Friday, May 27, 2011

Holland Poem

You might have read this poem before if you have a special/medical needs child or know anyone that does. It sums up our way of life perfectly and i think helps others to understand. We don't want pity, we don't want awards, we don't want recognition...we just want the best for our child/children. So without further ado, I give you Holland. :) It's a GREAT place to be!


Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Thursday, May 26, 2011


It wouldn't be a normal week in our house without a trip to ER would it? We were minutes away from going today, but thankfully nephrology called me on my cell phone just as I was about to pull into the ER and diverted us to their office.

Yesterday afternoon Stephen started throwing up his milk after each feeding. He's definitely spit up for me plenty of times before, but this was different. He was wreching so hard and it's just unusual for him to throw up more than once in a day. And then he threw up in the middle of the night while he was hooked up to his feeding pump. Strange. Then this morning after I nursed him, he was soaking wet. His g-tube had leaked a large amount of milk out the actual hole in his stomach.

So I called the pediatrician and she decided to page Stephen's g-tube doctor. While we waited for him to call back, Stephen vomited again. So I started packing up some of his things assuming Dr. Friehling (his pediatrician) would definitely send us to the ER. Unfortunately, Dr. Friehling never got a return call from Dr. Lee, Stephen's g-tube doctor, which I am beyond annoyed about. So off to the ER we went.

While we were on the way to the hospital, nephrology got word we were heading to the hospital and wanted to see him first. So we headed to see Dr. Fildes and for them to get a sample of his dialysis fluid just to make sure there was no infection. No infection and we were cleared by nephrology. Dr. Fildes suggested we head upstairs to the g-tube group so they could see him without going to the hospital as well. Unfortunately, they weren't as accommodating and told me they could fit Stephen in tomorrow. Not acceptable, especially considering none of their doctors have even seen him since he left the NICU. Not even when he was in the hospital for five days. Each time we've gone, we've only seen the nurse practitioner.

Luckily Dr. Fildes felt the same way I did and called them himself to make sure they saw us today. To make a long story short, the doctor finally saw us and has decided to send Stephen for an upper GI test tomorrow. That way we can rule out any serious GI issues and they can prescribe him some stronger reflux medicine. We also made it very clear that it was unacceptable for him to never see a doctor and thankfully, they agreed. At least they now know that Bill and I are extremely serious about getting Stephen the right care.

We are back home and Stephen seems to be doing much better with his feeds. Thank goodness! I was getting a little tired of getting thrown up on and changing his clothes every three hours. But we'll find out tomorrow for sure what the issue is.

Wednesday, May 25, 2011

Date Night, Away Night

So one of things that's been keeping me super busy the past week has been getting ready for my first trip away from Stephen. My best friend Anne, got married in Lancaster, PA this past Saturday and it took me about two weeks to get ready for two nights away from Stephen. Even though it was tough, there wasn't much that would have kept me from being there to watch her walk down the aisle. Oh and since I was the Matron of Honor, I had some serious responsibilities that giving the bride and groom a toast.

I think a lot of my friends have been wandering how I handled being away from Stephen. And I'd have to say, I passed that test with flying colors. I cried for about a minute when Bill left the house with Stephen Friday morning to take him to his Mom's house, but that was the extent of my sadness/worry. That was mostly because Stephen was in such good hands both Friday and Saturday night. Bill and his Mom held down the fort Friday night and two of Stephen's nurses from the NICU, Jess and Cindy, took care of Stephen Saturday night. And then Grandma Tish took over again Sunday until we got home. Stephen's Team did awesome!!! And it was because of them that Bill and I had a total BLAST Saturday night. It was so fun to spend a night without a worry, dancing the night away in our finest. Me in my bridesmaid gown and Bill in his tux. And let me just say, I think my husband was best look guy in the room!!!! Aside from the groom, of course! :)

Thank you guys!!! I owe you big time and hope I can return the favor some day.

Here's a picture of the gorgeous bride, two other beautiful bridesmaids, and myself.

