DMSA Scan #2 Done!

Friday, May 27, 2011

With a little help from Mickey Mouse and Pink Bear, we successfully made it through Emma's second DMSA scan!

We have had several questions about why we needed this test or if Emma still has VUR so here's the rundown. The DMSA scan doesn't tell us is Emma still has VUR or really have anything to do with the VUR itself. It's simply a nuclear medicine test that provides a detailed picture not only of how the kidneys look, but how they are working. So they look for things like kidney scarring/damage as well as how hard both the kidneys are working. In cases where children have reflux only on one side (like Emma), you would expect that one kidney would be working a little harder than the one on the side with the reflux. They measure that part of the test on a scale of 0 - 100 where you actually want the results to be 50 - 50, meaning each kidney is doing exactly 50% of the work. Any numbers between 40 - 60 are good. During Emma's 1st DMSA scan, she measured at exactly 50 - 50, which the nurse said she hadn't seen in her 15 years of working in pediatric urology. My little overachiever. Ha!

So back to the point...the only test that will tell us if Emma still has VUR, is a VCUG test, which we will have again in a year. During the DMSA scan, they inject Dimercapto Succinic Acid through the IV and it goes directly to the kidneys but only stays radioactive for a few hours up to a day. Then you have to lay perfectly still (ergo the sedation for a toddler) and use a special camera to perform three different scans and hopefully diagnose any problems at their earliest stages. Even though Emma hasn't had any UTIs since her first one (which was before her first scan), that doesn't mean that there couldn't be some impact to her kidneys, so we still had to do the test.

Emma actually did really well that morning despite only being able to have clear liquids until 10:00AM, then nothing after that. I was nervous at first since she woke up asking for lunch, but she was a trooper. We left the house at about 10:30AM and she fell asleep in the car pretty quickly. Usually, Emma's "Pink Bear" doesn't leave her crib, but she has a special connection with Pink Bear, so we brought him along as well since we knew it would be a tough day. Emma has been naming all of her stuffed animals lately so the house is filled with stuffed animals named chocolate, Charlie, etc...but she refuses to give Pink Bear another name. If you ask her what the name of her bear is, she says "Pink Bear". :)
Because of all the tests that Emma has been put through at the doctors in her almost two short years (any fever at all means a catheter at the doctors) she has a big fear of anything related to the doctors. She even freaks out when we take Shamus to the vet because she knows its some kind of doctor. So yesterday was tough from start to finish even with the little things like getting blood pressure, or taking her temperature, or getting her weight, etc. But the nurses were amazing and in between "stuff" they let her play (and play with stuff she probably wasn't supposed to haha). So here she is "working", just like Mommy and Daddy. So we at least at some short parts of the day when Emma wasn't in tears. This was one of those times, and during our two short bus rides to go see her Pediatric Urologist.
Then came the not-so-fun stuff. Emma is just like Mommy in the sense that she HATES anything on her toes. So it was quite the challenge to put the blood-oxygen monitor on her toe, but that was a piece of cake compared to the IV. In order to the get the IV, they had to strap her down, tape a board to the back of her left hand and then put the IV in. This was one of the hardest two parts of the day. She was screaming. It took about three nurses to handle it, so there was pretty much only room for Mommy to try to calm her down. This is where Pink Bear came into play. Everything that Emma got, Pink Bear got first. It's hard to tell, but Pink Bear has some tape on his toe, just like Emma. He also got some pink tape like Emma, and even got his left paw taped to the little board like Emma did too. That helped a little at first...that's when Mickey came to help.

Emma LOVES Mickey Mouse. She especially loves the Mickey Mouse Clubhouse show on the Disney Channel and she watches it every morning, and pretty much every night before bedtime. On her favorite episode, Mickey and Pete fly up to the clouds to where the giant lives and they need to get Mickey's hot air balloon back. When they get to the giant's house, Pete gets scared, but Mickey helps Pete by telling him how brave he is. So that's what we did.The conversation went a little something like this...

Emma:  ::: screaming for Mommy :::

Mommy: "Emma....listen. Listen to Mommy. Can you hear Mommy?"

Emma:  ::: sniffle sniffle ::: "Yeah....(sniffle)....okay."

Mommy: "Do you remember when Mickey and Pete flew up to the sky to go meet the giant?"

Emma: ::: sniffle sniffle ::: "Yeah....(sniffle)....scared."

Mommy: "That's right, Pete was scared wasn't he? Just like Emma is a little bit scared too right?"

Emma: ::: scream :::: "yeah....lil' bit scared"

Mommy: "But it's okay right, because Emma is brave just like Mickey and Pete!"

Emma: "Mickey, brave. Emma, brave."

