mom, Dad and Brian
Anna's doctors and the Good Sam NICU
Kidney doctors, my OB, and the dialysis nurses
My co-workers and friends
and recently, Cap'n Crunch

Happy Thanksgiving!

A Real Vacation

On Monday, Brenda gave me the address of the place I'm going to dialyize in Gatlinburg. Today's the day we leave. I still haven't convinced myself that we're really going. I still have "Florida" on my mind. But now that I'm not pregnant my options are a little different. If I go and don't get dialyzed then I'll probably feel kind of crappy, but I won't die. I could always ask them to take off an extra kilo today and not be too worried about it all.

But, I'm assuming everything will be okay when we get there. I'm scheduled for 11:45 am on Saturday. So, I'll miss the afternoon fun, but be back in time for dinner. It should all be fine.

Treasurer Meeting

I had to meet with the District's treasurer yesterday to discuss my pay. I was a nervous wreck. I didn't sleep the night before and had a terrible stomach ache all morning until I saw her. And there was no reason to be upset. She just showed me what my pay would be for each paycheck for the rest of the year. And my insurance is fine...no need to worry. I accumulate 1 1/4 sick days a month, so I will only need to take 2 3/4 unpaid days a month for dialysis. Could be alot worse. She said that if I get a little bought of something and need to take a couple of days off then I'll need to write a letter to the School Board requesting unpaid time. But let's keep our fingers crossed that that won't happen!

Busy Days

Today and tomorrow are conference days at school. But I was told by my principal that I didn't have to worry about conferences this year, so I have lots of things planned.

I have dialysis this morning. It's on Monday, Wednesday and Saturday this week because of Thanksgiving being on a Thursday. So, I'm going to go home and change my clothes before conferences. I'll get there a little late, but no worry. Conferences are until 8:00.

Jason and I will leave a bit early because we are scheduled to meet Alli's teacher at 8:15. I'm excited to hear what she thinks about Alli's progress in school. Academically, she's great. I already know that. But I'd love to know how she's doing socially. I want to make sure she's sharing and getting along with others. Alli makes it sound like she's got lots of friends, but we'll see what the teacher says.

Tomorrow I have to pack for Gatlinburg. I'll need to pack for myself and the girls. That needs to be done before I meet with the District Treasurer. She wants to talk about my pay. I'm nervous about that. Then I head to conferences, again, until 8:00.

Wednesday morning is dialysis again and then we'll leave for Gatlinburg when I get off. I hope the ride is relaxing, but I've never been in a car for 6 hours with a 5 year old and a newborn. Anna usually falls asleep in the car. Let's hope.

I'm looking forward to a relaxing week in Gatlinburg. I hope it will be, at least. There will be so many people there willing to take care of Anna and Alli if I need a nap or something. Jason thinks the grandparents will offer to watch the girls so we can go out one night. Not sure about that. I think they will want to go out with us. Fun.

Back to the Catheter

So, I guess we're using my catheter again. At least we have the past two treatments. My arm is a bruised mess and I think that they are afraid to use it. Fine with me. I can get on and off quicker. There's no need to stop the bleeding. They can just cap me off.

My blood pressure has been crazy high. It was 183/115 last night...crazy high! They are starting to think that I might be losing weight. Since they keep my dry weight the same (59 kgs) that would mean that I'm carrying less mass and more fluid. Extra fluid causes high blood pressure. [I can't imagine that I'm losing weight. I haven't been this light in my life. We had to go shopping for pants last weekend before I started back to school. I've never worn a 4 before.] I might need to increase my blood pressure medicine. I guess I'm sill taking a pretty small dose.

I'm a little frustrated with the whole transplant process. The coordinator called me the other day (after I called her more than once). She told me that there are two other tests I need to take care of. There was no mention of these tests four weeks ago when I had my blood taken. It's no big deal, but just annoying. The doctors here at dialysis suggested that I call her every day and bug her to get this process moving forward. One doctor wants me to get a fistula in my right arm and the other doctor thinks that crazy. Why should I do through that process again if I'm going to get a kidney? So, I told the coordinator this and she said "we'll see what we can do." We'll see.

Jason gave blood yesterday. He's O-. I knew he'd be an O. But I don't think they'll let him give me his kidney because of the girls. I know that my parents would help us. My mom even said the girls could live with them until we recover. But the question is, what if something happens to both of us? I think that's the main worry.

Working While on Dialysis

I had to return to work right after dialysis on Tuesday. It was the first time, and it was okay. Of course, for the first time I had blood splattered on my shirt. Since I already had someone pass out on Monday, I had to find another shirt to wear before I went in. Note to self: Always pack a change of clothes!

I got to school with 3 minutes before my class started. It was raining, so the drive took longer than I expected. I parked BEHIND two other cars since there were no spots left and it was raining. And I think I was so rushed that I didn't have much time to think about how I was feeling. I made it through the day and when I got home I had a terrible headache and fell asleep. Sorry, Kelly W. I fell asleep while your daughter and Alli were playing in the house!

My headache continued through the night and I even woke up with a headache early Wednesday morning. But other than a headache, I'm okay.

More Bad News...

The doctor isn't happy about my arm. He's really leaning toward having me get another fistula in the other arm. Yesterday I noticed that my arm is bruised all the way up by my shoulder. That's not normal since it's nowhere near where they stick me. That means something is going wrong when I'm running. Great.

And I got an email from the District Treasurer who wasn't aware that I'm coming in late two days a week. She's concerned about "how we will do [my] pay going forward because of [my] sick leave balance." Super. This doesn't sound good to me, but I'm going to meet with her on Tuesday to see what's going on. My principal is still on my side and offered "whatever" I need. We'll see. It seems there is an exception to every rule, and I just think that I'm a serious exception.

Prayers

I sent an email to my students' parents introducing myself and explaining (briefly) my situation. I received several response telling me that they are praying for us. The best email came from a woman who said she's been praying since May for an expectant mother named Kelly who is in kidney failure. She said that her name just showed up in her prayer box at church. Small world...amazing God.

Back to Work

Yesterday was interesting. It was my first day back. I wasn't very nervous. I've had a priority shift as you can imagine. So going back to work didn't stress me out; it can't.

It was really nice to see my coworkers. Everyone has been so great and supportive. I tried to talk with my students about my situation and about dialysis. But, with one mention of "needles" and "blood" one of my students hit the floor! She totally passed out and fell out of her chair! I could not believe it.

Then, later in the morning I was moving a box from one shelf to another and it fell. It hit me in the face and now I have a huge fat lip with a blood blister on it. There is a bloody mark from my tooth. too. I thought about packing up and going home after all that!

But the afternoon was great. Jason always sends me flowers on the first day of school. This was my first day of school, and there were the flowers. So nice. An anonymous family at school has asked if they can adopt our family this holiday season and "take care" of Christmas for us. I can't believe it! They usually adopt a family through their church, but this year they want to help us. I can't believe it! And they want to remain anonymous, so we may never know who our Christmas Angel is.

Finally, my last three classes were upper-classmen and seem like they are going to be lots of fun. They were very interested in my story and very interested in dialysis. They asked great questions and were very sympathetic. I'm looking forward to getting to know them as the year moves on.

