Big kids medical update

Adam and Sara had a routine ultrasound last Friday and visit with their Pediatric Urologist, Dr. Rhee. We are now on a first name basis with that ultrasound tech. I can't even remember how many times he has put jelly on the belly of all THREE of my kids! They were especially goofy that day so it's a good thing Matt is used to us. I think I caught him a little off guard because it is routine to collect a urine sample for those ultrasounds. He was putting the label on the sample cup and I said "Umm, I'm not doing a sample today for Sara." He said "You're not?" I replied "No, we just did a sample a few days ago when we were worried about a UTI." Then he was putting a label on a 2nd cup and I said "I'm not doing a sample for Adam either." Oooookay. It is very uncommon for boys to get a UTI and that is what they would be testing for. I don't really like to do extra things but I'm sure there aren't many parents who make those kind of decisions.

The other funny thing that happened was that Matt couldn't find Sara's bladder for a few minutes. He takes quite a few ultrasound pictures and then he needs pictures of her bladder both full and empty. She peed so much out he couldn't find it! We were laughing pretty hard and I don't think he knew what to do. Finally after 3-4 minutes of searching, her body processed a little and he took a photo. The report indicated her empty bladder had less than 2mL in it!

Then we headed to Dr. Rhee's office to discuss the results. The kids have been doing fantastic. Sara's most recent blood work with her kidney doctor showed everything status quo so I wasn't expecting any curve balls.

The kids just love the fun tables in his office.

First we discussed Adam. He has always been the easiest to talk about. He is a text book case. He is about 2 years post surgery and it has been about a year since his last ultrasound. His healing is going very well. His kidney is still a little dilated. I expected him to be released from follow up. But Dr. Rhee said another ultrasound in 1 year and then an ultrasound every other year until he is full grown! This completely surprised me and I don't recall this kind of follow up ever mentioned before. He needs to continue to monitor Adam's kidneys as his body grows to make sure the scar tissue doesn't change and the blockage returns. There really would be no other symptoms other than seeing it on an ultrasound.

And then there is Sara. *sigh* The first words out of his mouth were "There has been significant change since her last x-ray 18 months ago." I am glad I called his office Monday and suggested an x-ray. I was so shocked I didn't really know what to say. I gathered myself as he walked me next door to where the images were on his computer screen.

The first image is of her x-ray in June 2013.

There is a little shadowing of remaining stones after her lithotripsies but not much. The next photo was the x-ray from last Thursday.

I have put a red circle around the kidney stones. 6 on the right have become more calcified and there are a few on the left, as well. All of them on the right measure 6-7mm or about 1/4 inch. It is this image that has remained ingrained in my mind over the past week. The last thing I see before I close my eyes at night and the first I see when I wake up. As I go about my day, it feels ever-present. To say it took my breath away is an understatement. But I gathered myself to ask questions. Dr. Rhee shook his shoulders and said "We are in uncharted waters." Honestly, we have never been in charted waters. 

"The stones being more calcified means they are harder and may be easier to remove robotically, whereas in Boston they were soft and kept breaking up when the robot would try to grab them." I thought you didn't want to do surgery because her kidneys might not survive? "Well, we can't leave the stones in there now that they have changed so significantly or they will destroy her kidneys." So surgery might destroy her kidneys but the stones will. Not good options to decide between.

"At this point my recommendation is to get another VCUG in the spring to check on her reflux. If it still exists, I would plan for robotic surgery to correct the reflux and remove the stones that are most prominent. But I'm just giving you information so you can decide what you want to do." We still don't have any idea why her body is making stones. No lab work appears abnormal. She does not have a diet high in salt. She drinks a lot of water and is very active. She just continues to be a mystery to all of her doctors. You would think someone would want to use her as a research project!

We gathered our things and headed for a treat to celebrate how well the kids did during their visits. Adam chose a cake donut with chocolate frosting and sprinkles. Sara and I split a chocolate frosted, white cream filled donut. And some applejuice. Then Sara and I had a conversation I will never forget.

Well, Sara, that wasn't the news we were hoping for. "No, Mama, it didn't sound like it." I guess we need to just keep praying. "I guess we need to pray for a miracle, Mama."