Wednesday, May 18, 2011

New Pics of Stephen

I know I desperately need to update everyone on how Stephen is doing and what's happened in the past week, but I can't muster up the energy to type tonight. Sorry! So instead, here are some recent pictures. I'm sure you like these better than listening to me ramble on and on anyway :)

Photo shoot from today in our new outfit for chilly Summer nights

Stephen's first real bites of food. Yummy pears!

Helping Dad work

Stephen and Mommy on Mother's Day

Goofing around

Sunday, May 15, 2011


One of the questions I get the most from people is what am I going to do about work.  I haven't mentioned anything about work on the blog before now because I hadn't made an "official" decision until last week.  And although I know no one from work reads the blog, I didn't want to say something I shouldn't. 

Just to give you a little background, I work for a huge law firm in DC as an environmental regulatory specialist.  Basically I provide regulatory support to the attorneys and their clients at the firm who practice environmental law. I still feel a bit weird about talking about it on the blog, so I'd rather not mention the Firm's name.  I started working there in October 2009 and before that, I worked for an environmental consulting firm as an environmental auditor.  All along, even before I got pregnant, I always thought I would go back to working full-time after having a baby.  I really like working (most of the time), but more importantly, was proud of the accomplishments I had made in my profession.  Once we found out we were having a baby, Bill and I went and toured numerous day care facilities and we planned on interviewing a few nannies once Stephen was born.  Well, as you can guess, all of that changed when we found out about Stephen's disease.  But since we had no idea what was going to happen when he was born, I left things a bit open-ended with my employer about my leave, and they were okay with that.

Right around the end of February, I went into work to ask if I could return to work part-time and to tell them I was going to use all of my unpaid FMLA leave, which would give me until June 10th for maternity leave.  I thought when I came back to work I could work from home some of the time and work at the office some of the time.  I thought it would be a great compromise seeing as how the person filling in for me while I was on maternity leave is in Florida, and it was very difficult for my position to make the required billable hours.  About a month ago, I heard back from HR, and the answer was no.  They wanted someone full-time, in the office all the time. 

Unfortunately, due to Stephen's level of care, the number of doctor visits he has, and the unpredictability of his health (oh, and don't forget he'll be getting his transplant in Philadelphia which will require an immense amount of travel), coupled with the fact we have been denied skilled nursing care for him (he can not be in day care), I can't work full time. It would be impossible for me to work from 9 am to 6 pm everyday with his dialysis and everything else.  So last week, I submitted my official resignation letter to HR and cleaned out my office over the weekend.  May 31, 2011 will be my last day.

I'm happy that I'm going to be able to take care of Stephen and be there every time something goes wrong, but I can't help but be a little disappointed that I've "lost" my job.  I definitely hope to go back to working as soon as Stephen gets his kidney and is healthy, but I'm also nervous that I'll have lost a lot of my knowledge and skills and that no one will want to hire someone who has been out of the workforce for a few years in an occupation where things are changing all the time.  And of course it's also been a big adjustment losing my income.

My only hope is that I can maybe find a way that I can use some of my other skills such as writing or my new found skills in health care to both make a few dollars and keep my brain active outside of taking care of Stephen.  And who knows, maybe helping others with this disease will be my new life passion.  I certainly wouldn't mind that one bit!!

Saturday, May 7, 2011

Happy Mother's Day

Mother's Day takes on a whole new meaning for me this year. Not only is this my first Mother's Day (last year on Mother's Day I was actually pregnant, but didn't know it), but I came close to having nothing to celebrate this year. The past year has definitely been the hardest year of my life, but I have so much to be thankful for and so much to celebrate this Mother's Day. Mother's Day has always been a special day to celebrate Mom, but I truly understand this year just how special this day is for all mother's and I'm especially grateful for the Mother's in my life and so happy for all my friends that are also celebrating being Mom's this year.