We'll See How it Goes

Today is the day I'm nervous about. I'm on dialysis now and need to be back at school by 12:30. It shouldn't be a problem since they said I could come to the hospital at 7:00. But the nurses were in no hurry this morning. I got on around 7:15 and should get off around 11:30. That leaves enough time to stop bleeding and to get to school. We'll see how I'm feeling, too. I sometimes feel really worn out and other times I can make it till around 4:00 before I start feeling bad. I'm going to take some Tylenol even if I feel okay, just in case,

Lots of Blockage

I had my arm worked on yesterday. I told them to give me more medicine this time since I felt everything they did last time. It was much better.

It turns out that there were several blockages in my arm. One place was 90% blocked, two were 70% blocked and several others were 20-30% blocked. I could tell they did some serious ballooning cause my arm hurts today. And now that I'm running, my pressure still isn't great. It's still higher than it should be. It worries me because the doctor mentioned that if we can't get this figured out they might have to put a fistula in my right arm. I will be pissed! I have a feeling they won't take the left one out first. I don't know if I can handle two fistulas.

Stupid Arm

I hate my fistula. It sounds great...that's what everyone keeps saying. But the pressure is too high. And it's always high, so it's not just a bad stick that's causing a problem. So the doctor wants me to have it "ballooned" again. That's tomorrow. He said that if it doesn't work this time then I'll have to see the surgeon again. I'm not sure what that means...fix it, take it out, replace it with a graft? I do know one thing. Last time I had it done I could feel everything they did. I was given some medicine for the pain, but it didn't work. I was also supposed to get some medicine that sort of makes you forget what happened. Obviously, I still remember. And they didn't give me any pain medicine when I left. I need to make sure they know I was uncomfortable last time.

Sleeping Beauty

We fed Anna at 6:30 last night and she fell asleep around 8:30. She didn't wake up to eat again until 4:30! It was amazing! I'd love to think that this will continue...but I know better. Alli slept the whole night once and then it took several months for her to do it again. Here's hoping!

6 Days

I go back to work in 6 days. Yuck. I will work for one normal week (all day Monday, Wednesday, and Friday and afternoons Tuesday and Thursday). Then it's conference week. So I'll work Monday and Tuesday and then it's Gatlinburg for 5 days.

Yep, she told me for sure that I'm set for Gatlinburg. I have an 11:45 chair time on Saturday. It's the only time I'll need dialysis while we're down there. I'll just miss one afternoon of Shattuck-family-fun and be back for dinner. Not bad, I guess. I'm just glad to be able to get out of Dodge for a while.

Mr. B

Mr. B is a man in my pod. A week ago he just wasn't himself. He was talking about the helicopters outside his window (they were apparently blue and red and black). THEN, he talked about the rattle snakes here in the Unit. He looked at me and said, "You're still here? The gorillas haven't gotten you yet?" And he hasn't been back for a while. I guess he had pneumonia and when he has an infection he goes a little nutty. I'm glad he's back to normal.

RIP

It's been a while since I spoke about Martha. I haven't seen her since I had Anna and started coming on Tuesday, Thursday and Saturday. A nurse just told me that Martha passed away. She always called out, "Lord, help me." She won't have to yell as loud from now on.

Also, Claire passed.

They lost four people this week.

Sad.

Bigger Needles

I came in early today because we have people coming over this afternoon. I'm surprised that they were able to put me on before my schedlued time. The nurse used a larger needle this morning. Our thought is that with a bigger needle we can run the blood flow faster and I won't have to run as long. But he had trouble with one of the needles, so I've got one in my arm and one catheter running. I told them not to bother digging around with the second needle. I'd rather get out as soon as I can.

Reflux

Anna's been throwing up alot so I brought her to the doctor yesterday. They checked her weight to make sure she's still gaining. And she is. She's 9 pounds 11 ounces! Still smaller than some babies I know when they were born. The doctor thinks its reflux. So she's starting a prescription for Zantac. It tastes terrible...yes I tasted it! It's pepperminty. Not really a flavor that a baby is used to. She has to take it three times a day. Poor thing.

Back to Work...Soon!

I have 11 days till I go back to work. I'm not excited about it at all! I first got sick in May and haven't taught since. So I've really been off work for 6 months. It's hard to believe it's been that long. In some ways it's been the longest 6 months of my life.

I felt the urge to buy a lottery ticket yesterday. I guess I feel like I'm due for some good luck. Not so much this time. Not a winner.

Anna seems to be a little more alert these days. She's been looking around and following us with her eyes. Her neck is getting really strong, too. But she has been spitting up alot. It's been about a month that it's been happening. About 2 hours after we feed her she'll start gagging. Poor thing. We go to the doctor next week so we'll see what he says. She's still gaining weight, so it must no be that big of a deal, I guess.

Ready for Normalcy

What is normal? I know we all have a different normal...but I'm ready to get back to my old normal. This new normal is getting to be overwhelming. I only have dialysis this week, no other appointments, but it's still too much. I'm ready for normalcy. Plus, I have to start thinking about going back to school soon. I have less than two weeks left. Just working would be no big deal, but working and dealing with dialysis is going to be tough.

I still haven't heard directly from the social worker about Gatlinburg. The other one said she got the call several weeks ago. Not sure what she's trying to prove by not telling me. I don't like her.

Fluid Intake

I asked how much is normal to gain over a weekend. I was afraid I was gaining too much. The nurse said most people come in having gained 7 or 8 kilos. That's 15 to 18 lbs. Holy Moses! I gain 2.5 kilos at the most. Sometimes I only gain 0.5 kilos. I guess I'm doing pretty well. I might start drinking more. I'm tollerating my treatments well. The only problems we're having is with my arm. They blew it out last Saturday before they could use it. Then on Tuesday they had to take one needle out in the middle of the treatment because I kept setting off an alarm. My arm is a bruised mess.

No Appointments

We have had no appointments this week...and it has been amazing! I've been able to get Alli to school on Monday and Wednesday (and Friday, too) and come home to work around the house. Last night, that included plumbing as our kitchen faucet blew up. Have you ever had to do work under the kitchen sink? It's a tight squeeze...and very uncomfortable when water is dripping on your head! I did all of the laundry yesterday, too. I was very productive. It's nice to be able to get things done.

It's still hard to get things done on dialysis days. I'm pretty run-down in the afternoon. Plus, I don't get home till nearly 1:30 and then I get Anna from my mom and pick up Alli from school. It's no wonder I don't feel like cooking on those days. I'm so lucky to have all of the gift cards from people at work. Again, I work with some amazing people!

I'm set to go back to work the week before Thanksgiving. I'll still need to miss a couple of mornings for dialysis. They are set for that. My principal keeps telling me to "take it easy" when I come back. We'll see.

Poor Claire

There's an old lady who is usually next to me each day. She's had two hip fractures and recently came down with pneumonia. The doctors suggested she take herself off of dialysis. They can't help her anymore. Hospice is involved. Sad.

OOT

One of the social workers came over to tell me that she got a call from the unit in Gatlinburg. They were calling to tell her that they have a chair time for me over Thanksgiving. So, I get to go out of town! She told them not to give us a time unless they were 100% sure and explained the stupid Florida situation. They were very sympathetic and said I'd love it there. It's a new unit and supposed to be lovely. We'll see...but at least I get to leave town for a while. Yeah!