My mind can't even comprehend how she can run and jump and giggle and be on the top of a cheerleading pyramid yet inside her body is this hidden disease that we didn't even know was growing again. Sometimes I wonder how old she will be when she will need a new kidney. Seeing her with Evan makes me yearn for a child of her own someday. I know she is only nearly 6 but going thru all of this makes me process things much differently.

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Over the past week I have...
Tracked down the doctor who performed her surgery in Boston as he relocated to Arizona and has not started practicing yet. He is going to touch base with Dr. Rhee and schedule a phone call with me to get up to speed and provide a second opinion. He is considered the best of the best.

Talked to Sara's nephrologist and asked him to re-review all of her lab work to see if something has been overlooked. He has a colleague in Chicago that he is going to contact for a second opinion. I am considering calling Boston as the children's hospital out there has a Pediatric Kidney Stone Program.

Talked to Samaritan Ministries, our Christian health sharing program, to see how they wanted to handle these most recent visits and moving forward to next steps. We do not have insurance so there are additional steps we have to take with medical costs.

Received copies of all Sara's medical records and images over the past 2 years.

Looked at the calendar for tentative times for a VCUG procedure without missing school.

As for that miracle that Sara mentioned, that is next on my list to ask for. Every. Single. Day.

Happy Thanksgiving

We had a nice, quiet Thanksgiving at home. A little parade watching, a little dog show watching. And we relaxed by the fire.

I made a turkey breast, mashed potatoes, sweet potatoes, gravy, corn casserole, marshmallow fluff, and pumpkin bars. My mom made a jello salad that was a big hit with the kids. The meal was great and the dining room table wasn't scattered with Legos, Christmas sale ads, and craft projects! Both kids said they liked the table clean and asked if we could keep it that way!

Before we dug in, the kids reminded us that we had to go around the table and say something we were thankful for. I have always thought that sounded like a great idea but have never done it. Sara was in charge and decided the order of who was speaking. Adam was first--he was thankful for our house, which makes sense because we have about 10 drawings of our house hung on various walls right now. She chose my mom to go next and she was thankful for 3 grandchildren that are healthy. Then it was my turn. I was already feeling emotional over mom's comment. I was thankful that we were now a family of five and God brought us Evan. Dad? He was thankful for a house full of family. And finally Sara. She was thankful for Ivy, our dog, and Muffin who continues to get to nap in heaven.

Another thing I am thankful for is Sara's health. She had a visit a few days ago with Dr. Gordillo, her Pediatric Nephrologist, to check in on her kidneys. They had done a full blood work up and urinalysis the week before. She was such a rock star when they drew her blood. She watched the needle go in and didn't flinch or cry. She just amazes me. Everything looks great and her kidneys continue to function well. There is no protein in her urine, she is not anemic, her blood pressure remains in a very healthy range, she is growing, and she is gaining weight. All factors that we continue to watch as signs that her kidneys would begin to fail. She has actually grown 1 5/8" since her last appointment in April and gained 3 lbs. She has grown 3" over the past year! That is quite impressive for her considering that her growth had stopped when her kidneys were filled with kidney stones before her Boston surgery. This appointment was the most she has ever talked to Dr. Gordillo. Usually she says she is going to ask him questions and then she gets shy and backs out. But this time, she told him all about how she tripped on the way to the bus, put holes in both knees of her pants, and we are going to cut them off above the knee to make shorts. She is to continue her daily blood pressure medication and antibiotics and go back in 6 months. Both kids have renal ultrasounds scheduled for January.

I am also incredibly thankful for this little guy. Evan hung out in a chilled environment at 5 days of life for 6 years until we were able to rescue him. Going thru the infertility process is on the list of one of the most difficult things I have had to endure. It takes an extreme amount of commitment for doctor appointments and injections, not to mention the emotional roller coaster. Our family of five is now complete!

Out of the mouths...

A few days ago I was feeding Evan in the nursery. Sara was standing outside the door with a small stuffed animal rabbit in her arms, swaying back and forth. She had a nipple from a bottle shoved inside a play ice cream cone and was feeding her "baby" while having a conversation with me.
My baby is 6 weeks old. She was soooo tiny when she was born. With all my pumping and eating and brushing my teeth, I don't have much time left in the day.
Really?
Yeah. Well, I used to have 2 babies but I gave one away. I just didn't have enough time.