I'm posting this now because I don't know if I'll get a chance to post it tomorrow, but I really wanted to honor my Mom, my Sister and Bill's Mom.

Mom - words can't describe how much your support, love, and help have meant to me; especially this year. You've unfortunately witnessed some of my worst times and have driven the two hours from York to be there to hold my hand or just give me hug. You've put up with me when I didn't even want to be around myself and understood when I just wanted to be alone. Thank you for cleaning my house, for bringing me groceries, and everything else you've done. You've shown me how to be a great Mom and I know I got through all of this because of how you and Dad raised me. I know we didn't always see eye-to-eye, but I've always had so much respect for you and I'm proud to say that we're not just mother and daughter, but also great friends. I love you, Mom!

Jess - So much of what I said about Mom is so true for you as well. Eventhough you aren't always physically by my side, you've been with me this past year every step of the way. You called me every single day when I was pregnant and dealing with heartache just to check in and tell me that you were thinking about me, and you were there by my side when I was in labor and so scared of what might happen that day. I know that you were just as scared as I was, but put on a big smile that day for my sake. You are the most amazing Mom to two beautiful girls and I have learned sooooo much from you. You're the best sister and friend a girl could ask for!! I wish that we lived closer to each other so I could see you more and hope that one day that wish might come true.

Tish - Thank you for raising such an awesome son! He's an amazing Dad and I owe all of that to you. And thank you for being a second Mom and a friend to me. You've done so much to help me over the past year whether it was bringing dinner or watching Mabel, I truly appreciate all of your help! As I now understand, Mother's and Son's have a special bond, so I thank you for sharing your bond with your son with me.

Thursday, May 5, 2011

Crazy Week

Sorry I haven't had a chance to update the blog with everything that's happened since the weekend. The one nice thing about the hospital was that I was able to catch a few minutes each day to catch up on the blog and email. And my sleep a bit.

We ended up being discharged from the hospital Monday evening with tons of antibiotics. They sent us home knowing that Stephen still had an infection, but that it wasn't nearly as bad as it had been. And I could continue his treatment of antibiotics via his g-tube and in his dialysis fluid. Lucky me, one more medicine and an extra five steps to set up his dialysis. But it's still much better than being stuck in the hospital!

Monday night was a nightmare. Stephen didn't sleep at all. And when I say at all, I mean not more than 30 or 40 minutes at a time. Which was so annoying because in the hospital he slept so great! I'm confirmed it's a combination of the light and sound and the soft, inclined mattress. So I've been trying all of those things, but I can't seem to replicate the hospital environment.

Being up all night Monday night though did allow me to see one thing; a hole in Stephen PD catheter. When I went in to hook up his feeding tube at midnight, I noticed his pj's were all wet on his leg. At first I thought maybe it was his catheter, but then figured it was just his feeding tube extension tube. But later that night around 3 am when it was even more wet, I knew something wasn't right, i changed his pj's thinking that if it was a hole, the new pj's would also be wet. So we changed him. But much to my surprise, the new pj's weren't wet. So maybe I'm just imagining things?

That day when I talked to Deb, his dialysis nurse, I mentioned this to her, but we both shrugged it off because he wasn't staying wet. But Tuesday night when I connected to dialysis and I watched the tubbing super closely and low and behold, there was a hole! We called the on-call doctor and told her and her suggestion was to just bring him in to the office in the morning and Deb would repair the catheter.

Deb ended up calling me the next morning and said, "well, I guess you know by now he needs to come in to have his catheter replaced."

"Nope! I was told you could repair it!" So she said to bring him into the office and she would do what she could, but there were no promises. So I quickly packed myself and Stephen an overnight bag just in case he was admitted for surgery. I didn't call Bill yet because I didn't want to worry him for nothing. So off we went to the nephrologists office.

