"We cannot change the cards we are dealt, just how we play the hand." ~Randy Pausch

Tuesday, August 31, 2010

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!


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.


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.

Saturday, August 28, 2010

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!

Thursday, August 26, 2010

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.

Wednesday, August 25, 2010

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!

Tuesday, August 24, 2010

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.

Saturday, August 21, 2010

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!

Friday, August 20, 2010

Another Good Day

I had dialysis on Thursday morning and then I got to come home! I wasn't sure how I'd feel about being away from the hospital, but it really is nice to be in my own bed at night. I slept pretty well.

Anna had a pretty good day, too! They took her off of her breathing tube again. Her feedings are going so well that they increased the amount of milk she's getting from 3 mL to 7.5 mL every 3 hours. Keep in mind that 30 mL = 1 oz, so she's not getting that much. But she's digesting every bit of it!

She was still on the Bili lights yesterday. Her blood level was a 6 and the cut off was a 6, so they kept her on for one more day. Today she is officially 32 weeks and the cut off is 8. As long as her level is below 8 they she'll come off the lights and we'll be able to hold her today! I can't wait!

Last night I got to change her diaper! Not many moms would be as excited as I was to do that. And when the respiratory specialist came around to fix all of her tubes and such he let us get a good view of Anna without her masks. She still has lines and creases on her face, but it felt so good to see her without all of that mess.

We spent a couple of hours with her last night and I'm starting to feel a little more attached. Last night was the first night I woke up asking myself what she was doing. What a good feeling. I can feel a turn-around, and I'm so grateful!

Thursday, August 19, 2010

I've Lost Track of the Days

Anna's Rough Afternoon

Just like me, her veins are hard to work with and she's a tough stick. The IVs they are giving her have to be removed every 12 hours which is unusual. They had to try to put one in her temple yesterday and that didn't work. They also tried a pic-line which didn't go well either. Finally they had to do a procedure to put a line in her umbilical cord. It took about an hour but they got it.

The stress of the day caused her to have more trouble breathing. So, they put the chest tube in her again just to lessen the stress she's been under.

Good news...she was fed yesterday. They put in a feeding tube and then gave her a small amount of donor breast milk. Once they start they feed every 3 hours. The nurse also said that they will change her diaper every 4 hours and if we are around we can do the diaper change. My pain meds put me to sleep last night so I missed the changes and feedings. I am grateful to be getting some sleep but sad that I'm not getting down to the NICU as much as I should.

Bonding...The Lack Of

I'm starting to understand what's going on. It was SO EASY to bond with Alli right after she was born. I held her immediately and fed her right away. I think this is what is the most difficult part. I can't hold her so I'm not really bonding with her. It's almost like she's not my child. I love her, but I don't quite feel like she's "mine" yet. I feel like a bad mom, but I have heard that some mothers and children just take longer to bond, even if their circumstances aren't as extreme as ours.

Going Home?

The nephrologist and cardiologist say I can go home with the OBs say it's okay. I spoke to an OB resident this morning and she said I can go home today if I feel like I'm ready. I'm not sure if I am. She said I can shower at any time, they will take my staples out today, but I can't drive for several weeks. That's my worry. I want to be able to get up here to the hospital by myself (for dialysis and to visit with Anna). I'll have to sit down and think about my schedule.

More to come...we'll get an Anna update from the doctors and I'll post again.

Wednesday, August 18, 2010

The Latest

Anna Grace

On Monday Anna was taking 80 breaths per minute (out of 100) on her own, so they took her off of the breathing tube to see how she could do. Most of the day on Tuesday she was fine, but by evening she was needing more assistance. She was taking 55 breaths on her own, so they decided to put her back on the breathing tube Tuesday night. They said it was not an emergency situation, but it's easier to put the tube in before it becomes an emergency. They held off of giving her a dose of medication that would help even more. It might be in the near future.

Another lab showed that she is slightly jaundice. Around 8:00 last night they put her under "the lights." They will be checking her blood again this morning to see if she'll need to remain. She looked really funny with the lights on and her little purple mask covering her eyes.

Jason is coming up this morning without Alli so that the two of us can be around when the doctors do their rounds. He was there for rounds yesterday and said that I would probably like to be there. He said it's a bit overwhelming because there are several doctors and nurses all around her little incubator. But they discuss my situation and hers and talk about everything that happened over night. We're going to get a notebook to keep by her bed to write down questions and answers that we have.