Mommy: ::: melts :::

So after that conversation, and a good 10 minutes of her screaming from being strapped down, I was able to pick up my hot, sweaty, tear-filled baby and calm her down in my lap. Just as she got calmed down, the doctor came in to do a small physical to make sure we were okay to use sedation. Poor Emma got so upset again. Then came another doctor to put in the Dimercapto Succinic Acid through the IV which Emma did not appreciated. She got her whole arm wrapped up (she looked like she had a broken hand) and luckily we were off for a little while to go see her pediatric urologist which helped bring my baby back to normal for a bit. We had to take a short shuttle ride but Emma loved every minute of it. Despite being her nap time, with no food or water for hours, she was actually in really good spirits. She also started to talk to Mommy about Mickey and Pete and Emma being brave on the bus too.

During our quick visit with the urologist, we unfortunately found out that next year may be even worse. Emma will go through the same VCUG and DMSA tests, but on the same day, back to back. So instead of it being like a 5 hour day, it will be more like an 8 or 9 hour day. But we are trying not to worry about that until the time comes.  

Soon enough, it was back on the bus headed to finally get to the actual DMSA scan. The scan needs to happen at just about 90 minutes after receiving the acid so after a quick wait in the waiting room, we headed back to start the sedation. Emma got pretty upset again because they tried to take her blood pressure and blood-oxygen levels again. On top of that, they hooked her up and began the sedation. It took about 15 or 20 minutes to really get her "out" and the last 5 were pretty tough because she was fighting in as hard as she could. I was holding her, and it was like holding a 22.4 lb newborn with a giant head that they can't hold up themselves yet. She was squirming and thrashing and hitting all at the same time as her head was flying back and forth. She finally gave in a little and rested on Mommy's shoulder while naming all of Mickey's friends on the nurse's scrubs. Then she was out.

Emma was then strapped into the machine (whatever that monster is called) and her hands were brought up above her head so they wouldn't interfere with the scan. It took another couple of minutes to get her in the right position and then off we were. It seems like a funny time to take pictures, but I almost didn't know what else to do with myself, so it was a good distraction and it was just on my phone. Then they start to run three different tests. One takes about 30 minutes, and the other two take about 10 minutes each. So we then sat in silence for the next hour, watching this machine rotate around our poor baby burrito.


Luckily, Emma was just coming out of the sedation pretty much the minute that the test stopped, so that just reassured me that the staff knew what they were doing and gave her the perfect amount of sedation. She was pretty irritable for the first hour or two after sedation which they said would happen but again, it was tough to control a 22 lbs newborn. We strapped her into her stroller and off we were to the car. We got home just about 4:30 and she would kind of come in and go out for the next hour or so, until she was awake enough we could give her some juice and something to eat. That seemed to help a lot and although she still couldn't walk by the time she went to bed at 7:30, she was must more with it, and could at least talk better without slurring her words.

Jackson also did really well yesterday and was awake almost the whole day, so he let us pay attention to Emma and he went to bed early needless to say the bottle of wine was cracked open before I even got back downstairs from putting the monsters to sleep.

Thank You for the Support!

Thursday, May 26, 2011

I'm pretty much in a panic this morning just waiting to get this day started just so it will end and my Emma will be back at home snuggled in my arms after her DMSA scan is done. Having said that, I did want to post a little something to say thank you to everyone who has left a comment or emailed about my PPD post. I haven't been able to write everyone back yet but please know how much your notes have meant to me and how they have been able to lift my spirits on those tough days.

I feel like I have been doing a little better lately, maybe it's just the medicine kicking in a little more and I actually think that going back to work has helped me. I am certainly a person who thrives on routine, so even if Jackson still isn't in a routine, at least I'm getting back into one. More to come on this topic later, but for now, I can't do much more then worry about Emma's test this afternoon. She woke up asking for lunch today but she can't have anything but clear liquids up until 10:00AM, then it's nothing until after the scan is over and she is coming out of sedation. I'm so nervous about today and if I am going to be able to see her and comfort her while she is screaming from getting the IV. Then we have to hang out for 90 minutes until the test actually starts and she is sedated. So she won't even get to eat until probably 4:00PM today.

Here she was a year ago during the DMSA scan...

I just want today to be over with.

Tomorrow's A Big Day

Wednesday, May 25, 2011

Unfortunately, it's been a year since Emma's first DMSA scan for her VUR so we are heading back to John's Hopkins Hospital tomorrow afternoon for round two. Although this test is easier than the VCUG test that she also has to go through because she gets sedated during the test (where she doesn't during the VCUG) but that also means no food or drink after dinner tonight and an IV tomorrow. Now that she is older and been through a lot of tests and doctors, she has an incredible fear of doctors. So much so that she even freaks out if we take her to an appointment for Shamus at the vet. Needless to say tomorrow is not going to be fun.

