We're home!

Doctor has approved us for discharge. Hallelujah! He's doing great but still in a lot of pain. We think he'll be more comfy at home.

Clinton got his catheter out and can now have milk. Drs say he's doing awesome!

If a 2 yr old sleeps all day, then they're up all night :-\

Prayers are working! Clinton just woke up talking asking a million questions! We're now watching ratatouille. :-)

Clinton is still sleeping. He wakes up to cry, then back to sleep. We're taking turns laying with him and holding him. How i wish it were me instead!

We're in recovery, he's sleeping in rodney's arms.

Just got a call, surgery went well. They're stitching him up now. We'll get to see him in about an hour.

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Getting ready for tomorrow. Testing my mobile update feature!

Nakey Babies

Everyday I get the kids dressed. We get up. Make the beds. Eat breakfast. Brush teeth. AND GET DRESSED.

Yet everyday, I find myself with nakey babies. Somewhere between explosive diapers, "swimming" in the baby pool, leaky popsicles and a strong willed 2 year old, there is a loss of wardrobe...which ultimately results in a growing pile of laundry. I'm willing to bet Clinton usually goes through at least two outfits a day. This week I couldn't help but think my nakey babies were quite adorable. That's right...no collared shirts, no plaid shorts, no ruffles, no matching bow...and I found it to be adorable. So, I got the camera out and snapped a few shots of my kids doing what they do best...enjoying each others' company. Umh...melt my heart.

Heidi loves to be right by Clinton while he watches cartoons. She also seems to love them, but mostly she loves that Clinton will sit by her and chit chat with her.





Clinton is a stinker....there's just no denying that. He is a handful day in and day out. To make things worse, he's really funny...and this makes it difficult for me to discipline him....or for him to take me seriously, because I'm laughing. His new thing when he gets caught at something is he squints his eyes, lays his head to the side, and tells me, "Shhh. I seeping." (and he always signs "sleeping") I bust out laughing every time. The other day while I was changing Heidi's diaper, he climbed into her crib (completely nakey, no diaper). When I turned around and started my, "Clinton what are you do...?" He cut me off, "Shhh. I seeping." Ah, ha ha ha.



My sweet baby girl. Oh, I love this face. I kiss it at least a million times a day!


A rare photo of me. Proof that this mommy does exist.


From our nudist colony to yours,

How blue can you make me? How blue can I be?

I think those may be the words to a country song. Not really sure, it was just the first set of lyrics that popped into my head when I thought of "blue". Maybe Reba...

Things around here have been fairly close to normal. Clinton tries to be himself as much as possible, but has become increasingly tired and sometimes mean. We're giving the kidney credit for it all. If we're still dealing with mean in a few weeks, then we'll take responsibility for it and step up the discipline.

Discipline--ugh. It's exhausting and I feel guilty administering it because it just gives Clinton one more thing to cry about. So, I find myself taking it easy on him...but he is not reciprocating. Clinton is into anything and everything when he's feeling good...including markers. And blue markers are his favorite. And when he find them he goes into hiding and comes out like this...and then I laugh...and then he thinks it's funny... And, wow, I really need to get better at disciplining!



Heidi is still acting perfectly. She is so happy almost all the time and just loves to talk. And I mean LOVES to talk. People often think she is crying or fussing, but really she is just non-stop chatter. Just like her daddy... ;-) And doesn't she look beautiful in blue?



Seeing shades of blue,

CONGRATULATIONS!

Congrats, Chelsea and Brian! We are so excited for you!



Much love,

July 28th it is!!!

We finally got our call yesterday! Clinton will be having his surgery on Tuesday, July 28th. We were so excited to get him in so soon. The first time we called, the doctor was booked out until the end of October. Of course, Clinton's surgery couldn't wait that long, so the doctor had to reevaluate his schedule and get us a new date.

The first couple of days back home Clinton was still having a rough time. His catheter had left some lasting effects making it difficult for him to pee. He would hold it and hold it until he'd about made himself sick. We would have to run 3 or 4 baths a day just to force him to pee. So sad.