My Echo

My blood pressure and pulse were amazing on Monday night after delivery (112/72 and 88 bpm). They were even so good during dialysis yesterday that they didn't give me my blood pressure meds. My nephrologist said that the second after I delivered my heart felt less stress and he expected to see in my echo that it would go back to normal.

I had my repeat echo on Tuesday afternoon. When they decided to move me to the Cardiology floor instead of the postpartum floor I began to worry. But then the cardiologist came up to see me and she said the echo looked really good. Much, much, better she said. And the medicine they are giving me doesn't just treat the symptoms but also can help reverse any problems I'm having. She expects that my heart will be going back to normal. Not many doctors have called me "normal" in a long time. I'm so relieved!

Hormones and Emotions

I haven't had much sleep after delivery and it started to catch up with me last night. It's so strange to just sit down there with Anna and not hold her. So when I'm down there I feel like I'm not sure what to do. All I want to do is cry, which I guess is typical with all of these hormones. I had visitors last night and I'm sure I was terrible to them. Please know that I'm feeling stress and I'm not handling it well. Everyone here is being great, though, don't get me wrong. I think that once I can hold her more and we are told that her breathing is better then I'll start feeling better...

Tuesday, August 17, 2010

She's Here!

After dialysis I went back to my room to get myself psyched up for surgery. They knew we'd need to take the epidural slowly as it sometimes drops the patent's blood pressure. They counteract this by giving copious amounts of fluid. Therein lies the problem.

So, slow and steady...I got my epidural around 2:30 and then there was an emergency 24-week baby that needed to be taken before us. We waited for about an hour in the ER. The anesthesiologist is one of my former students parents. He was great!

The surgery itself went great. As they say, I felt pressure but no pain. Jason was able to stand up and watch without getting sick or passing out. I was so impressed.

Anna Grace Shattuck was born on 8/16/2010 at 3:38 pm. She weighed exactly 3 pounds and was 16 inches long. When she came out I could not hear her cry. They assured me that she was crying a little but she needed some assistance breathing. So they put in a breathing tube right there in the OR.

Jason left with her and I remained in the OR for a while. We asked for the doctor to tie my tubes. It actually became an issue since Good Sam is a Catholic hospital, they don't schedule tubals. We had to prove that it was medically necessary...and all of the doctors agreed that I do not need to be having any more babies! The Ethics Committee came back and told us we had the go, although the surgeon took one more shot at convincing us not to do it. "You can't turn back. You know your kidneys might come back after all of this and you might change your mind." We're not changing our mind. No more babies. I stayed in the OR for a while longer while the OB completed this part of the surgery and then stapled me up.

I was overwhelmed by the number of people that were in the waiting room. I asked for Alli to come back first and she immediately started crying when she saw me. She's so emotional. But Jason said she was great when she went back to see Anna. Next my parents came to see me and then went to see Anna. Bill and Deb came next and the four grandparents went next to see Anna. Brain, Steven, Leah and Katie were my last visitors and the nlast to see Anna. I was glad they came down, but glad they left when they did.

After all of the commotion and an attempt to get some sleep, the nurse brought me to see Anna...and they let me hold her. I felt so happy, very nervous and cautious. But over night they decided that she doesn't need as much help breathing. Her breathing tube is out and she just gets some oxygen every once in a while when she needs it. I can't wait till dialysis is over and I can go see her again!

My blood pressure and pulse were amzign over night! I can even tell a difference. Having such a high heart rate made it feel like I was running a marathon. I feel alot more relaxed now. I'm wondering what this means for us. Does it mean that now that the pregnancy is over that my heart will go back to normal? I'll have another echo this week to check that out. Could you imagine if things went back to normal?

I'll continue to post and as soon as we get the camera charged again you'll get some photos. Continued prayers, please. Love!

Monday, August 16, 2010

The Big Day

I can't believe I slept at all last night. They checked my blood sugar every two hours since I couldn't eat after midnight. But in between checks I really did sleep.

I'm in dialysis right now. They are taking off a TON of weight, leaving me at 61.5 kilos. I'm getting out of here at 135 pounds and that's before the baby is born! They want to leave room to play with my fluid levels. Apparently there will be a large shift in fluid once I get the epidural. My nephrologist talked directly to the anesthesiologist so everyone's on the same page.