Did you know that pumpkin patches aren't open at night? We drove all over the place trying to find one. We ended up at Biggs. Sad, but they did have a great selection of pumpkins. Alli got to climb on bails of hay to find the perfect one. We didn't take any pictures....cause we were at Biggs. But we'll take some before and after we carve them.

I tried to prepare dinners for the week on Sunday. We've been eating out on dialysis days cause I feel crummy. I made three chicken casseroles: chicken with rice and broccoli, chicken with noodles, and chicken with tomatoes, green beans and couscous. I made them up. We'll see how they turn out. If you know any easy casserole recipes, send them to me.

Anna's Eyes

Anna's eye exam went well. She screamed more than last time. The doctor said the older they get the louder they are. Makes sense. But there is no more immaturity in her retinas. Yeah! We go back in 6 months because there is a high likelihood that preemies can be nearsighted early on. With both parents wearing glasses both of our girls will probably need them no matter what. Poor kids.

Yesterday, three people commented on how skinny I am after just having a baby. When I said that I had medical issues and didn't gain much weight they were mortified for having made the comment. Goes to show that you should hold your tong because you never know some one's situation.

Cardiology Update

I saw the cardiologist again yesterday. It's the first time since Anna was born. Not to scare anyone, but in August the words "congestive heart failure" were used. I know. But things are looking much better now. There is a certain flow rate that is normal between 50 and 55%. In August mine was 38% and now it's 44%. It's improving. And the doctor said if we can get my blood pressure down then it will get even better. So we're raising my dose of blood pressure medicine. And she says that if my kidneys were okay then my heart would be fine. So if I get a kidney then it'll get better.

Anna's Eyes

Tomorrow we get Anna's eyes checked again. I hated it last time. They'll dilate her eyes and then use the metal wires to hold them open to examine them. She screamed and I wanted to cry. Anna's more alert now so it might be worse this time. We'll see.

Pumpkins

I have dialysis on Saturday and Jason has CPR training, but after that we're going to get pumpkins for the family. We love going to Turpin Farms. Alli's really excited.

Amazing!

I grew up with a girl whose brother had a liver transplant several years ago. Their family was helped out by an organization call The Life Center. Scott passed away about a year ago and the family decided to do a fund raiser this summer in his honor. I was shocked yesterday when I found a card in the mail that included a check for $1,000. We are so grateful. Since Jason is student teaching we'll be able to use this money to make a mortgage payment.

I don't think I realized how many special relationships I've made in my life. It really is sad that it took all this for me to see it.

Last Tests

I had my last test for my transplant work-up yesterday. There were two skin tests and several tubes of blood were drawn. I also got a flu and pneumonia vaccine. The blood work will take three weeks and then we will meet with the surgeon. If I don't have a donor by then, then they will place me on the donor list.

In then beginning I was really nervous about having a transplant. Now I'm just anxious to get it done. I had a dream last night that I had it done and it went well. I remember hearing "we have pee!" Apparently that's a good thing to hear when you're on the table.

I can't wait until "we have pee."

Officially +1

Yesterday was October 15th...my official due date. So, Anna is officially +1 day old. I can't believe it's been 9 weeks. It really does feel like an eternity. And we are so pleased with how she's doing.

I was thinking the other day about how busy I used to be with medical appointments. I would sometimes have 3 appointments in one day. Things haves settled down a bit, but I still have lots of appointments. On Monday I will have tissue typing and vaccines, Tuesday is dialysis, Wednesday I'm with the cardiologist, Thursday dialysis, and Friday to Children's to have Anna's eyes checked again, and dialysis on Saturday. It would be nice to be able to sleep past 6:30.

One Last Test

I called last night to make an appointment for my last transplant work-up test. This is for tissue typing and vaccines. I'm pretty sure that the tissue typing is just more blood work. I'll get a flu and pneumonia vaccine since I'll be more susceptible to infection after the surgery. Then we'll meet with the surgeon and hopefully get me put on the donor list. That way if we can't find our own donor then maybe we'll be lucky enough to find a match that way.

Anna's Check-up

I thought she was about 7 1/2 pounds. But, how about 8 pounds! Yup, 8 pounds! I couldn't believe it. She's at about the 50th percentile for weight and a little under that for length. She's growing, and we're excited.

Dialysis Update

I'm only gaining about 1.5 kilos between treatments which is nothing compared to others. The nurses and techs are still surprised that I run for 4 1/4 hours. I only weigh 130 pounds...there's nothing to me! But the doctor explained that he wants the blood flow to be 450 for a couple of weeks before he'll reduce my time. Today the flow rate is 250, so I think I've got a way to go. Apparently they can only go to 300 with the size needle they're currently using. I hope they'll start with a larger one soon. I really want this catheter out of my shoulder and we can't do that until the fistula is all of the way ready. Soon...

When I started coming only 3 days a week I was having some rough afternoons. I was tired, run-down, and I would need a long nap to recover. I'm getting used to it now. Although I had the worst headache after treatment on Tuesday. I'm sure it was because I was dehydrated. Guess that means I should drink more...yeah. I drank alot of water yesterday and my weight was good.

I did get a report on my labs this week. My protein level is finally increasing and is actually considered "normal." I'm no longer malnourished. My calcium and potassium are "normal", but my phosphorus is still really high. Really high. I'm still drinking too much milk. Who would have thought that milk would some day be bad for me? I crave milk during and after pregnancies. I hope I can make myself slow down. Having high phosphorus is not good. I would run the risk of bone damage and constant itching. Yuck.

I Believe It

Jason came home from school yesterday with an envelope full of gift cards. Most were from restaurants, but some are from Target, WalMart, and gas stations. They were all purchased with staff donations. At first I thought, "I can't believe it!" But the more I think about it, I believe it. I work with an amazing group of people. We take care of each other and that's obvious. They started collecting on Friday and were able to give us more than $400. Amazing! I'd love to be able to thank everyone individually, but most of the donations were made anonymously.

I wrote more...twice, but it keeps disappearing. It's hard to type with one hand, so check back later after I take a break.

Lucky

I work with some amazing, caring people. I'm still getting offers from co-workers who want to be tested. We received a restaurant gift card from someone I don't even know. We were also given some coupons for formula from a student.

With all that has gone wrong for us in the past few months there are times like these when I still feel lucky. I'm lucky that there are so many people who are willing to help. I'm lucky to have family members who will do ANYTHING I need and offer to do so before I even have to ask. I'm lucky to have friends who call just to check in. I'm lucky that I have two beautiful girls who are healthy and make me smile when I'm having a rough day. I'm lucky to have a husband who still sees what's right with me even when all I see is what's wrong.

I really am lucky.

Two Needles

My fistula continues to improve, I guess. We've started using two needles today. That's a big step. The pressure is still high but the nurse practitioner said it's going to be okay. We've just got to use it for a while till it opens up a bit. We'll see what happens.

I went in yesterday to have some blood work done for my transplant work-up. I had to give a urine sample, too. I was only able to produce a drop...literally, a drop. The tech was so confused. I told her that's all I could do and she offered to get me a glass of water. "No, really! That's all I can do. A drink won't help." She said maybe we should do a 24-hour collection. "Uh, that's still all you'll get!" I guess the pre-surgery techs aren't real versed on the nonfunctional kidney.