Luckily, Deb was able to fix the hole. She cut off his catheter right above the hole and "installed" a new transfer set and saved us from a trip back to the hospital and to the OR. And luckily while we were there, we also got to see the g-tube nurse who gave Stephen a much smaller and more low profile g-tube button. That will hopefully help with some of the leaking and skin breakdown under the button. Now if I could just get rid of his horrendous diaper rash. The poor kiddo has such a raw butt from his nasty antibiotics.

Low and behold after trying a bunch of different pillows and blankets last night, Stephen pretty much slept through the night. Hallelujah!!!! I know you aren't supposed to have anything in the crib, but if a gel pillow (from the NICU) and a blanket due the trick, I'll take it. It's either that or he sleeps in his swing all night. And I'd much rather him have a little pillow and sleep in his crib than have him in his swing. The crib police are welcome to come arrest me anytime!

Here's to hoping the next few weeks are uneventful and we can actually resume a sort or "normal" life!

Monday, May 2, 2011


Surgery was canceled!!! YEAH!! In true Stevie-wonder fashion, the minute the doctors mentioned surgery, he started getting better. If you remember back to the NICU, they started talking about tracheotomy and his respiratory issues started getting better. The little guy knows how and when to pull through when it matters the most!

So after his cultures and everything came back on Saturday, the two nephrologists and the surgeon conferences and decided that they really didn't want to replace this catheter because it's working so great and always has. The worst thing that could happen would be that they would replace the catheter and then the new one wouldn't work and we would fall way behind on his dialysis and then basically have to start from scratch. So they're going to continue to treat the staph infection with antibiotics in his dialysis fluid at home and watch his cell counts via blood tests to make sure they completely kill all of the bacteria. The course of at-home antibiotics is three weeks. Then hopefully all of the staph infection will be gone.

The only questionable outstanding issues we still have are the bubbles or air in his catheter tubing and his g-tube. The bubbles are still a complete mystery to everyone. But since they don't seem to be interfering with his dialysis or hurting him, they're not going to do anything about it at this time. But his gastroenterologist needs to fix the g-tube issues ASAP! It's still leaking and it was the leaking that originally caused the rash which might have lead to his infection in the first place. They really need to get on the ball with his g-tube or they're going to have deal with this Momma when she's pissed. Not fun for the person on the other end of my anger. Although I can always get Bill involved and then they'll be really unhappy they didn't listen to me when I told them it wasn't working :)

Hopefully we will be discharged by 5 pm today and home snuggled in my own bed tonight for the first time in almost a week. Now just pray Stephen sleeps as well in his crib at home as he's been sleeping here at the hospital. I'll be rigging up his home crib to mimic the inclined crib here at the hospital for sure!

And I miss my other baby like crazy!! She's having an awesome time at Grandma's, but I'm sure she misses her Mommy, Daddy, and brother too.

Sunday, May 1, 2011

Bad News

Today (Saturday) was supposed to be our dischrage date...again, but alas, we are still in the hospital. And on top of that, we got really bad news today. Stephen needs surgery to replace his peritoneal dialysis (PD) catheter. The worst and most unexpected outcome from this bout with peritonitis.

This morning when we got up and all day, Stephen has been in a great mood smiling and playing and looks back to his normal self. So I was sure we were going home today. But once the final cultures came back from yesterday, it was clear that the infection is still going strong and the antibiotics aren't killing the bugs in his belly. Plus, his dialysis fluid is still cloudy. A sure sign that the infection is still around.

The nephrologists and dialysis nurse believe that the staph has settled into the plastic cuffs on the inside of his peritoneum. That's why the antibiotics aren't working. Plus we noticed today that there are bubbles inside his catheter tubing which means air is somehow getting into the catheter from the inside. It's a always a closed loop "system" so it doesn't make any sense how that has happened.

We have no idea when they're going to do the surgery, but I have told them that only Dr. Kim will perform surgery on Stephen. He was the surgeon who removed his kidneys and placed the first catheter, and we have complete confidence in him. We think he's brilliant and on top of that, not only is his name Stephen as well, we really like him.

So right now our stay is completely open ended but with any luck we will be home by the end of the week.