He's definitely feeling better now. He still won't let me cut off his hospital bracelet. He has spurts of himself which are usually followed by some quiet time. He's been watching lots of movies and napping incredibly well. I wish I could enjoy this rarely seen down time, but instead I start to worry about him when he gets so calm! As I type this he's running around the living room with a diaper box on his head.

He's also been eating well, which we're always excited to see. Below is a picture of yesterday's lunch. I've started buying the dinosaur shaped nuggets at SuperTarget. Even if he's not really hungry or in the mood to eat, I can always be guaranteed that he'll at least get a few bites because he always bites their heads off...as he makes squawking sounds. Some days he'll eat them all, some days just their heads and tails and some days just their heads. But I figure 3 or 4 bites of protein is better than no protein.


This is a video of Clinton having a little spurt of himself this week.


12 days to go,

Grateful & Guilty

After all the shock of Wednesday's events had settled, I was feeling pretty good about myself as a mother. Both the pediatrician and one of the urologists had commended me for discovering the mass in Clinton's side and bringing him to the doctor. Yes, I patted myself on the back a few times telling people what the doctors had told me...and even making a comment about it on my blog. But I'm over it...



...now, I'm feeling an overwhelming mix of two very distinct feelings--gratefulness and guilt.

After replaying the day's events in my head, I have an abundance of gratefulness to God. I'm not one for rushing to the doctor. When I notice something odd, I have a tendency to watch it and see how it progresses...or in many cases, how it corrects itself and goes away. As I mentioned in my previous post, I just had this overwhelming feeling we needed to get to the doctor. Seeing as this is completely out of character for me, I can't help but think (well, know) this was the hand of God moving me in the direction I needed to be going. And the timing of everything worked out perfectly.

By the time I called the doctor it was 1:00p and I told them I needed the next available appointment, 1:40p was the slot they offered....the exact amount of time I needed to get there, get the kids unloaded and into the stroller, and wheeled upstairs to the office. Clinton didn't throw up until we got there. If he had thrown up before I may have assumed all of his symptoms were the stomach bug and not taken him in. And by the time we were seen, sent for an ultrasound and x-rays, and returned to the pediatrician it was close to 5:00p. If I had waited any longer, we wouldn't have had time for all three stops and a diagnosis in one day. And did I mention the ultrasound people just happened to have a spot open at the time we needed to be seen? God is so good.

"God is our refuge and strength, and ever-present help in trouble." Psalms 46:1

Not only was the timing of the day perfect, but we are SO grateful we caught this as early as we did. Clinton still has quite a bit of functionality in his kidney at this point. Many times this can go undetected or misdiagnosed for so long that the kidney has little to no function by the time it is discovered. Our hope is Clinton's kidney will remain as functional as it is today and that hopefully he won't have any memories of this time...while our hearts and minds have been seared with some heart-wrenching memories.



While we continue to be ever so grateful to God, I find myself falling into moments of guilt. Don't worry, Mother and Heather have already lectured me about this--I know it's not my fault! But as a mother, you can't help yourself. Taking care of these kids is my life...and I take it very seriously.

After receiving our diagnosis and returning home, I began researching in order to learn more about what was going on inside Clinton's little body. There are a list of symptoms, each of which can present itself as something other than a UPJ obstruction or hydronephrosis. Unless you're specifically looking for it or know to put all those symptoms together, then it can easily be overlooked. Especially, when it's a two year old (or younger) who's experiencing these symptoms with little ability to communicate to you exactly what's going on.

Now I look back and realize how many times I missed the signs. Clinton was a great content-all-day, sleep-all-night baby. BUT he'd occasionally have a day where he cried all day and his tummy we would be like a rock--we'd take it as having a hard time pooping, since he was sometimes constipated. There would be nights he would cry for hours on end, no matter how much I rocked him or tried to feed him--I took it as something I had eaten that day that passed through to him. And there were the 10 "stomach bugs". Which we now know most of which were pressure in his abdomen from his kidney causing him to vomit. I thought it was odd that I could cuddle him and love on him so much while he was sick and only contract the virus once myself.

