In Honor of Sticky Bean

Wow, I can't believe it's been a week since I last posted. Where have my days gone?!?! Stephen has basically done a 180 degrees since last week. Last Thursday he had his 6 month checkup at the pediatricians office and while we were there, he had a major meltdown. Thankfully the pediatrician saw the whole thing, so my concerns were definitely validated. She didn't think his meltdown was caused by tooth pain, because it took him so long to calm down and his scream was just too crazy. So she conferenced with the rest of Stephen's docs and ran some tests and sent us on our way.

Strangely enough though, he turned the corner that night and has been so pleasant since last week. We had a fantastic weekend visiting friends on Friday and Saturday night and then had my sister and her family down from PA on Sunday for a BBQ. My nieces (5 1/2 and 2 1/2 years old) got to meet Stephen for the first time! They've been dying to see the baby and Stephen did so great letting my oldest niece hold him. Stephen's known as Baby Stephen in their house and I'm told now belongs to my oldest niece. Too cute!!













But......(you knew it was coming), Stephen still isn't sleeping. We started swaddling him again to see if that would help, and it did for a night or two, but now isn't working. And the thing that always got him to sleep in the past; the swing, isn't helping either. Since he's been napping wonderfully in his crib, I'm thinking that maybe it's the dialysis that's bothering him. Maybe he feels the fluid going in and out more so than he did before because so much fluid was being "lost" due to his hernias? Who knows. But the whole sleep thing is so frustrating because he's so great during the day. He's so interactive right now, starting to take some solid foods and liquids by mouth, and smiling at and mimicking people all the time. If he'd just sleep, I would say he's the perfect little baby! He's just so darn adorable right now!!

On a sad note though, since I blogged last, we (I say "we" as in the kidney support community) lost two kidney babies. One little guy who was 18 months old, passed away during surgery. The other little guy was only one day old. It's incredibly heart breaking and scary for us when this happens. I have been emailing with the Mom of the tiny little baby for months and she, like a few others, have been following Stephen's journey. I'm so shocked that her baby didn't make it. I know I shouldn't be, because I know the odds are stacked so heavily against our babies, but I really thought, without a doubt, her little guy was going to beat the odds. Especially since she had some, albeit very little, amniotic fluid left. Her tragedy truly makes me realize what a miracle Stephen really is and to not take any second for granted because I could have been in her shoes so many times. I know her little guy was placed on this Earth for reason, but that doesn't help ease the pain. God bless you Lauren, your husband, and little Sticky Bean. You fought so hard for him and did everything you could have done to give him the best chance possible. He was and is such a fighter and an inspiration to all the kidney kids! xoxoxoxox

No Sleep

Sorry I haven't updated since we got home from the hospital last week. It's been an extremely long week of no sleep, lots of crying and wondering why all of a sudden Stephen is so upset. My best guess, and the nephrologist's too is that maybe Stephen's teething. You can't feel any teeth yet, but yesterday he had a low grade fever, some diarrhea, and had been going to town on every paci he can get his hands on. So I'm giving him a little bit of Tylenol twice a day (can't give him much because of his liver issues), but even that isn't working. Neither are the plethora of teething toys a I bought or the cold washcloths. Its so bad that not even the swing is getting him to sleep at night. Any thoughts/suggestions would be much appreciated!!! Thankfully we see the pediatrician today too. I'm hoping she'll have an idea of what we can do too.

We also had a snafu on Sunday night when Stephen's cycler (his dialysis machine) died. Thankfully they didn't want us to do manual dialysis, which would have meant we would have had to drain and fill him every hour throughout the night, but instead, let us skip one night. I thought it would great because if Stephen didn't sleep, I could just bring him into bed with us and snuggle, but alas, that didn't work either.

Luckily the weather is beautiful today so we walked down to Shirlington (our local spot with cafes, bars, restaurants, shops, theaters, and the grocery store.... I love our neighborhood!) for coffee and breakfast and Stephen is having a great time sitting in his stroller playing. And the little French store was having a sale for Bastille Day, so we got a new little monkey blankie which he seems to really love. Right now he's got his elephant wabanub and his monkey blankie shoved in his face :) If only he could talk and then I could just bribe him to sleep!!! Or I guess better yet, tell Mommy what hurts.

Discharged

WE ARE HOME!!!!!!!

This was out longest outpatient admission yet and hopefully will be the last before Stephen's transplant! Stephen's been snoozing in his swing since we got home and I think is loving being home. I've tried waking him up a few times, but it seems like the little guy is just plain exhausted.

Now we just need to go pick up our little girl, Mabel, from Grandma's house. Hopefully she'll be just as excited to get home as we were!

Still Here

Well as you might have guessed, we are still in the hospital. Bill is back at work and I'm back to spending the day standing at Stephen's crib and taking short breaks to read and check email out in the play yard outside Stephen's room. He's doing great, but has had trouble tolerating his feeds (he's been throwing everything up), so that's why we are still in the hospital. He really hadn't had anything to eat since last Wednesday until last night when they started him on some pedialite at 5 cc's an hour. That's basically a spit wad of fluid. He did well with that so they switched him over to some formula today at 10 cc's an hour and will slowly go up from there. They can't send him home until we know he can eat well and tolerate his tube feedings (26 cc's an hour) so he doesn't become dehydrated and then send his electrolytes and blood pressure out of whack.

I'll be honest, I'm getting really tired of being here. I just want to take Stephen home and have things return to "normal." It's been a bit harder being here this time because I know everyone is outside enjoying their holiday and having fun with friends and going to the beach. It makes you realize how not normal our life really is when you see everyone else having a normal life. Facebook has pretty much been my downfall today. I log in a lot because I participate in a support group for moms of kids with end stage renal disease, but I should just go on for that and avoid the rest of it when I'm feeling sorry for myself.