The nurses are getting excited. The one OB nurse that I like so much came down to see me and is going to rearrange her day care schedule so she can stay till the baby is born. She's sweet. The dialysis nurses want me to call as soon as she's born.

I think Alli is excited, but I'm worried about her. She's already tired of having dinner at my parents house. I hope we can make her life as normal as possible so that she doesn't resent the baby. But she's excited to help decorate the baby's bulletin board.

When Alli was born there was nobody waiting in the waiting room. I guess it was because it was unplanned. But today there will be lots of people waiting. My parents and brother, Jason's parents and brother and sister and in-laws. I have a stupid worry about who gets to go back to see her first. Jason says not to worry about it, but I really don't need in-laws or parents getting their feelings hurt.

Now it's just waiting until 1:30 this afternoon. I'm more nervous than excited, but I am excited. I can't wait to see her little face and little fingers. I wonder who she'll look like. Will she be as cute as Alli? Will she have my eyes? Will she have Jason's nose?

If I can figure out how to do it, I will post pictures here on the blog. If not, I'll send some through an email and please feel free to pass them along. I'll continue to blog after the baby is born so you can keep up with me and her.

Thank you for all of your well-wishes and prayers. The support we've had over this journey has been overwhelming and greatly appreciated. Lots of love.

Sunday, August 15, 2010

Day Before C-Section


Saturday wasn't a very stressful day. It was nice to relax a bit. I finished dialysis and had lunch waiting for me. My appetite has been better since I've been here.

A NICU nurse came in to talk to us and relieved alot of our fears. We now know that they will let us see her after she's born, maybe even hold her before they take her to the NICU. Jason can go with her right away, but if he decides to stay with me then we can send one of my parents back with her. They expect to have to help her to breath (not sure to what extent) and to help her with a feeding tube. The breathing, sucking, swallowing reflex doesn't work well until about 32 weeks. She'll need help keeping warm, too. Chances are that's it.

Jason, Alli, my mom and I got a tour of the NICU, too. I was expecting a sterile, bright room with white walls and floors. Instead, it's a cozy, warm area with dark carpet and dim lights. There are tons of nurses there at all times, too. Each baby has its own little cubical (like an office). We get a "parent's drawer" where we can keep some clothes and blankets for her. She even gets a bulletin board that we can decorate!

They were great with Alli. I'm glad she got to come back with us. The nurse gave her some diapers, a pacifier, and a bottle. Jason said she was taking care of one of her dolls all last night. We also found out that Jason and I as well as our parents are allowed to visit her 24 hours a day. Alli can come back with us at any time and we can bring even non-relatives back with us whenever we want.

They encourage "kangaroo care" which is just skin to skin contact, so we'll be able to hold her for sure. Since I will be on some medication after delivery, I will not be able to nurse her. But the hospital offers a milk donor program. It kind of freaked me out a little in the beginning...someone elses milk seems a little weird. But they told us that the breast milk is better than even the preemie formula. Even if it's for a few weeks, I think we're going to do it. Plus, the hospital believes in it so much that they pay for it. Amazing.


The cardiologist finally came in around 7:00 last night. She changed my blood pressure medicine and it's working well. My pulse was even down to 88 while I was sleeping. She came back to see me this morning and seemed well with how it's working.


The anesthesiologist came in today to talk to me about tomorrow's surgery. He said they might have to put me under instead of giving me an epidural. That did not make me happy. But, it turns out that he thought I was getting blood thinners during dialysis which complicates the epidural process. Since I'm not getting blood thinners, he said he'd check my chart again and we should be able to do an epidural instead. I want to be awake...I need to be awake.


Not much on my schedule. Jason and Alli will be coming up after church and I get to take a shower. Hooray! Other than that, I just get to rest up for tomorrow. I'm sure I'll be bored, but I'll have my computer and some magazines. I'm glad to be getting the chance to rest and relax. It's amazing how much better I'm feeling.

Saturday, August 14, 2010

Dialysis Day 67

The Latest

I had a good night sleep. They woke me up every couple of hours to check my blood pressure. They changed my dose of blood pressure medicine yesterday and it's working well. My pressure is good until the meds wear off. My pulse is still high. The cardiologist who specializes in pregnant women is coming in today. She's going to be me on some IV meds to lower my heart rate.