I just feel bad that he had to suffer for so long, but AGAIN I am so GRATEFUL that he will suffer no more once he has recovered from his surgery!

"The Lord gives strength to his people; the Lord blesses his people with peace." Psalms 29:11



Today (or possibly tomorrow) I will anxiously be awaiting a call from the doctor with our surgery date. We're just hoping for as soon as possible. I know the actual day of the surgery will be hard on all of us, but we are so looking forward to having this resolved.

For now I spend the days trying to read every whine and cry, wondering if his kidney's hurting him. I worry that something may go wrong before we get to the surgery. And I have a bag packed and ready in case we have to make another run to the ER (we've been given a list of symptoms that require us to head immediately to the ER).

But in the end, I find myself in a lot of conversations with God--asking for strength for me and Rodney, asking for healing for Clinton, asking for knowledge and wisdom for the surgeon, and trying very hard to give over my anxieties to Him. He is an amazing God, after all...

"Cast your cares on the Lord and he will sustain you; he will never let the righteous fall." Psamls 55:22



Clinton was so glad to be home after two days of poking and prodding. He has spurts of himself followed by episodes of exhaustion and discomfort. He refuses to let me cut his hospital bracelet off his ankle and he knows we're weak right now, so he asks for a cookie as often as he can remember. How do you say no to a little boy in pain?

Heidi is being her usual self--content and happy. She sleeps 10+ hours at night, naps well throughout the morning, and eats like a horse. She loves having Clinton right up in her face, which I guess is good since that's where he is half the time. And while Clinton gets to pick and choose when he shares with Heidi, she just has to always be ready to share with him...it appears his new favorite place to watch TV is from her exersaucer. "My cher, my cher."

Keep checking back with us for surgery updates. I'm expecting prayers from each and every one of you! I don't ask you readers for much, so I'm hoping you'll oblige! :-)

Forever grateful,

Hospitals Are Not Our Favorite

…yet here we are. I’m sitting here listening to the beep….beep….beep of Clinton’s IV wishing we were anywhere but here, but also thankful that we caught the problem and are, in fact, here.

Yesterday started no different than any other crummy day. Clinton woke up grabbing his belly telling me, “Ow.” This is normally how we start a day that contains one of our many episodes of the stomach virus, so I thought this day would be no different. However, Clinton didn’t throw up. He was lethargic, whiney but throw-up free.

In an effort to provide some comfort, I laid Clinton in my lap and rubbed his belly a bit. This often helps him with gas or even soothes an upset stomach. As I gave a few simple rubs I noticed a tightening in his left side, so I checked the right side. No tightening. That’s odd. Back to the left side with a little firm rub and squeeze. Did I just…? No. Check again. Yes, definitely something there. Something that feels like a golf ball. To make sure I wasn’t crazy, I checked a few more times. It was deep, not bulging, but definitely there.

I first called and left a message on the advice nurse voicemail and waited for a call back. After a few minutes, some kind of maternal adrenaline took over. A gut feeling told me we didn’t have time for a call back, we just needed to see a doctor. I called back and told them we were coming and we needed the first available appointment. They were happy to oblige.

We arrived at the doctor’s office with a completely lethargic and limp little boy. He wasn’t fighting the straps on his stroller. He wasn’t asking to get out. And he wasn’t dropping his feet below the footrest to push the stroller across the room while screaming at me. He wasn’t Clinton at all.

After about 30 seconds of waiting, he threw up….big. We were seen immediately. Looking back, I’m glad he didn’t throw up at home or I may have just assumed we were on our 11th stomach bug. Now we’re wondering how many stomach bugs weren’t even stomach bugs, but flare ups.

The doctor examined Clinton, which is usually a fight. This day it was just a matter of moving his dead-weight limbs around. After all the routine checks, the doctor began to examine the abdomen. I was nervous he wasn’t going to feel the lump and that I was going to be sent home wondering what it was that I knew I had felt.

“Well, do you feel it?” “Yep, there’s definitely something there. I want to go ahead and send you for an ultrasound down the street. It could just be a stool, but we need to check.”