She did well during her last DMSA scan other than waking up right in the middle of the sedation, so I'm hoping she does just as well this time around (sans the waking up part of course)!

So wish us luck!

Just Like Prince Said....

Tuesday, May 24, 2011

We're gonna party like its 1999!

It's time for the Birthday Party planning to begin!! Of course this time last year, I had already been planning Emma's first birthday party for three months but this year we are a little bit busier. :) We are also combining Emma's birthday party with Jackson's Baptism which will happen on the same day (one day before Emma's actual birthday). The one thing that I can check off the list so far, is Emma's birthday outfit!

And yes...I know how ridiculous it is. You only turn 2 once though right?!

My Struggle with Postpartum Depression

Thursday, May 19, 2011

This is certainly not a post that I was expecting to write when I starting thinking about this blog two years ago, and it's a post that I have even struggled with writing over the past few weeks. I had a hard time deciding whether or not it was something I wanted to make 'public', or keep to myself and my immediate family. I decided though to talk about my struggle with Postpartum Depression (PPD) because over the past few weeks, I have felt very alone in a lot of ways, and just in case someone else who reads my blog is going through, or has gone through the same thing, they now know there is someone else out there to talk to. For a long time, I didn't know who to talk to about it, and I didn't, and I know now that was a mistake.

Although I decided to share my struggle with PPD, there are a few details and parts to the story that I am choosing to keep to myself. Maybe I will share those things one day, but I'm not quite ready to share everything yet.

The first two weeks after Jackson was born almost felt "easier" then with Emma. Mostly because my recovery seemed to be faster but there just seemed to be something lingering over my head that I couldn't quite figure out. At this point though, it's a blur, and I don't even feel like I remember much about those first two weeks. I was just trying to keep my head above water with two kids under the age of two. Looking back, there were certainly signs of the PPD setting in already, but in the moment, it was far from my mind and I assumed that a lot of what I was feeling was natural for having two young kids. I remember talking to Wes and my mom about how I felt like I was 'nesting' more after Jackson was born then before. I couldn't get the house clean enough. I felt like I cleaned every day, all day, in addition to trying to keep Jackson happy, and struggling to keep up with him breast feeding. Despite cleaning almost constantly, the house was a wreck, or at least in my mind it was.

I started to have a lot of anxiety about the house. It was the only thing that I could control at the time, and it felt like I didn't even have control over that. Opening up my linen closet or hallway closet or dresser drawers would give me serious anxiety. My heart would race, my skin would crawl and I would panic. It was like I didn't know where to go, I didn't know where to start. Every task seemed too big to handle. That's when things started going downhill. I became an emotional wreck. This was just about two weeks after Jackson was born.

Everyone kept telling me to sleep. Sleep whenever Jackson slept. I couldn't. The thought of taking that much time out of the day that I could be up doing something, cleaning, organizing, something....made me panic. The minute Jackson would sleep, I would go into a frenzy. I was exhausted, completely exhausted, but it was physically impossible for me to sleep. Yet at the same time, I felt hopeless that I would never catch up to my own expectations. Which turned into guilt, feelings of being overwhelmed, an inability to make simple decisions, irritability, frustration, anger, feelings of inadequacy as a mother, and even more anxiety.

At the same time, Jackson was (thankfully) thriving and eating what seemed to be non-stop. I couldn't produce enough milk through breastfeeding and despite the pediatricians reassurance that I was doing great, I certainly didn't feel like it. Breastfeeding was incredibly painful and I just didn't feel like my body was made for it. I had a lot of the same issues that I had with Emma, but she wasn't nearly as much of an eater so it was easier. I started to pump exclusively because of how much pain I was in. When I started to absolutely dread, and cringe every time I knew it was time for Jackson to eat, I knew I had to start pumping. But because of how much he was eating, and how long it was taking to pump, I was miserable. I could barely get through the day, let alone build up any kind of stash to give myself a break once and a while. So, I broke down and started to give him formula already, which made me feel like a big failure.

My third week at home with Jackson continued to get worse but I continued to keep my mouth shut about a lot of things. I just thought that it would get better. If I could just hold on through the first couple of weeks, it would get better. I thought that it was just because I was so tired. I thought, if I could only get my linen closet organized I would be all better. The late night feedings were tough, but I was getting through them. At least until that Tuesday night. It was 4:00AM and I was up feeding Jackson, just as I had done two hours before that and after 4 ounces of his bottle, he just wouldn't burp. That was the trigger. After 30 minutes of trying every possible position with my sleeping infant that just wouldn't burp, a horrifying thought came into my head, and that's where I will leave part of the story to myself, the part that I'm not quite ready to fully share. I couldn't believe what just came into my head, and what I felt like I could easily do. I began to sob. I put Jackson back in his crib, went back to bed, and quietly cried myself to sleep. I didn't tell anyone what happened, at least not yet.