That's the big story right now. My body is starting to give up on this pregnancy. My heart has been working over-time for quite a while and can't keep up. They explained that it has to beat faster because it can't beat hard enough. It is slightly enlarged and this is all leading up to the fluid I'm retaining around my lungs. It's all starting to make sense.

My nights were getting really bad. I think, looking back, that I could see that my body was giving up. I'm really hoping that after the baby is born I will start to have an easier time keeping up with dialysis. I'll only need it 3 times a week and possibly for only 3 hours a day. That will really cut back on the amount of time I'm here.

So What of the Baby?

Dr. said he's going to stay in the hospital for 6 weeks. That terrifies me. I'm especially worried that I'm going to be in the hospital for 5 days after c-section and she won't be able to be in the room with me. The NICU people are supposed to come to my room today to talk to us about what to expect. I want to know how often I can go in to see her. I want to know who else is allowed to go in: Alli, my parents? I want to know if I'll be able to hold her. Or will she be in an incubater and all tied up with tubes and wires. I don't like the unknown.

This Weekend

I'm in dialysis now and will be getting another steroid shot today for the baby's lung development. They say the meds start working right away which surprised me. The shots in your ass hurt like hell, by the way!

Besides talking to the NICU people and seeing the cardiologist today, there's nothing else planned for the day.

They are adding a little extra fluid on me today. If that doesn't work out for me then I'll be dialyzed tomorrow, too. It's not my scheduled day. Otherwise, the extra fluid will be "cleaned" during dialysis on Monday and the extra fluid will be helpful during surgery. I'll head up for the c-section right after dialysis.

Prayers, please...

Friday, August 13, 2010

The Baby Is Coming

Monday. My heart is working overtime to keep up with the stress of dialysis. My heart rate and blood pressure are too high. The stress on my heart is causing the fluid to build around my lungs. The OB doctor wants me to get more blood pressure medicines to lower it and get some good dialysis treatments before scheduling a c-section.

I'm due to dialyze tomorrow morning (and will get a second steroid shot for the baby's lungs). They might have me dialyze again on Sunday (in an in-patient room). Then on Monday I'll dialyze and have a c-section.

The baby will be born at a little more than 31 weeks. She will need to stay in the NICU for 6 weeks. The doctor told me to take 12 weeks off of work.

I'm scared.

Dialysis Day 66

Here We Go...

I saw the OB on Wednesday. She called and wanted to talk to me in person (never a good thing). She explained why she wanted me to have an Echo. My nephrologist says that fluid around the lungs is typical in a dialysis patient. But, it's not typical for an OB patient. So, my OB wants to cover her bases and make sure there isn't anything wrong with my heart. She's looking at me as an OB patient, not a dialysis patient. Makes sense to me.

For the first time she told me that she's concerned about MY weight. The baby is getting everything she needs...she's taking it from me. So I'm loosing weight while she is gaining. I'm having such a hard time eating. I'm just not hungry! I know you're supposed to eat alot when you're pregnant, but I'm just eating like normal...not very much. Once again, I have been told that I have one more week to gain some weight or I will be in the hospital.

And then she told me that we will be delivering this child within the month. She seems to be so concerned about my health that she wants to do it soon. On Thursday and Friday of next week I'll be getting steroid shots for her lungs. I'll be 32 weeks. The delivery will be scheduled. But she's not sure now if it will be a vaginal delivery or c-section. My nephrologist will only allow them to give me a small amount of IV fluid. Fluids are necessary for both types of delivery. The doctor is going to do a little research this week to see which will be safer for the baby, and me.

Another Rough Night

My breathing was terrible last night. Jason brought a chair up to the bedroom to see if that would work, but it didn't. I went downstairs again. The only sleep I got was about 45 minutes sitting at the kitchen table with my head on a pillow on the table. It's the only way I could breath. I gained 2.5 kilos since my last treatment. I did drink alot yesterday. It makes it even harder to eat when I can't drink.

I think this will get easier after the baby is born. My dry weight won't keep changing after delivery. It will keep going down until they find the right weight. I'm sure I'll still have to watch my fluid intake.

Wednesday, August 11, 2010

Dialysis Day 65

And The Hits Just Keep On Coming

My nephrologist came by yesterday to tell me he got the results from my upper abdomen ultrasound. There is an abnormality on my liver, one that he said probably isn't a big deal. But it's something that needs to be followed up with x-rays. We'll wait till after the baby is born.