After a little conversation and some direction, I wheeled the kids to the elevator to head out for an ultrasound. Trying to imagine what our first impression would look like if I took Clinton in with nothing but a diaper and socks on, I was mentally figuring out how to get him some vomit-free clothes. As we walked to the car, I saw a beautiful little miracle--the consignment store that sits directly below the doctor’s office. Hallelujah!

With a new pair of shorts and a polo, Clinton was a champ during his ultrasound. He watched as the tech took pictures of his belly and he found the screen to be very interesting. The chest x-ray did not go as well. There was lots of screaming and convulsing as me and a tech held him in place. Not awesome.

I saw some things on the ultrasound that made me nervous. The left side had one massive and three smaller black circles. The right side had nothing of the sort. It was just a perfectly white, much smaller oval.

As I sat and waited I tried to read the face of every doctor and tech that passed, wondering if they had seen Clinton’s ultrasound. No one in the office smiled at me. I kept telling myself they just weren’t friendly, but I kept thinking maybe they knew our fate. “Here are your x-rays and your ultrasound pictures. Now make sure you go straight back to Dr. White’s office. Okay?” Yep, there’s something wrong.

As soon as I walked back in, the receptionist saw me, picked up the phone, “There here.”, and we were immediately ushered back, all with somber faces.

I waited for the doctor as both kids slept in the stroller. I tried to distract myself with an Elmo book, with reassuring thoughts that everything would be okay, and prayer.

Dr. White returned. He looked serious. I felt sick.

“It’s not anything devastating like cancer, but it’s serious.” I sat and listened to words like dissention, severe hydronephrosis, UPJ obstruction…and other medical words that didn’t hit me nearly as hard as what I caught with my eye. The paper he held read “Must be admitted to the hospital immediately”. I was choking on tears, trying to be strong, trying to hold myself together in order to hear all the information and be able to ask appropriate questions.

So, what we’re looking at is probably a UPJ obstruction. Rodney and I both have a sister who was born with this. Heidi will also be tested for this soon. The obstruction has caused the severe hydronephrosis, water on the kidney. This is why he can’t hold anything down, too much pressure in his abdomen.

“I want you to know, it’s not just any mother that would notice that and bring their child in for it. I want to commend you for being so aware and astute. I can’t think of another mother in my practice that has ever caught this on her own. It’s good to catch these things early.” If ever there were a time to feel good about the job you’re doing as a mother, during a medical emergency may be one of the best.

After visiting with my pediatrician and the pediatrician who would be on call at the hospital, we headed out to the car to make phone calls and the lonely, scary drive to the Children’s Hospital.

First call, Rodney. “I have some bad news. I took Clinton to the doctor today. He’s had an ultrasound. It’s his kidney. We’re going straight to the hospital. You need to come home.” With five hours of highway between him and his son, Rodney packed up and left without a second thought.

Second call, Mom & Dad. “We’re on our way to the hospital. It’s the same thing Chelsea had.” “Do we need to catch the next flight?” “Not yet, but I’ll let you know when we know more.” It’s so amazing to have parents who will drop anything and everything to be at your side when you need them.

Third call, Heather. “I have to take Clinton to the hospital. I know you’re family’s here…” “No, no, no. Let me grab a pen. Okay, tell me what you need me to get for you and I’ll have it there.” Friends like these are priceless. If you have one, don’t let them go.

More calls to Rodney’s family. More calls back to Rodney and Mom & Dad. Anything to not sit in the quiet with my own thoughts.

We arrived at the hospital and were ushered back to an Urgent Care room immediately. Things were fine until they needed to put in the IV. Not cool. Three tries, three veins blown. One child completely hysterical and inconsolable. A 20 minute break and try #4. It takes, but not quickly. Lots of screaming and tears, and one ragged mommy holding him down with the help of three nurses. Once it was in, he calmed down, but he was miraculously cured from the IV drama when his daddy’s face appeared in the door around 10:00pm. Then he wanted to show off his trains they brought him and sit in his daddy’s lap.

