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

Thursday, September 30, 2010

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.

Tuesday, September 28, 2010

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.

Saturday, September 25, 2010

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


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.

Thursday, September 23, 2010

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.

Tuesday, September 21, 2010

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.

Saturday, September 18, 2010

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.

Thursday, September 16, 2010

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.

Tuesday, September 14, 2010

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.

Saturday, September 11, 2010

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!

Thursday, September 9, 2010

The Sun'll Come Out...


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!

Tuesday, September 7, 2010

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!


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.

Saturday, September 4, 2010

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.


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!

Thursday, September 2, 2010

Rough Day


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.


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.