And my OB wants me to get an echo on MYSELF. I only spoke to her assistant, so I don't know her reasoning. But I'm assuming it's because my heart rate has been elevated for so long. An echo is different than an EKG. I'm going to call the OB today to get more details and schedule the echo today, too.

Lots To Do Today

I'm feeling a bit overwhelmed today. I have dialysis till 11:30, a fetal fluid check after that. Then I have a 2 hour computer class for school, need to pick up the cat's medicine from the vet, buy Alli soccer shoes, get her dinner and then ready for practice at 6:30. Add to that the fact that it's bitch-ass hot outside today and I'm not really excited about all the running around.

Toured the Maternity Floor

Last night was Alli's "Big Sister Class." We watched a video about being a sibling and she got to hold a baby doll. She changed the doll's diaper and had to decide if we had a baby girl or boy. She wasn't sure! But when we took a potty break she told me she had it figured out.

Next we got to take a tour of the maternity floor. I'll start in one room for labor and delivery and then move to another room for recovery. Some of the recovery rooms have two beds...so if they are busy I'll have to share a room for recovery. Let's hope not. I have a feeling that I'll be in a single room because of being such a high risk case.

The nursery was pretty empty. Most moms keep the babies in the room with them. If she's well enough to stay with us, I might send her to the nursery at night to get some sleep anyway. They did not take us to the NICU, but that's a possibility for us, too.

Tuesday, August 10, 2010

Dialysis Day 64

What a Terrible Day

I blogged yesterday about getting on the machine late. The first one was not working and the second one needed its "guts" changed. By the time I got on it was 8:00 when I'm supposed to be on at 7:00. I also had four different OB nurses. The one that was scheduled to be here got sick so they had a couple of other people come down to take turns with me.

The last OB nurse made me so mad. I had just been taken off when she noticed that my blood pressure was a little high. Now keep in mind, my blood pressure has been high since May. Yesterday it was no higher than it has been in the past couple of weeks. She freaked out and called the OB. Funny, I just saw the OB on Wednesday and she was fine with my pressures. I told the nurse that and the dialysis nurses told her the same thing. But she was insistent that the OB doctor know. Twenty minutes later the doctor called and wasn't that concerned, but to appease the nurse she called for some blood work. But my blood had just been "cleaned" and any tests they do wouldn't be reliable. Plus, the work they wanted was the same work they took at the beginning of my treatment. The OB nurse insisted they take the blood...but the dialysis nurses took a stand and told her no. It was like the OB nurse was on some sort of power trip.

I left in tears because I was leaving an hour and a half late. When I called Jason he made me realize that I was just upset because I was so tired. Two nights without sleep will make me a bit emotional. Once I settled down I was fine. I took a little nap when I got home and felt a little better.

Much Better

I slept last night. Yeah. I asked them yesterday to take my weight down a little bit and they did. I only gained 0.8 kilos over night and was able to sleep much better. I am having pain in my right shoulder where my catheter is. But the doctors and nurses don't think that it's related to my catheter. My problem is that I can't sleep on my left side because of my fistula, I can't sleep on my back or stomach because of the pregnancy, so all I've got is my right side. I wish I could just float in the air and have no pressure on any part of my body.


I'm watching and listening to the Today Show like always and something really strange happened. All of a sudden the sound didn't match the picture. The voice was a woman and she was praying for "healing." Should I consider that a sign of some sort? I'm not really one that believes in signs, but this was a bit strange...praying for healing while I'm on dialysis? Weird!

Monday, August 9, 2010

Dialysis Day 63

Sleep Much?

Nope. Not me. They raised my dry weight on Saturday. One doctor wants to raise it half a kilo every week. The other doctor wasn't too sure about it. And this weekend when they did raise it I couldn't breath and my feet and ankles swelled. I asked them to bring me back down today. We'll see how it goes.

Machine Trouble

It's not my lucky day today. The first machine they tried me on wouldn't start up. So I was moved to another machine. They started me on it and it wouldn't return my blood. Next we had to take 20 minutes to change out the system. They finally got me going an hour after I was supposed to be on. So frustrating. But I can really feel the fluid coming off. I hope I feel better tonight.

Nobody seems to be in much of a hurry today. All five of us in the Pod got on late today. I'd imagine that puts everyone behind for the rest of the day.

OB Nurse

She just got up and ran away. When she returned she said she's not feeling well. Great, another puker.