I have one more test to do before we will meet with the surgeon. Once he decides we're ready to go then they will take my info to "the committee" and get me on the official donor list. It kind of scares me because I'm sort of "on-call" at all times. I could get a call at any moment that a kidney becomes available. Then we'd rush to the hospital and start surgery. I would hope I'd be able to see Alli before I go.

I continue to get offers from co-workers who want to be tested. They are still people I don't know very well. Amazing. There are lots of caring people out there.

Prayers Are Being Answered

My co-worker sent an email to the entire staff about being a donor. I didn't think I'd get responses so quickly! Three people sent me emails within a couple hours of receiving the original message. They want to be tested! A couple of them I don't know well at all. I can't believe it!

Also, a friend of mine from high school has already sent her paperwork in. And, my mom used to work with a lady whose daughter I went to high school with. This wonderful lady also wants to be tested and has been asking the nuns she works with to pray that we will be a match.

I was so down just last week when I heard the my mom and brother won't match. But it looks like my prayers are being answered. I'm getting some blood and urine tests tomorrow so we'll be another step closer. I just need to have my dentist fill out a paper saying that I don't have an infection since I'll be on immunosupressant drugs after the surgery. Then if we find a potential match the two of us will get one more blood test.

One of the nurses suggested that I get on the transplant list soon, before the holidays. Sad to say, but there are lots of drinking and driving fatalities in November and December. Of course, I would never wish that on someone, but...

Thank you, everyone!

Yesterday Was Good

I brought Anna to Children's yesterday to get her eyes checked. The nurse put dilating drops in her eyes and then sent us out to the waiting room to wait for them to take affect. After about 30 minutes we returned to the room for the exam. The exam was heartbreaking. We swaddled her in a blanket and then the doctor used these medal wires to hold her eyelids open while he shined a bright light in them. Anna was a mess. She screamed as loud as I've ever heard her scream. She was as red as a lobster! The exam only lasted a minute, but I hated it! The results were good, though. Anna's retinas are slightly immature. This is kind of to be expected since she's not even supposed to be born yet. We go back to do it again in 3 weeks.

After the appointment, Anna and I went up to school to visit. It was great to see everyone and they were all so supportive. Some even asked how they can get tested to be donors. Since I haven't heard from anyone reading the blog about donating, it was great to hear. I'm going to send the paperwork to my principal since he was one person who asked how to be tested. Another teacher asked if she could send an email to the staff about becoming a donor. I feel a little guilty asking them myself, but I think I would like her to send it out. We'd be happy to find a living donor. Remember, living donors take better than cadaver donors. So I won't be on "a list" until we exhaust other options.

When You're a Mom...

...there are no days off.

Jason's been sick and in bed since Friday. I don't remember what it's like to be sick and get to sleep all day. Even when I was in the hospital I didn't rest much. We had soccer last night and we're running out of food at home. I need to go to the grocery store but can't find the time. I have dialysis today and I'm hoping I feel alright when I'm finished. Then I can get Anna, go to the store and still get Alli from school. Man!

...you're always running around.

Anna had a follow up appointment with the Clinic at the hospital yesterday. She did great! She weighs 6 pounds 3 ounces! It took six weeks for her to double her weight. She's doing so well. She's approaching the 50th percentile for weight.

The doctor and nurses were surprised that her head is so round. They are used to seeing flat spots. But Anna's neck is so strong that she can move her head around and isn't laying on just on side. Good stuff.

They did hear a slight heart murmur. But, I had so many fetal echos and they didn't see any structural problems. So they called it a "flow murmur." It's something that her pediatrician will follow but it's supposed to resolve itself as she approaches our due date. I can't believe she's not even supposed to be here yet!

Most babies will return to the Clinic every two weeks. But Anna's doing so well that they don't want to see her again until she's 6 months. Woohoo!

...you worry all the time.

It seems all I do these days is worry. I worry about the girls. I worry about what their lives will be like if I have to stay on dialysis. If I can't find a donor then I'm stuck on this machine three days a week. It limits the things I can do with them and for them. I worry about my job. How can I keep working if I need time off for treatments and doctors appointments? I'm already out of sick days, so we have no income for a while. There's another worry. It's no wonder my blood pressure is so high.

Bad News. Please Help.

No Such Luck

My mom and brother had a test done on Friday and we got some bad news yesterday. They are both type A and I need an O. So, we're back to the drawing board. We're devastated. Both of them really wanted to be the ones to match. I wanted them to be a match. I need your help.

If you are interested in being tested, please send me an email: stauke2000@yahoo.com. I'll send you the paperwork. If you have questions, email me. I should be thinking of this as a bump in the road, but I feel like my life is just one big bump. I hate this.

Another Bump

I had my arm worked on again yesterday. Another angioplasty. They found a narrow spot up by my shoulder. The report from the doctor says the future of my fistula is in question. They are using it again today and we'll continue to see what happens. If it doesn't work out then it might need to be rerouted. I'm not exactly sure what that means, but I'm sure it means another surgery. Another bump in the road.

And Another

Jason's still sick. He's had a fever since Friday. I've been trying to run it all for several days. I'm worn out...mentally, physically, emotionally. It's just hard.

Not Again

Fistula Problems

They ran me on my fistula for the whole treatment on Thursday. But the whole time my venous pressure was high. You know when a garden hose is kinked and you can feel the water pressure? That's how the doctor explained it to me. There is still a part of my fistula that is narrower than it should be and the pressure is building. So on Monday I will be back at the Access Center getting another angioplasty. It doesn't hurt. It's just a pain because I have to have someone come with me. They won't let me drive myself home. My mom will come, but she'll have to keep Anna with her in the waiting room.

Rough Night

Jason is sick. He's been feeling bad all week, and we thought it was just his allergies. But he had a fever last night. Great. Since we don't need anyone getting sick with him, Alli, Anna and I slept in the family room. Alli thought it was a fun slumber party! She and I slept on the couch while Anna was in her pack and play. I had to get up with Anna every time she woke up for a bottle. Normally Jason and I will alternate feedings. I'm a little tired this morning.

Anna's Ultrasound

I took Anna to Children's to get her hip checked out yesterday. She was great. She stayed really still and took her bottle while they did the ultrasound. And the results were good. The ball of your hip is supposed to be 50% covered by the socket and Anna's is more than 50%. Good stuff!

Busy Week

Monday - Access Center
Tuesday - Dialysis
Wednesday - Early Discharge Clinic
Thursday - Dialysis
Friday - Vision Check at Children's

Blah...

Donation Process

My mom and brother had some blood work done yesterday. It was just to check their blood type. If either (or both) of them are type O then there will be more tests done soon. We should know on Monday. I'm excited and nervous to get the process going. I want things to be "normal" again.

Here We Go

They stuck my fistula again and it seems to be running okay. They are keeping the blood flow low until it matures. I have to start typing with one hand again. It's hard! Expect typing errors.

Anna's Ultrasound

Tomorrow morning I'm bringing Anna to Children's for a hip ultrasound. I can't feed her for 3 hours before the test. She usually goes 3 hours between bottles...we'll see how it goes. I'm hoping she doesn't need an IV. When Alli was younger she had to have a blood test and I had to hold her while they did it. Anna's so small that I think it will be even harder.