We’re now in an observation room, it’s about 9:00am. We had a long night of crying and screaming for milk. After three hours of crying, they let him have two sips of water and some pain meds. After a while the pain meds mellowed him out. About the time he was sleepy, he kept raising up his arm and saying, “Ow.” This “ow” was from an infiltrated IV that had to be pulled at 4:30 this morning and new one put in on the other side in his hand. He was so weak he couldn’t fight us like he did last night, but he continued the screaming.

He ‘s just woken up and we’re trying liquids. We weren’t allowed them all night with the possibility of surgery today looming over us. The urologist pretty much ruled out surgery today, but we’ll be doing quite a bit of testing to determine exactly when the surgery will be.

Heidi has been a trooper through it all. Nana came last night and held her while we waited for Daddy. She slept in a hospital pack-n-play beside me last night. And she’s been a happy baby…as she usually is.



We look a bit like a circus. They wheeled in an extra cot since Rodney and I were both staying, so there’s literally three beds and a pack-n-play lined up from wall to wall across our room along with Rodney’s suitcase from traveling and all the bags of necessities Heather and her sister, Annie, brought me from home.



We spoke with the urologists a few moments ago and Clinton will undergo quite a bit of testing today. This will involve a catheter. We’re not excited, but we know it’s necessary.

We are so thankful that the issues we are facing are treatable. They are not life threatening with treatment. They will, however, require surgery. I cannot even begin to imagine what it must be like to have a child facing a terminal illness, or even chronic. Watching your child suffer is gut wrenching. We know our issues will be resolved within a short amount of time, but we are still heart broken for our little boy.

There is nothing that cuts a mother’s heart like the tears of a child. And a father’s insides are turned inside out with painful shrieks of child.

I am very thankful at this time for my own mother. Who, twenty years ago, went through this same thing with her own child. A bond that will bring us even closer together, no doubt. The true understanding of what you’re going through is priceless, and I’m glad it’s my mother offering this understanding.

***********


I wrote the above this morning from my recliner-bed. It’s now about 6:30pm. We’re home and completely exhausted. As expected, the catheter was awful. I was nervous about it hours before, and every time I looked at my very unexpecting son, my heart just broke for him. He had no idea what was coming.

I fought a painful lump in my throat during the entire event, and even shed a few tears. Clinton shed thousands of tears and filled the hospital hallways with screams and shrieks. He then had about 2 hours worth of testing in which the catheter had to stay in. For one test he was injected with nuclear medicine to see how much functionality was in his kidneys. While he has full kidney function, his left kidney is only performing about 30% of it. The second test was checking his bladder by injecting a contrast and watching it function.

The test revealed he does, in fact, have a UPJ obstruction which has caused the severe Hydronephrosis. Clinton will undergo surgery in the next six weeks. We’ll be calling in the morning to get the first available appointment.

I’m still pretty calm about the surgery because I’m far enough away from it to see it as an overall and absolute solution. My feelings and emotions may change as we get closer.

We greatly appreciate any prayers you can lift up for our little boy and his precious little body. And don’t forget me and Rodney, we need lots of strength in order to comfort Clinton through this process.

Looking forward to healthier days,

Who's that in the exersaucer?

Little Heidi is still little, but she's doing "big" girl things. Her latest milestone has been mastering the exersaucer. We started last week with a few minutes here and there, but this morning she sat in it for a full 30 minutes.

Clinton loves to sit on the floor and visit with Heidi while she sits in her new seat. He also like to grab the edge and run in circles spinning the exersaucer...which Heidi seems to love, too!

Below are a few pics of our latest activity.

Can you guess who that is under the big red bow??


Checking out the dragon.


Loving her new toys!


Ok, so there may be a little confusion over whose chair this really his. Clinton says, "My chaiw, my chaiw" a lot...to anybody...sitting anywhere...so things are no different with Heidi and her new chair. I had just gotten the exersaucer out of the attic and went to get something to clean it off with and came back to find this.


He's gotten better, but occasionally (when he's in need of attention) he still tries to climb in...but for the most part he knows it's not for him. In fact, he now walks up to it pointing saying, "Hi-hee's" (Heidi's).


Teaching sharing and caring,