Sometimes our mornings getting ready for school are...well...challenging. I never know if it is going to be a meltdown day. Sara can wake up in the best mood and then when she walks upstairs to get dressed she turns into a different person. She can complain about every little detail and then change her mind until her head spins. On one particular day, she was arguing with me.
I don't want to go to school...all they teach is phonics. I hate phonics. I don't want to go to school.
Okay.
I don't want to go to school. You're not even listening to me.
Yes I am. I don't care.
I don't want to go to school.
I lost count how many times she told me that over and over and over again. Too bad I'm nursing or it would lead me to drink. All the way downstairs while getting shoes on. All the way down the driveway. Then she sees the bus coming and starts running.
Bye, Mommy!
And off she went. *whew*


Adam and I were having a conversation about his social life at school.
Mom, I don't have any friends.
I thought you told me the other day that you had 3 friends.
Well, Kathryn didn't want to be my friend. I gave her a nice rock and she gave it away to Charlotte cuz she said it was dirty. That's what I got out of her. I told her I washed all the dirt off and dried it but all she did was complain.


A few months ago we got a new car. Sara and Shannon were talking about what to do with the truck that we were going to sell.
Now that we don't need the truck why don't you just leave it at the dealership so someone steals it?
I have things still in there that are important to me.
Well, clean those out and then someone can steal it.


I was trying to talk to Adam about some issues he had been having at school. Shannon said he mentioned that maybe some kids were bullying him.
Adam, Dad said you told him some kids at school aren't being nice to you. We have parent teacher conferences coming up so if I need to talk to your teacher about something, you can let me know.
Mom, do you know who I'm in love with?
What?
Do you know who I'm in love with?
I thought we were talking about kids being mean to you.
Kathryn. She's soooooo C-UTE!


Sara noticed that sometimes I breastfeed Evan from the left side and sometimes the right.
Mom, why do you switch sides when you feed Evan?
Well, my body makes milk all day so if I only feed him from one side, the other side will get really big. It's like a water balloon. What happens when we keep putting water in a water balloon?
IT POPS!
Oh my! That's not quite what I was going for. 

Welcome Evan Michael

September 26. I slept on the couch all night. Shannon got the kids ready for school and on the bus and headed to work when my mom arrived.

Around 8:00 I started feeling really bad again. I could barely walk to the bathroom without being hunched over.

At 9:00 I took a bath to see if it would help me feel better and relieve some of the pain. Guess I needed a bigger tub because the water was exiting the emergency valve and I couldn't even submerse my belly. (Note to all the people who kept telling me how small I was.)

At 10:10 I texted Shannon "Contractions hurting worse than yesterday. This isn't fun anymore."

My mom really didn't know what to do with me. I couldn't walk. I was doubled over, moaning in pain, but fearful that if I went to the hospital they would just send me home again.


At 11:51 I started spotting and contractions were 2 minutes apart. There were many times I had contractions 2 minutes apart over the past week but since I was spotting I decided to go to the hospital. I called the neighbor to ask if she could get the kids off the bus because they had a half day. Mom was a nervous wreck because she didn't know how to get to the hospital.

At 12:00 the bus came early as mom and I were in the driveway. Adam came running across the yard to greet me and about knocked me over. Sara was strolling along, enjoying the day, as I'm doubled over in pain and I hear her say "Look mama a butterfly!"

15 minutes to the hospital, waiting for mom to park in the crowded parking lot, the long wheelchair ride to the other end of the hospital from the Emergency Room, getting dressed in hospital garb and hooked up to monitors.

Finally at 1:03 I texted Shannon "Water bulging. Dilated to 3-4."

1:08 "Admitting me."

They drew blood to test for various things in order to get an epidural. When she told me it would be at least 30 minutes to get results, I knew things were moving too quickly and the pain meds were not going to be possible.

I got wheeled into my delivery room and lots of people were in and out. They checked me again and I was dilated to a 5-6. Not five minutes later a doctor on call came in and said he wanted to check when I was having a contraction...dilated to a 7-8.

At 2:13 I called Shannon "WHERE ARE YOU?" He said "I had to finish some things at work. I am just now leaving." Apparently the urgency of the situation had been dulled by my previous 2 false alarm hospital visits. And people had been bugging him about missing deadlines throughout the previous week. Last I checked, medical issues with your wife should trump work deadlines but I guess that is not the case at Big Yellow.