Anna has finished one type of formula so I had to switch her yesterday. She seemed to handle it pretty well. This type has fewer calories per ounce, so we might need to increase the amount we give in each bottle. She's still getting tired after some bottles. Even a faster flow bottle tires her out. But she's getting bigger!

Next week we have an appointment at Good Sam. It's an appointment with the pediatrician, therapists, dietitian and other people. They call it an "Early Discharge Clinic." I think they'll be pleased with her progress. The next appointment is back at Children's. We'll test her eyes at this one. Since she was premature and on oxygen there is a chance that her eyes will be bad. We'll see.

What a Mess!

They tried to use my fistula again. Twice today. And it didn't work. My vein is really crooked and they are going at it in the wrong direction. There needs to be a straight part that is long enough for the needle to fit and they are having a hard time finding the right spots. Imagine taking a tooth pick and sticking it into a hot dog. They need to stick it down the length of the hot dog, not across the width.

So, my doctor decided to make it easier on the nurses by tracing my vein with a permanent marker. A LARGE, BLACK permanent marker! My arm is a mess. He not only traced the vein, but he also added some arrows and letters so that the nurses won't be confused on Thursday. Oh, and how about putting some clear plastic over the top of it so that it doesn't wash off. It looks like a tattoo that covers the entire upper part of my left arm. [I've thought about getting a tattoo, but I want to get it in a place where nobody could see it. So then, what's the point?] I look like I should be in the NBA.

We used our brains and decided to take a picture of the markings, too. Then I emailed it to one of the techs and they are going to print it out and keep it in my chart. In the meantime, I'm supposed to use a marker when I can to keep the important parts marked. Fun.

Another Trip...I Hope

My father-in-law turns 60 this year. To celebrate, the family is planning a trip to Gatlinburg over Thanksgiving. It'll be from Wednesday through Sunday, so I'll need to dialyze one day (Saturday). Since the social worker hasn't looked me in the eyes since she f-ed up in June, I hope this won't be a big ordeal. She did come over and give me the paperwork that I need to fill out. She promised, "It won't be a problem this time." Lord, help me.

Not Much To Report

Not much is new since Thursday. No doctors appointments on Thursday afternoon or Friday. Anna continues to do well. She's waking up at night to eat instead of us having to wake her up. I guess that's a good thing...except we never know when she's going to wake up.

Anna met some of her family members on Friday. She met her great-grandpa, great-aunt and great-uncle, and cousins. While all she did was sleep, her older relatives had their eyes well up with tears. They call her a miracle. "She saved your life," they kept saying. A tiny miracle.

You Won't Believe It

Anna's Doctor Visit

We took Anna to the doctor again yesterday. It was her 1 month check up and weight check. We've been having some trouble getting her to eat at times, so we were hoping she has gained weight. To our surprise, she has gained ALOT! She is up 8 ounces since Saturday. That makes her 4 pounds 11.5 ounces. Can you believe it? Those of you who have seen her recently might not think that's possible. She still looks really tiny, but she's gaining weight like a champ.

I asked if we should continue to wake her up every 3 hours to feed her. The doctor said we should keep waking her up during the day, but we could try to go every 4 hours at night. So we did. Anna wasn't really happy about that. This was the first night that SHE woke up every 3 hours wanting to be fed. I will say, though, that she ate really well.

Since Anna's "adjusted age" is still -1 month, the doctor said she doesn't HAVE to do anything now except breath and suck. She doesn't have to look at us when we talk. She doesn't have to move her head around. She doesn't have to control her arm and leg movements. There are no milestones that we need to be looking for. Nice to know, but I think she's doing alright.

When Anna was in the NICU, there was a slight concern about her hip. There was a "click" that they heard when they moved it. This could mean that she has hip displasia. That means that the hip socket is abnormally formed. Since she is a female, born by c-section, and presented breech, there is apparently a higher risk. Add to that the fact that my brother, my cousin and I all had hip displasia, and there is reason for us to follow up. The doctor didn't notice a problem during the physical exam, but he said that I should be insisting on a follow up ultrasound. So, that's the next step. For all three of us the displasia resolved itself. I expect that there won't be an issue, but I'm going to set up the ultrasound at Children's, anyway.

My Doctor Visit

I had my fistula checked out yesterday. The doctor did an ultrasound of my arm and was happy with what he saw. He said we could start sticking it today! The doctors told me that once we start using my arm instead of my catheter that my treatment will be more effective. So, if things go as planned I will get my catheter out in about 3 weeks.

If all goes as planned...

So they tried to stick me this morning and it didn't go well. The tech numbed the site and then stuck it. She went through the other side of the vein. Dang it! So it can't be used today. And I've never seen blood rush out of an arm as fast as it did. I'm supposed to get a really nice bruise on my arm. If you've seen me recently you'll know that this isn't really a big deal...I've had some HUGE ones lately. I'll be happy when it starts getting cooler and I'm not wearing sleeveless shirts.

A Proud Mom

Alli has been talking about taking "tests" at school. The students are pulled out of the room individually to answer questions. I figured they were trying to "level" or "group" the students. I guess I was right, because Alli came home with a letter inviting her to be part of St. Dominic's Enrichment Program. She will be pulled out once a week (with 4 other students) to work on reading, math, and other subjects. If you went to an Oak Hills elementary school, I guess we would compare this to the G.A.T.E (Gifted And Talented Education) program. I have to say that I was hoping the school offered this program and I expected Alli would be invited to attend.

I couldn't be prouder of MY GIRLS.

So Far So Good

We've had Anna at home for four nights now. Things are going really well. I think the hardest part of having a newborn is getting her on a regular schedule. We're lucky that the NICU nurses have Anna on a strict schedule. She eats every three hours and sleeps most other times. She still isn't crying much. She'll let us know if she needs something, but she's a really calm baby. A co-worker of mine said that her twins were small at birth and they didn't start crying for a couple of weeks after they were home. Something to look forward to, I suppose.

Tomorrow I get to have my fistula checked out, again. I guess they'll probably do an ultrasound to check the diameter of the vein going up my arm. If it looks good then hopefully they'll be able to use it soon. I'd love to get this catheter taking out of my shoulder.

The doctor also called yesterday to talk about my liver. I don't know if I mentioned it before, but I had an ultrasound of my abdomen as a prep for transplant. They found a slight laceration on my liver and I need to get that checked out. He said he's going to talk to another doctor to see how we should proceed. We will either do another ultrasound to see if it has healed itself or we'll do an MRI. I asked what could have caused it and he said "it just happens." Seriously, that's his explanation. It's just something that happens. I'm sure it might turn into something that will need to be treated, but for right now the doctor is clearly not too concerned. Until he's concerned, I will try not to worry.

We also discussed my weight and the time I'm running on dialysis. I'm eating VERY well right now and I'm gaining mass, so he's going to raise my weight a bit. I had been cramping and my blood pressure has been dropping and these are both signs of dehydration. That means they are trying to take off too much fluid. I asked him about the 4.5 hours I'm running since I only weight a buck-twenty-five. He said that "it's worth the investment." There is some number that is supposed to be 60% and mine isn't, so he thinks that it's a good idea. I just can't believe that the 300 pound men run for 3.5 hours and little tiny me has to go for 4.5 hours.