The next two days were a blur. An attempt at me trying to keep up with life, but failing. I started to feel like I was starring at this infant like he was a stranger. Like I didn't know where he came from because if he had come from me, I would feel different. I think that is when my mom starting coming up more often to help with things like organizing the linen closet, tackling the loads of laundry etc. But it wasn't helping me as much emotionally as I was expecting it to, or maybe, hoping that it would. That Friday it all came out. It was three weeks to the day that we went into the hospital to start the induction.

I broke down that morning and probably scared my mom half to death. I told her about the thoughts that went through my head. I told her about the load of clean laundry of Jackson's clothes that had been sitting in a laundry basket for two days because although it was causing me complete anxiety to look at it, it was too big of a task to handle. There were too many, little tiny clothes. I had no problems folding our laundry, or Emma's laundry, but I couldn't face all of those newborn clothes. This was also about the time that Emma started acting out more. It really wasn't all that bad, she was just being a toddler, but to me, it was too much to handle. I felt like I was constantly yelling at her. I needed a break. My mom convinced me to call my doctor and that afternoon I found myself an emotional mess in the middle of his office. I was scared to admit everything, but with my mom there, I knew I could and I knew I wouldn't get any help if I didn't. Jackson was with us too, and it was like he knew that Mommy needed some time to talk to the doctor because he slept through the entire appointment. By the end of the discussion with my doctor, I had a prescription for an antidepressant and an appointment for therapy the next week.

That weekend was probably the toughest weekend of my life. It was like I couldn't face being at home. I needed to get out. I needed to get out of my head. I needed to get out of my house. I spent the entire weekend with Jackson at my parent's house. We picked up Emma and spent the day with both her and Jackson that Saturday, and then Wes came down to have dinner with us and then take Emma home to sleep in bed. During the days I felt okay, but like I was just passing through life, but not really involved. I was going through the motions of changing diapers, feeding bottles, but mentally I was somewhere else, doing whatever I could to not think about things. That night I had a major breakdown. Emma started acting up. She was hitting. She was screaming. I couldn't wait for her to go to bed. I couldn't wait for her to leave. I couldn't get Wes and Emma out of the house fast enough. I freaked. With both Wes and I in tears, he took Emma home and before they even could walk to the car, the guilt set in. Why in the world wouldn't I want to be around my Emma? What was wrong with me? Why couldn't I handle things like before? Why did I just want to be alone, when I felt so alone at the same time? Why didn't I want to be at home? When was I going to be able to go home? When would I feel normal again? Why couldn't I be the mom that I wanted to be? What kind of mom wants to be away from her kids so bad? Why was I failing at life?

Not 5 minutes after Wes and Emma left, Jackson started screaming. I couldn't get him to stop. He ate. He burped. We rocked. We walked. We changed diapers. You name it. He just wouldn't stop screaming. This was the first night that he really started with colic. On top of how I was already feeling, it was too much. I finally, after what seemed like an eternity, got him to sleep and I just broke in half. I handed Jackson off to my dad, and just cried in my mom's arms. I stayed at my parent's house with Jackson until Sunday afternoon and headed back home. Since then it's been a struggle. There have been good days, there have been bad days, there have been good days with bad parts, or even good days with horrible parts, but we are still here. Emma is as crazy as ever, Jackson is getting chunkier by the day, Wes is starting to understand more and more about what is going on and I am making it through each day, one day at a time. This is something that we will get through, even though there are nights where I curl up in a ball in my bed, with my pillow over my head trying not to hear the sound of Jackson screaming. We will get through this and I will become the mom that I want to be again.

Therapy has been helping a lot though. I am able now to identify a lot of my triggers and I am finding ways to deal with my anxiety. Its also been a process of giving my permission that it's okay to not be perfect. It's okay that I don't have that instant connection with Jackson because I now know why. We spent weeks worrying about him and thinking the worst when I was pregnant because of him measuring so small, and the cysts in his brain. I spent 9 months almost preparing for the worst and building a wall so that if something did happen, I wasn't attached. Day by day though, we are building that bond, and I know feel okay knowing that it will take some time. I had 9 months to bond with Emma before she was born, and I felt like I didn't have that with Jackson. But there is no rush...he isn't going anywhere.

Still Alive...

Believe it or not...we are actually still alive. :) Although, it may not seem like it from my lack of posting. One of these days I will get around to explaining and updating everyone on how the babies are doing (I also have lots of pictures to post as well).

For now though, it will just be a quick update to say that Jackson slept through the night for the past two nights!! Woo hoo!! Although we are still struggling with some Post Pardum Depression and Jackson's colic, there is at least a light at the end of the tunnel!

Oh, and you can't tell me that these two babies aren't related...

Jackson Douglas

Emma Kathryn
site design by designer blogs