I called my boss to see if he could help with Adam and Sara for the evening. We have been friends with his family for years. Thankfully, I only had to give one sentence of an explanation and he said "I will take care of it" and I didn't have to think about it again. He coordinated with my neighbor to get the kids, clothes, have them spend the night, etc.

At 2:21 my water broke. Actually I discovered it wasn't my water. It was blood. Now the fun began. Some of the worst fun of my life.

I gave my mom and her queasy tummy permission to leave the room. Since she had someone else take me for shots when I was younger and wasn't in the room when I got stitches in my broken finger, that was probably a good call.

Around 2:45 Shannon finally arrived completely out of breath. It's amazing how quickly time goes by when you are pushing every few minutes. I know it was terribly hot in the room but they couldn't turn the fan on because it would make the baby too cold. I remember seeing the two people from the NICU standing in the corner with the isolette, just waiting. And at least 5-6 people around my bed. I was exhausted from not sleeping well over the past week and already being in labor. After a while they put an oxygen mask on me for some reason. Apparently they thought I looked tired, too. Another doctor came in for a consult. They really didn't want to use forceps because a preemie's head is even more sensitive. Whoever came up with the idea that she should put her hands in me to help should be shot. And whoever handed Shannon the washcloth to wipe my forehead while he got distracted chatting with people should be...well, you get the point.

After 2 hours I think everyone was sleeping on the job. I was getting annoyed. Apparently enough for one good push while playing towel tug of war and...out he flew! Talk about a good way to get people to jump!

4:27pm, 7lb 2oz, 20.5" meet Evan Michael

For the first time I got to hold one of our babies just after birth instead of seeing them across the room with a team of doctors and then being whisked out of the room. It was a very surreal moment.

He's perfect. Just perfect.

2nd trip to the hospital

After spending a few days in the hospital and being released, I was pretty miserable at home. Contractions off and on, painful to walk because I was holding so much water from the IVs, very little sleep. For 2 days I suffered thru and either Shannon or my mom was always with me. Shannon's parents came on Wednesday to visit for Grandparents activities at Adam and Sara's school. They spent the day helping with laundry, getting the nursery ready, putting together the stroller, installing the car seat, and fixing some things around the house.

Thursday morning Shannon dropped everyone off at school early for the Grandparents event.When he got home, I told him my contractions were worse and I thought we should head back to the hospital. We made arrangements for my neighbor to pick up the Grandparents and headed back to OSF. For the 2nd time in less than a week. No surprise that the staff remembered me and said "Weren't you just here not too long ago?"

While they confirmed the contraction were intense, they just weren't affecting my body and there was no change in my dilation. Still 2-3cm but thin so when things do progress, they will do so quickly.

I was so upset when they sent me home again. I was absolutely miserable  and had no idea when I should head to the hospital if that wasn't the right time. That was September 25.

Short hospital stay

Saturday early afternoon I was at our semi-annual twin sale helping with a light duty task while seated. I got up to go to the bathroom and felt a sharp pain in my lower belly.  The pain kept getting worse and I was barely able to drive myself home. An hour later Shannon and my cousin Emily got home. After not being able to get myself off the couch to walk to the bathroom and shaking with chills, I finally conceded to a trip to the ER. They took me right to the Labor and Delivery floor. I was running a fever and in unbearable pain. An ultrasound revealed the baby was just fine and there was no impact on my cervix. However, I was having contractions 1 minute apart and could not tell at all. They started an IV for fluids and antibiotics, drew blood, and got me ready for a room in Antepartum. Epic fail for the first nurse trying to put in the IV. I finally had to cut her off after she rooted around in my arm for the vein she couldn't find for quite some time.

Unfortunately, it was a teeny room with a roommate. The worst part was that she ordered in extra spicy Thai food for dinner that stunk up the whole room. Kudos to the nurse who got me a fan to be pointed out the door to help clear the smell.

They pushed Tylenol trying to get my fever down and kept the IV fluids going throughout the night. Not enough fluid to make me have to go to the bathroom. Yeah, right. Every hour or two I was calling for the nurse. It took both her and Shannon to get me out of bed and help me walk to the bathroom. I was in tears the pain was so bad. Contractions were still 2-3 minutes apart and I was feeling them less than half the time. At least I got to enjoy breakfast in the morning.