People keep asking when I can be treated at a center closer to home instead of at the hospital. I think that they still don't consider my condition to be "stable." And until I'm "stable" I'll remain here. I think that once we figure out my weight and time then I'll get to run in Delhi. That will ultimately save me a lot of time and I'm excited for that. Although, I'm starting to think that I'll really miss the nurses and techs here. Not the drive, though.

Best Day Ever!

Alli watches a show called "Fineas and Ferb" and it has a great theme song. The chorus says, "This could possibly be the best day ever." I couldn't help but sing that song all day yesterday. It was one of the best days ever!

We got to bring Anna home! We went to the hospital around 1 pm and watched as they did her hearing test. She passed and we were set to go. They sent us with two cases of ready-to-use formula (Special Care) and it should last us a little over 12 days. Then we'll start her on a powdered formula that we can buy at any grocery store.

Within an hour of getting Anna home Alli had gathered the entire neighborhood to come see her on the porch. The little girls across the street were great. I let them touch Anna's feet since they were covered. One of the mom's took pictures of all of the neighborhood kids with Anna. I remember all of the pictures my mom took of the kids in our old neighborhood. I think my girls will get a kick out of them as they get older. They boys were talking about hanging on the the pictures just in case Anna becomes famous one day. She was the smartest baby in the NICU, so there is a chance that she'll be President one day.

Anna did great on her feedings yesterday. I was worried that the change of environment and new bottles would throw her off, but she was a champ. She woke up every three hours for her feedings. In between she just cooed, gurgled, and squawked. It made me laugh.

When we brought Alli home we kept her in our room for about 4 months. She slept in her pack and play. But since Anna's room is right next door to ours, we decided to try her in her bed from the beginning. We still needed the monitor because even Anna's loudest cries aren't loud enough to wake us.

I'm in dialysis right now, so Jason will have to bring Anna to her first pediatrician appointment this morning. He's nervous, but I think he just doesn't want to fill out paperwork. Dads.

"This could possibly be the best day ever. And the forcast says that tomorrow will likely be a million and six times better!" I can't wait!

The Sun'll Come Out...

Tomorrow!

I can't believe it, but one of the doctors told us we could bring Anna home on Friday. Friday! That's tomorrow! Here's how it all went down.

We were on our way to visit Anna on Tuesday evening when the phone rang. It was the mean nurse and I was nervous. It's usually the doctors that call and they usually call in the morning. The mean nurse said, "I wanted to let you know that we're moving Anna to the 13th floor." What? What for? What's wrong? What's going on? She continued, "It's just a satellite NICU where we move some babies when they are getting ready to go home." Go home? What? Really?

So, we went up to the 13th floor instead of the 9th. Things are similar there, but there are only 4 beds instead of the 50ish that are on the 9th floor. But Anna looked great. She was still hooked up to all of her monitors. We had a nice visit and we were hopeful that she really would be discharged soon.

Aunt Katie and I returned on Wednesday morning and I got to feed Anna at 9 am. She was a champ and took the entire bottle in 5 minutes. They removed Anna's feeding tube and oxygen. And when one of the doctors came by she was bragging on Anna, telling us she's doing amazingly well. Then came the magic words. "If all goes as planned then we'll discharge her on Friday." Friday! That's tomorrow!!

Alli is super excited. She's told everyone in the neighborhood that her sister is coming home on Friday. She's already planned on bringing Anna out on the porch for all of her friends to see her. I'm already planning to make sure the neighborhood kids don't touch her. They are a messy bunch!

Now it's all about getting the house together. I got the pack n play out yesterday. We finished her room this weekend. All of her clothes are washed and ready to go. We're ready. We're so ready!

Closer and Closer

I'm on dialysis right now and I did okay with my weight gain this weekend. I gained about 3 kilos, one a day. That's what we're shooting for. I'm hoping the doctor comes around today because he's got me on for four and a half hours and I'm hoping he'll bring me back down to four. Three and a half would be ideal, but a stretch I think.

I go for a follow-up chest x-ray today, too. Since they drained the fluid from my lung I've been breathing really well. That means I've been sleeping well, too. As much as has gone wrong lately, I feel lucky that I have recovered from the c-section before the baby comes home. I think it will make the long nights a little easier to handle.

Speaking of...

Anna continues to make amazing progress. They started bottle feeding her this weekend. During our last update, the doctors said she was taking 50% of her feeding through bottles. The rest they give her through her feeding tube. I even got to feed her yesterday! She only took half of her bottle, but she had already taken her midnight, 3 am, 6am and 9 am feedings through bottles. She was a bit tuckered out when I tried to feed her at noon.

Her oxygen is down to 0.2. Instead of dropping it to 0.1 they are just going to try her off of the oxygen today. The doctors say that at 0.1 the nasal cannula is more in the way than helpful.

So there are two things that we've got to get settled before she can come home: feeding and breathing. I asked the doctor for a time frame. Of course, they don't really like to give them. But, he said realistically we could be bringing her home early next week! If she can go an entire day off oxygen and meets her feeding goals then we get to bring her home. It's hard to believe that it will be only 4 weeks. Of course, if she has any issues (like she stops breathing or her heart stops) that require intervention, then she buys herself another 5 days for observation. These have never been problems before, so I'm not too worried. And, her room was painted this weekend. Her name is on the wall, her curtains are up and we're all ready!

Alli

I'm starting to wonder how Alli's going to handle things when the baby is home. She's been pretty crabby lately. I'm sure it has something to do with school. She's beat at the end of the school day. But we're still dragging her to the hospital alot and as long as she's holding the baby she is fine. But Jason and I like to hold her too, so there's always a stretch of time when she's bored. The hospital offers babysitting in the waiting room on Tuesday and Thursday nights, and she'd rather be out there than in the NICU. There are days when we'll work it out so she doesn't have to come with us. I've been trying really hard to focus on Alli when we're at home. I'll talk to her about school, her friends, etc. and ask few questions like, "Are you excited about Anna coming home?" Or, "What are you going to teach Anna when she comes home?"

Alli is excited to show her off whens he comes home. She is already planning on bringing the baby out to the porch for all of her friends to see her. I'm sure Alli will be fine for a while, but once the novelty fades, I'm not so sure.

Finally, Happy Tears

No meltdowns since earlier this week. I don't think that means I'm "feeling better," but I'm not feeling worse. Treatments have been rough now that I'm only coming three days a week. I tried really hard not to gain alot of weight since Thursday and I did alright. I think that I'm actually gaining real weight, though, now that I'm eating better. Most of you will be happy to hear that. I was looking a little scant there for a while. So we'll still have to work on my dry weight as I get heavier.

Surprise!

I went to visit Anna on Thursday and the nurse asked if I knew where her new location was. I guess they moved her on Wednesday, the day we didn't get to visit. So they told me where to look for her and when I turned the corner my eyes welled up with tears. She's in a crib, not an incubator! A real bed for my big girl. I broke down in tears...happy tears! We're getting closer. Uncle Briney got to hold Anna Banana for the first time. I think he needed that.

More good stuff when I came up yesterday. Anna gained 2 ounces and now weighs 3 pounds 10 ounces. Also, the mean nurse had removed her oxygen to see how she'd do without it. And for the two hours that I was there she did great! It was very encouraging. And when the doctors did rounds they decided to try Anna on a bottle feed. They'll start slow with only one bottle feed a day. They don't want her to get too tired and then give up.