But Stephen had a good day today so far, so I have to be happy about that. He did some physical therapy, had a visit with Tuco, a Bijon therapy dog, and spent a lot of time sitting up and out of bed. Plus he has a great nurse today that's been showering him with lots of love. And as soon as a bed opens up in the step-down unit, we can get out of ICU!

Happy Birthday Stephen

Dear Stephen

Today you are 6 months old!! You have become such a little man with the biggest personalty to boot! Everyone who crosses your path instantly falls in love with you and thinks you are one amazing little guy!! Your journey continues to touch people's hearts and your strength and courage inspires people to live their lives to fullest. I am a bit saddened that you are spending this milestone in the hospital, but I have to remind myself that we are so blessed to be able to hold you, play with you, and watch you grow, even if it is in the hospital.

Your favorite things right now are Geoffrey, your giraffe pacifier, your crib mobile, your butterfly, owl, and cowl, and your green ball (courtesy of the hospital, although I don't think they know it). And we can't forget your swing. You still adore your swing and love taking long naps in it. You're still not sure of your jumparoo, but you're starting to like it more and more. You still hate tummy time, but you're getting much better at it and are starting to roll. I'm sorry to say that Dad and I still swaddle you tight at night, because you're a very restless sleeper, but hopefully you'll grow out of that soon. Unfortunately, you sleep the best when at the hospital. You LOVE your craftmatic adjustable crib with a soft mattress that resides only at the hospital. Sorry kiddo, but my attempt at recreating your hospital crib at home has miserably failed.

Dad and I love you more than life itself and can't wait to see what the next six months holds in store for you. I know it will be lots of fun things like meeting your cousins for the first time, going to Mimi and Poppy's for the first time, and going to the beach for the first time. I can't promise there won't be any more hospital stays, but I can promise that your Dad and I will do everything and anything to keep you happy and healthy so we can spend every day and night at home.

I love you love bug!! Happy Birthday!!!!! And 4th of July!

XOXO
Mommy

Brady's Smile

Stephen received the nicest gift yesterday; a warm, comfy fleece blanket to keep him warm and cozy in his chilly ICU room. And it's adorable to boot!








The blanket was a gift from an organization called Brady's Smile. It came with a little note that says,

"This fleece blanket was homemade with love especially for you by one of our volunteers. We hope that you find it warm and snuggly, and that it provides comfort to you over the years and especially during your stay. Our thoughts are with you. Your friends at Brady's Smile."

And the ribbon tied around the blanket says, "Sweet Dreams, Stay Strong!"

I was grateful for the gift and had never heard of this organization so looked it up online and was touched by this family's story and the organization they have created to help other sick children after their little boy lost his battle. They provide so many sick kiddos with blankets, soothing music, care packages, and meals at hospitals in 7 states. Seven states!! That's so amazing!!

I'd love if you would take a few minutes and check out their website :

www.bradyssmile.org

I tell myself all the time that I want to give back to the people that have helped Stephen, but I really want to volunteer for Brady's Smile. My goal is to host my own blanket party so we can give other kiddos a blanket to snuggle with and keep them warm in this cold, scary place. I'll definitely keep you all posted about Brady's Smile and how we're able to help.

Stephen is doing great today and finally was able to get something to eat this afternoon. More importantly, I finally got to hold him!! I think the little guy was just begging to picked up by Mommy and Daddy. But we are going to be here in the PICU for much longer than we thought. They are very very slowly increasing his dialysis and it's going to be awhile until we get to 100 cc's of fluid. Best case, we think we'll be out of ICU by Tuesday. But you never know...Stevie Wonder likes to surprise us!

Today's Update

Today is so reminiscent of the two months we spent in the NICU it's like crazy deja' vu! Being in an ICU setting, back on manual dialysis, and basically just sitting next to his bed feeling totally helpless. Stephen is in a nice room, but it's small, has no bathroom, one chair, and is so cold I'm in jeans, socks, a sweatshirt and downing hot coffee right now. We didn't stay with him last night because not only was he totally wiped out from surgery that I didn't think he would wake up and realize I wasn't there, but since he's on manual dialysis around the clock, the nurse is in here every 45 minutes to drain him and fill him. Plus, he's hypotensive again (his blood pressure is low), so they're in here checking his blood press every hour. It was so nice to actually sleep through the night, but I felt guilty as hell leaving him and then felt terrible this morning when I didn't get back to his room until 11 am. Me racing around the beltway and flying through the parking garage and hustling through the hospital up to his room was also so reminiscent of our NICU stay. I absolutely HATE not being here in the early morning when the doctors do rounds! But his nurse today is so great and waited for me to get there so I could help give him a bath which was so nice.

I was able to just catch the doctor and they're going to run some tests to check out his adrenal and thyroid glands to see if maybe they aren't working properly and causing his low blood pressures. The nurse just came in to draw his blood for the test and was able to use his new Mediport. She drew out about 3 cc's of blood and Stephen didn't even know it. It was so awesome to watch and know that we made the right decision to have the surgery; 110%!

But it looks like we're going to be here in the PICU longer than we thought. Stephen's only getting 50 ml's of dialysis fluid when he dwells and he has to be up to 100 before we can get him back on the cycler. Plus, Dr. Kim doesn't want him having anything to eat, including water, until 48 hours after surgery. Which means he hasn't eaten since 3 am yesterday morning. I don't think he's bothered by not eating, but his poor little throat is so dry and scratchy from the breathing tube yesterday and he's not allowed any water yet. His little cry is so sad! But hopefully he'll take a long nap soon and wake up feeling better and more relaxed.