Saturday, August 7, 2010

Dialysis Day 62

Saturdays Are Boring

It's Saturday and everyone is in a good mood. Not much is going on and I didn't have any appointments yesterday. So there isn't much to report. My nurse was here early so I got on right on time. This one's a good one. She is always here on time and is very personable. She talks to me sometimes and other times just reads her book. Just what I like.

My blood pressure was 121/82. Hooray!

Friday, August 6, 2010

Dialysis Day 61

More On The Ultrasound

If you read the Ultrasound Update, then you know that my appointment went well. The baby gained a large amount of weight since two weeks ago. She weighs 2 pounds 12 ounces. And if she continues at the same pace then she could possibly be 6 pounds 8 ounces in four weeks! They are still saying that her head and abdomen are measuring small. But, they are growing at a constant rate. That's good news.

I asked lots of questions at this OB appointment. The one that was most important to us was "What should we expect after delivery? Will she be whisked away or get to stay in the room with us?" Jason and I are really concerned about this. We just want to know what to expect. The doc said if she's at least 34 weeks then there is no reason to expect that she'd need to leave us. Jason and I have already talked about what I want HIM to do if she does leave us. I'd rather he go with her than stay in the room with me. I'll be fine.

I asked if I need to talk to our pediatrician about our situation to make sure they are aware. The doc said it might be worth a call but there is no reason to make an appointment.

I asked about steroids to help develop her lungs. The doctor said that she's been through alot of stress and stress is actually good for developing baby's lungs. She said that if MY health starts to decline and they feel like we need to deliver to save me then they'll do steroid shots for the baby. But until then, we'll forget about it.

The OB doctor also said we need to start coming up with a plan for dialysis after delivery. When you deliver you are given fluids, so I'm going to be getting more fluid than I'm supposed to get in one day. If it's not my day to dialyze, they might want to send me down anyway. I'm excited that we're starting to talk about delivery plans. If I knew the baby would be healthy I'd want her out now!

Ultrasounds Yesterday

I had an upper abdomen ultrasound yesterday to prep for transplant. They took a look at my liver, pancreas and gall bladder. The first thing the ultrasound tech said when she started was, "Oh! You're pregnant! I wasn't sure!" I know I'm small, but I think it's starting to become visually obvious that I'm pregnant. She's a new mom, so she stopped the upper abdomen ultrasound and started looking at the baby instead. I think she thought she was doing me a favor, letting me see the baby. I didn't have the heart to tell her that I've seen her enough! She said that when she was pregnant she did an ultrasound on herself once a week. She lost her first baby, so I guess I probably would have done the same thing.

I also had and ultrasound on my fistula to see if it is ready to use. The doctor wanted it to be 7 millimeters in diameter all of the way up my arm. Unfortunately, there were several spots smaller than that. There were also spots as wide as 10 millimeters. So he doesn't want them to use it until he can do an angioplasty. That's when they take a balloon and send it up the vein and stretch it to the diameter that they want. It involves radiation, so he's decided to wait until after the baby is born, just to be safe. That means I'm keeping the catheter until I deliver. Maybe they'll do it while I'm inpatient after the baby is born.

Poor "Monica"

"Monica's" fistula looked nasty. And I guess it wasn't working, either. Yesterday she had surgery to remove it, get a graft and a catheter. She needs the catheter until the graft is mature enough to use. She's a mess now. She's in pain. The doctors gave her lost of pain medicine...but you know how that makes some people react...throw up. Yeah, and she's the loud puker. Can't wait for today!

Wednesday, August 4, 2010

Ultrasound Update

I wasn't sure if some of you could wait until Friday to hear about today's ultrasound. I was a bit upset at first because the ultrasound tech made a comment about her belly "really falling off." Then she said, "she's only 2 pounds 12 ounces." Two pounds 12 ounces? She gained 13 ounces in 2 weeks! The doctor called her an over-achiever and said she was very happy with her growth since the last ultrasound. More to come...but in the meantime...good news! I needed some good news.

Dialysis Day 60

No Sleep Again

At least I wasn't throwing up. But I had a terrible time breathing again. I feel out of breath when I do something as simple as walk to the bathroom or roll over in bed. It feels like I'm running a marathon! I'm wondering if it has to do with my elevated heart rate. It's been in the 120's for a while now. The doctor said he can't give me any meds for it since I'm pregnant.