I called later in the afternoon to check on her breathing and the mean nurse said she had to put her back on the oxygen, but that's normal. The flow of the oxygen is less than before, so that's still a step in the right direction. And she did get a bottle feed at lunchtime. It apparently took about 3 minutes for Anna to figure out what was going on. She didn't understand what she was supposed to do. But after a while she caught on and finished all but 5 mL of her bottle. They gave the rest of it through her feeding tube. Making progress!

And the best news of all: The nurse told us to start getting her room together this weekend. She said she can see Anna coming home within 2 weeks! She's ahead of schedule...hooray!! I just hope she doesn't have to come home on equipment. I'd be too worried to sleep, ever!

Rough Day

Tuesday

You may have read that I gained alot of weight over my "weekend." That lead to a terrible day on Tuesday. My blood pressure kept dropping. At one time it was 80/50. If you've never experienced that before you should feel lucky. I got light-headed, cold and sweaty, and just felt like I was dying. They slowed things down for a while but tried to speed them up again. It just wasn't working. My pressure kept dropping and they finally decided that we wouldn't get it all off. I left a little heavy, but at least I felt a bit better.

I spent some time with Anna after that and then picked Alli up at school. When I came home I had a complete meltdown. I was feeling very sorry for myself. I haven't cried since Anna was born. I think I finally let myself be sad about our situation. I have spent so much time convincing myself that Anna is fine. But this isn't normal, and Anna isn't normal at this point, and our lives are not normal. Tuesday was the first time I asked the question, "Why me?" What did I do to deserve this? What did Jason do to deserve me? Why will Alli and Anna have to grow up with a "sick" mom? It's not fair. Jason is trying to convince me to just plow through it and just deal with what we've been dealt. That's getting harder and harder.

I didn't get to see Anna yesterday, and neither did Jason. She had no visitors and that makes me sad. Jason had Open House and I had my fistula worked on. The doctor did an angioplasty on my arm and it should be ready to use in a couple of weeks. The procedure itself wasn't too bad. It's a little achy right now but I was surprised that I was able to sleep without too much trouble. They just used a needle and small catheter, so no incision. Just a small band-aid.

Wednesday

The doctors didn't call with an update on Anna yesterday, but our goal is still to get her into a regular crib by the end of the week. Feeding with a bottle is next. She had to have her feeding tube changed earlier this week because each feeding was taking too long. They gave her a bigger tube so the formula would move faster. Hopefully that means she's going to gain weight faster, too.

Three Pounds Seven Ounces

Anna Grace

Anna was gaining weight slowly at first. In fact, every time she pooped she's lose weight. But now she's on formula instead of breast milk and they are fortifying it by adding more calories. Last night she weighed 3 pounds 7 ounces. It's been two weeks, but things seem to be moving pretty quick!

When we spoke to the doctor this weekend she said that within a few days they could move Anna out of her incubator into a normal crib. This is, of course, only if she can control her temperature. She's been doing great at that. One of the nurses, the mean one, said that it's a given when she's 3 pounds 12 ounces.

We've started to dress Anna in her own clothes. They are huge! But some of you are sending us preemie outfits and they look to be the right size. I have a hard time dressing her myself because of the four cords and wires. I think the more snaps the outfit has the better!

Allison Nicole

We didn't bring Alli up to the hospital yesterday. She said she would miss Anna, but wanted to stay home and play. She really needs some "normal" time playing with her friends. Since she and her friends are all back in school things have changed alot for her. But, she's loving school and seems so grown up. She pushed me out the door when I dropped her off this morning. I love that she loves school. I hope that keeps up!

Jason

As if our life isn't confusing enough...Jason started student teaching last week. He seems to love it! There was a question about whether he'd be able to do it or not. Since he's doing that full-time he had to quit his job at the bank. Thank goodness I'm still getting paid while on maternity leave! We are doing a pretty good job about watching our spending. We're eating at home alot more. While we'll spend more on gas than before with all of the hospital driving, we can have a "family night" but visiting with Anna and having ice cream at home.

Jason made a comment last week that Saturday is now his day to sleep in. I told him that it might soon be the day that he needs to set up a lemonade stand in the front yard to earn us some extra income. He's got to be able to perform some sort of service on the weekends, right? Alli decided that she could just do some ballet dances in the circle and charge people one quarter, one dime and one nickel to watch. Dancing for money...just what a mother wants for her child.

Kelly

After being readmitted last weekend, I haven't had a fever or any problem. I'm feeling pretty good, just tired. But I can tell that it's just because I'm running around, not because I'm sick. My incision doesn't hurt that bad. It's a little achy and nagging but it doesn't keep me from doing anything.

I'm on dialysis right now. It's the first time I've gone two days at home without being dialyzed. And I can tell! I woke up this morning and my face was swollen. And then I weighed myself. I gained 5.5 kilos (that's 12.1 pounds). Yikes! So they are taking alot off today. The only worry with that is that my blood pressure will drop while I'm on. No big deal because I'm not taking my blood pressure meds on the mornings of dialysis.

Tomorrow I will have an angioplasty on my fistula. This is to make sure that the vein is the same diameter all of the way through. That gets us one step closer to using the fistula and getting rid of the catheter. Thank goodness!

Transplant has taken a back seat lately, but it's still in our site. I feel like it's not my top priority right now. Mom and Brother are on the ball and have sent in the paperwork. We'll be getting blood work done sometime soon.

Eleven Days Later

Anna was 11 days old yesterday. She is only one ounce above her birth weight, but they tell me that being over her birth weight at all under 2 weeks is good! She is getting off of the donor breast milk and onto 100% formula. This is a good thing, too. The formula is much thicker and will keep her satisfied longer. Each time they feed her they check to see if there is any milk remaining in her stomach. Fortunately she's digesting it all. And if she's anything like her big sister she'd eat all day long!

Alli and I decorated Anna's bulletin board last night. I have a picture and I'll post it soon. Alli thought that was fun.

Yesterday was a little more relaxing than other days. I got Alli up and dropped her off at school. I came home for a 2 hour nap, got ready and saw Anna at the hospital. I was able to go to the craft store, visit my grandpa at lunch, and stop at Kroger before picking Alli up at school again. We went back up to the hospital again and then had dinner at Dewey's. I don't remember the last time the three of us had dinner together...it was nice!

I'm meeting a friend or two at the NICU after dialysis today and that's the only plan I've got. Jason and Alli are in Dayton at a baby shower and I will get some more time to relax. Ahh!

Home...Again...For Now

They let me leave! Hooray! Under one condition. I had to make sure that the nephrologist and the lung doctor talk today about my procedure. As far as I can tell, the results weren't very conclusive. My white blood count was high which is normal when you've been on steroids. It also could mean an infection or inflammation. I'm leaning toward it being inflammation since women tend to have autoimmune flares after pregnancy. I don't think the doctors know enough about Sjogren's Syndrome to know what a flare is like.