Sunday morning my ob, Dr. Kindred, rounded to check on me. I had gone from a closed cervix to dilated to 2-3 and very thin in less than 24 hours. They moved me to a Labor and Delivery room immediately, expecting Baby Mo would come that day. All food and liquid was stopped and the IV fluids were increased. They didn't want me to have a full belly in case I delivered. A terrible stab to my thigh welcomed the first sterroid shot to help with his lung development. Contractions remained 2-3 minutes apart until Sunday night when I decided to have some IV pain meds to help me sleep. Thankfully late Sunday night the original pain in my lower belly subsided greatly and I could get out of my bed and walk on my own. The nurse said my contractions were improving, which meant 2-5 minutes apart. How is that improving? My unexplainable fever finally broke. I also got the 2nd nasty steroid shot. Rather than the standard 24 hours apart, they administered them 12 hours apart just in case.

Monday morning Dr. Kindred rounded again. He was shocked that I didn't deliver. Contractions were 2-8 minutes apart and there was no change to my cervix in the past 24 hours. He ordered the IV be stopped, allowed me to eat breakfast, and suggested I move around a little more to see what happened. He was considering discharging me. "The baby will come quickly with the condition of your cervix so just pay attention to your contractions." Now how am I supposed to do that when I have been saying I can't tell I'm contracting? Talk about making me nervous. Basically we are making sure I am not left alone. I enjoyed breakfast, took a shower, and they decided around noon to discharge me. Then I waited over an hour and a half for an electronic signature to authorize my discharge. They finally just let me go.

Instead of coming home with a baby, I came home with these beauties...10 pounds of weight gain in my legs from the IV fluid. Painful and very difficult to walk.

I had a follow up OB appointment this morning. Weekly appointments from here on out. Limited activity for 2 weeks so we can try to make it to 36 weeks and avoid NICU time. Suggested something else for my heartburn that is awful--or what's another word for awful? Sleep inclined. The swelling will go down in my feet but probably very slowly. Lay flat and elevate my feet above my heart. So one position helps my feet and the other position makes me feel like throwing up from the heartburn. Choices, choices!

As for Baby Mo, here he is...

Can you see his face looking right at you on the right side?

He continues to measure 3 weeks ahead and is about 7lb 7oz right now. Holy cow!

The amniotic band is completely gone--woo hoo!

I can't end this post without saying a big thank you to my mom. When I left the house Saturday, she took care of everything with no questions and no complaints. Feeding and wrangling the kids, handling bedtime, keeping them entertained, packing school lunch, getting them ready for school and on the bus, cooking dinner, etc. It makes for a long day and she certainly isn't used to getting up at 6:30am. Thanks mom for your selfless sacrifice to step up when I have needed it.

Also to my most awesome neighbor who went grocery shopping and tag-teamed getting the kids ready for school with my mom. It made for a much smoother transition without any meltdowns!

Our first shoe tie-r!

Finding Adam shoes that do not tie is a challenge. His feet are so big that the size typically has laces--he is wearing a 13 now. With him going to school, I felt like it was time to learn how to tie on his own. Over the past month I would teach him more and more of the steps as we had time and patience. He wears flip flops so much in the summer that it wasn't very often he even had tennis shoes on. A few weeks ago we finally got to the point that he really could do it on his own but he didn't have much confidence or it wouldn't be very tight. One day before running errands I was trying to encourage him to do it but he just wasn't having it. He did part of one shoe and then whined for me to do the other one. I refused, which led to a huge meltdown. He walked outside to get in the car with one laced and the other dragging behind him in the wet grass screaming at me. Once he got in the car he undid the only shoe that was tied and kicked them both off his feet. Mean mom that I am, I made him get out of the car, put his shoes back on, and tie them.

Where were we headed? Shoe shopping of all things! He tried his first pair on at the store and I told him I wanted him to tie them and I was going to stand behind him and not look to see if he could do it. He finished it up and was grinning from ear to ear, so proud of himself, as I gave him a big high five. The next day, he got himself dressed for school upstairs and came down with shoes on and they were already tied! Now tell me, what was the point of that melt down the day before?

He is concentrating so hard! I can't believe how big he looks in these pictures!