So, this morning I'm on lots of monitors. First, the two tubes to the dialysis machine. Then one for oxygen, the tube for the blood pressure cuff, three cords for my heart monitor, a tube to measure my blood oxygen and two cords to monitor the baby's heart rate and contractions.

Speaking of Contractions

I'm having them, still. I have more during dialysis than when I'm home. They are not consistent and don't really hurt. It just feels like the baby is balling up in my stomach. I get an ultrasound and see the OB today. I'm wondering if they will do an exam to see if I'm dilated. I might ask them to just in case since I keep having the contractions.


I started my insulin shots yesterday. I was scared until I did it. The needle is so small. It's thin and short. I did feel a little funny doing it all in the car in Breugger's parking lot. I guess it worked. I ate a bagel and my sugar was within normal range when I was done. Good deal.

Echo Yesterday

My echo yesterday looked good. It was a different doctor that read the ultrasound, so two doctors think things look good. I have two more echos (two weeks and four weeks from now). As long as things look good during these two appointments then we can stop with the appointments. Fewer appointments...I love it.

Tuesday, August 3, 2010

Dialysis Day 59

More Trouble Sleeping

Last night was probably my worst night sleep so far. I fell asleep fine around 9:30 and I slept until around 11:30. Then things got bad. I had trouble breathing and made several trips to the bathroom. The last one around 12:30 was to throw up. I haven't thrown up since I first started dialysis. I spent the rest of the night sitting up on the couch downstairs. I was a sweaty mess when Jason came to get me at 6:20.

When I got here and told the nurse what was going on she asked what my input and output were. Um, I could probably estimate my fluid intake and output, but I didn't think they really wanted me to measure it. And the bottle of water that I thought was 12 ounces really is 17 ounces. Oops.

I'm feeling really good now, just tired. Might be one of the few days that I get some sleep during a treatment.

OB Nurse Scared Me

I have a nurse that has been here before. She's really nice. She asked how the baby was growing and I told her about the baby's head and abdomen measuring small. I also told her that she gained over 300 grams instead of 400 in a month and she asked me if the doctors have talked to me about putting me in-patient...strict bed rest. I want nothing to do with that! I still have 10 weeks left until I'm full term. That's 10 weeks without being at home with Jason and Alli. Can't happen.


They didn't use the word "diabetes" but I'm starting to give myself insulin today at lunch time. They don't usually have ladies taking insulin at lunch time. And I was told that most women give themselves 100 units of insulin per dose. I'm only taking 4 units. Seems like a waste of my time to me. Is it really necessary?

Monday, August 2, 2010

Dialysis Day 58

I Forgot

I forgot one more thing that made Friday bad. They reviewed my blood sugar and now they want me to start giving myself insulin shots at lunchtime. I'm sure the reason my sugar is high after dialysis is because I have to eat on the run between appointments. It would be easier to eat right if I could just go home and relax. A nurse is coming down to dialysis this morning to show me how to give myself the shots. Apparently I'm supposed to shoot myself if the "fat" part of my stomach. Hmm...I don't have any fat around my stomach. Guess we'll figure something out.


I clotted the machine again on Saturday. Part of it has to do with not getting blood thinners like the other patients. Adding to that is the fact that my hemoglobin is getting higher. I started out with a blood count of 5.8 which is terribly low. I was transfused with 3 units of blood and they've been giving me a medicine called Epogen which helps my body make its own red blood cells. Now my count is above 12 which is great! In fact, they didn't give me my Epogen today since it was so high.

Crazy Schedule

Last week my schedule wasn't too bad, but this week is out of control. Monday: Dialysis, Alli to the dentist, Alli's soccer pick-up, and to visit our friends' new baby at Christ. Tuesday: Dialysis and echo at Children's. Wednesday: Dialysis, ultrasound and ob appointment. Thursday (my "day off"): Gall bladder ultrasound and ultrasound of my arm. Friday: Dialysis. I hope I can keep it all straight.

Causing Problems Again Today

I'm not sure what "conductivity" means in terms of the dialysis machines, but my machine was having troubles gaining "conductivity." So about 45 minutes into my treatment they had to wheel me to another machine. It was a loss of time, but not a loss of blood. Now I'm in the center of the Pod and there is a cooling vent right over my head. My hands are already getting cold. I might just need a blanket this time.

OB Nurse

She looks ticked off that she has to be here. She has a book to read but every once in a while she gives me a look that could kill. Sorry to bother her.