When I left the day didn't get easier. We saw Anna for about a half hour, ran to Big Boy for dinner, got Alli home to change into soccer clothes and then headed to practice. We dropped off a prescription and then decided to get some "back to school" milkshakes which took an eternity. After picking up the meds we headed home to pack lunches, make sure all of Alli's school supplies were ready to go and get her in the shower. After finally settling her down and getting her uniform ready for today we headed to bed. I don't feel like I settled down much until Alli was at school and I was back home. She was so excited to start Kindergarten.

I saw Anna for about a half hour today. She's looking good...and they got her dressed for the first time! Her outfit is GIANT, but she looks so cute. I'm in dialysis now and will remain on today for 4 1/2 hours. The nephrologist is going to make an appointment for me to have my fistula fixed up and we'll start using that some time next week.

Now, it's time to rest. I have bills to pay and calls to make and then my eyes will be closed until 5:00.

Test? Right!

They called it a test...I'd call it a procedure. They stuck a small catheter in my back and in the fluid around my lungs and drained as much as they could. I thought they would only take a small amount and send it to the lab to get tested. But they drained a BUNCH of fluid. It was around 700 mLs. For those of us not into the metric system, 1 oz = 30 mL. 700 mLs is just about 24 ounces. That's two cans of soda! And I'll do the math for you...that's about 1.54 pounds of fluid! I couldn't believe it.

So the bottle of slightly yellow fluid goes to the lab and I wait to see when I can go home. The nurse said she had "lots of things to do" but would check into it as soon as possible. Don't make me get mean!

I've been posting alot about my feelings lately and lots of you have commented on being worried about me. I really do feel like I'm emotionally feeling much better. I'm bonding with Anna more than I first thought I'd be able to. I've never been much on talking on the phone, so if I don't call you back please don't be offended. I've been trying to sleep as much as I can while I'm here at the hospital and I'm sure I will see everyone very soon.

I can't wait to see Alli at home today!

Some More On Today

I met with the lung doctor. Ha, it's the same one that I had in October, which is good news. They have decided to stick a needle in between my ribs and suck out some of the fluid to get it tested. There are, like, four tests that they'll do. Two will give us quick results, within a few hours. The other two will take 2 or 3 days. He said that if the quick ones come back okay then he will have no problem sending me home to wait for the others. I sure hope so. My big hope, now, is to be able to get Alli to school for her first day on Thursday. I wasn't too emotional about it until I thought about taking her picture in her uniform with her backpack.

I finally had the guts to complain about my food. They haven't let me order what I want, which is annoying. But then they will leave something off of my tray (like steamed vegetables) and not replace it with anything else. I know that my dietary needs have changed, but if something is removed for a good reason it should be replaced by SOMETHING! I asked for a big salad with each meal and haven't gotten it yet. Blah. Now that I'm finally hungry I'm not getting enough calories!

Peanut is doing well. My dad held her for the first time. He was scared and looked like he was going to cry. So cute. I "kangaroo-ed" her again today. I think that's going to be her new nick name. I call Alli "Bubba" and now I'll call Anna "Roo."

I know...Sorry

I know, it's been a long time since I posted. Bit of a bump in the road for me.

I had a fever on Saturday night and normally wouldn't think twice about it...just take some Tylenol and see what happens. But just having the surgery on Monday sort of scared me so I called the OB. She wanted me to go to the ER and they found my white blood count and lactic acid levels were high. This indicates an infection. And I was admitted.

The fever at 10:00 on Saturday night was the end of the fevers. And my blood work has come back normal now. I spent one whole day in my room (no NICU visits because of the fever). But after taking a 36 hour break, I was able to go back down yesterday. We're waiting on a blood culture and urine test result (imagine trying to get a urine sample when you don't pee...not pleasant). Hopefully we'll get those results today and I can leave.

I feel good! No pain from the surgery and I haven't had any pain medicine in about 24 hours. Today's nurse offered it to me but I don't think I need it.

Anna Banana

They had to put an IV in her umbilical cord earlier in the week and they found out Sunday night that it wasn't placed right. There was some back-up and leaking so they took it out. No big deal. They placed another IV in her arm and it's doing fine. I got to "kangaroo" with her yesterday. I wore a gown and she wore a diaper and we got all wrapped up skin-to-skin. It was about an hour and a half and it was AMAZING! She was so calm and restful in my arms. I was so calm and restful with her in my arms. I think it was good for both of us.

My mom came in yesterday afternoon and got to hold her for the first time. She agrees that you don't realize how small she is until she's in your arms. Then Jason came up and got to hold her for a while before taking Alli home for dinner.

My phone rang last night around 9:30. "Is this Anna Grace's mom?" said the voice on the other line. "Yes...," I replied anxiously. I'm not used to getting calls at night and in fact they told us that they don't call unless there is bad news. I started to sweat and I'm sure my blood pressure and pulse went through the roof! But, it was her nurse that came on at 7:00 and she just wanted to call and let me know how she was doing.

And she was doing great! When the nurse moved her after her feeding she knocked the oxygen out of one of her nostrils and Anna did fine. So the nurse said she was going to try to get her off of the oxygen completely after midnight. Yay! She had to move the feeding tube from her mouth to her nose...no big deal. She's pooping and peeing which will help with the jaundice. The nurse had nothing but positive things to say and I think it really helped me sleep (as much as you can sleep in a hospital).

Back to Me

Doctors are down here talking to me right now. Even though I have had no fever in a while they are still concerned about the fluid around my lung. They can't tell if it's infected or not without sticking it with a needle and checking the fluid. The nephrologist is calling the lung doctor to see what he wants to do. But if they want to stick me I probably won't go home today.

And, finally, my phosphorus and potassium are high. This hasn't been a problem since I was first seen about the kidney problem. I would imagine that it's probably because I had two days off of dialysis (which is a blessing) and because I have been eating. Before I was eating so little that I wasn't worried about WHAT I was eating. Back on another medicine and on each treatment for 4 1/2 hours until we get all of the toxins out.

Still Movnig Uphill

I think I need to change the name of my blog. I haven't been blogging on dialysis lately...just Anna.

Anna is off the bili lights! Her jaundice numbers are really low so there is no need for them. She was also breathing "room air" (21% oxygen) yesterday. No more mask. They removed the CPAP and now she is just getting a little bit of oxygen through her nose.

With all of these tubes and wires removed it made it much easier to hold her yesterday! I can't believe it! I held her for about an hour and it was amazing. She fussed a little bit and I made a comment about this being the first time that I heard her cry (since she didn't cry in the operating room). The nurses said, "Really? Cause it seems like all she does is cry!" Something to look forward to when we get to bring her home, huh?

Jason changed her diaper and then we went home for dinner. When we returned, Jason got to hold her for about an hour, too. It's the most special thing ever! After about an hour, Alli sat on Jason's lap and also held her. We also finally have a picture of the whole family. I can't stand how excited I am!

When Anna starts crying, Alli has decided that we should sing her a song. So the three of us sing "Twinkle, Twinkle." Both times it has calmed her down. So special.

The doctor and nurse suggested that by Monday she could be completely off of oxygen and be getting full feeds. That means that she'll be getting all of her nutrition through breast milk and none through an IV. She'll still be getting her feeds through a feeding tube. At about 33 or 34 weeks (soon) they will try to bottle feed. She should be able to suck, breath, and swallow all at the same time. The big issues is that she's so small that she might run out of energy before she finishes the bottle.

I can't wait till she starts putting on some weight!