Friday, April 29, 2011

More pics

Here are some more pics of my love bug chomping away on his fist. We are trying to get him to learn to suck his thumb so he's not so dependent on his pacifier, but he has trouble opening up his hand to release his thumb. But it sure is funny watching him try to shove his entire first in his mouth!!

Hospital update

So as you all know, we've been in the hospital since Wednesday. We spent Wednesday night in the PICU and were moved last night into the Intermediate Care Unit; the place most kids go after the PICU, but before they are discharged. It was a bit of a debacle (I'll explain at later date), but we are all settled in now. Originally our stay was going to be short lived, but now is kind of open ended. They started treating his infection right away which was great and thought they we could continue antibiotics at home, but when the cultures and cell counts came back late yesterday and this morning, it became clear that his infection is a lot worse than the doctors originally thought. Plus his immune system is weak again and his blood pressures were low. So we might be here through the weekend.

What we do know is that Stephen got a type of staph infection in his peritoneum. Possibly via his PD catheter or through the catheter site on his skin from his rash. They're not really sure. But based on the fact that his white blood cell went up just from yesterday, the original course of antibiotics isn't doing the job. So now they're giving him IV antibiotics and directly into his belly in the dialysis fluid. The pain concern is that the "bugs" have stuck to the catheter cuffs inside the wall of his abdomen and that we'll leave the hospital before it's all gone and be back again next week. And we certainly don't want that!

Last night they also tried to give him an IV IGG drip. He received one in the NICU back in February when his immune system was pretty weak. This past months, his labs showed that his system had improved so he didn't it. But they checked his IGG yesterday and it was low again. So last night they started the IV and it was to run for 8 hours. But an hour in, his blood pressure started to drop so they gave him some saline to bring it back up. But it didn't really work and he only got about half of the course. And we didn't get him hooked up to his dialysis until after 1 am.

Today they are running him on continual dialysis now until tomorrow morning around 8 am. Which is kind of crazy, but also good because I'm responsible for setting up his dialysis for him while he's in the hospital. Pretty crazy, huh? They don't really have any kids, let alone infants, on peritoneal dialysis, so the nurses aren't comfortable or know how to do it. Being the weird person I am, I did ask them though if something happened to me, how would they connect him? And they do have a back-up for that thank goodness.

So that's where we are now. I'm staying with Stephen in the hospital pretty much around the clock and Bill comes and goes when he can in between work and running home for clean clothes. So you can imagine we are wearing ourselves pretty thin. But I feel better today than I did a few days ago when we were at home and I knew something wasn't right, but didn't know what. And as usual, everyone here at the hospital has been so great.

Here are some pictures we took today with our cell phones. Stephen is looking great now, it's just his poor little insides that aren't doing so great.

Sorry can't get the picture vertical.

Wednesday, April 27, 2011


How things changed in the matter of minutes!! A minute after I posted this afternoon, I went in to check on Stephen and noticed he was super hot and sweaty. I instantly took his temperature and would you know it, he had a 101 degree fever. The pediatrician told me to get him to the ER, so that's where we are now.

Turns out, my intuition was right; Stephen has a very nasty case of peritonitis. An infection of the peritoneum. They pulled off some fluid out of his belly (the cycler leaves 60 ml's in his belly during the day) and it was milky yellow. It's supposed to be completely clear. So we are being admitted tonight to the pediatric intensive care unit (PICU). Hopefully our stay will be short lived, but who knows.

No Good News Today

Sorry nothing good and or fun to report...again. Stephen's been off his game since Sunday and it all came to a head last night and today. Last week I think I mentioned that he started getting a rash on his abdomen up near his g-tube site. Over the weekend it continued to get worse and Sunday morning it was a definite full-blown rash. He did great through church, but then pretty much cried the rest of the day and started refusing to eat his whole bottle. Then Sunday night, I noticed there was fluid leaking from his g-site.

I took him in to see the docs Monday and got some topical and oral prescriptions for the rash which appeared to be a yeast infection. Not good. If it gets into his catheter, we'd be in BIG trouble and admitted to the hospital, so i needed to nip that in the butt fast. They also replaced his g-tube and have ordered a new one that will hopefully be a bit more kind to his little belly and his skin.

Yesterday I took him to the hospital for labs, which was a gigantic FAIL! They spent an hour sticking him with needles and barely got any blood. At one point, I had to just say enough is enough and we left. And I basically had a mental breakdown. Watching your baby get poked and jabbed over and over again just sent me over the edge.

Then last night, similar to the few previous nights, Stephen didn't sleep at all. He slept from about 10:30 pm until 1:30 am, but then was up every 30-40 minutes screaming. Not crying but screaming. I couldn't even console him by nursing him. And then today while we were at our nephrology appointment, he cried and wined and whimpered the whole time. Even in the car. And his rash is getting worse and so is his g-tube site. We got some stronger anti-fungal medicine which should hopefully help in the next 48 hours.

And the tell-tale sign that I know he's really sick....he's taking a nap in his crib as we speak. I think in the almost two months since he's been home, he's napped in his crib maybe three times. This week has definitely been pretty rock-bottom for us. I just hope that things will start improving soon and he'll start sleeping because Bill and I are definitely running on empty.

Tuesday, April 26, 2011

Stupidest Comment EVER!

You are not going to believe it when I tell you this, but I seriously had a medical doctor last Thursday tell me I should have a second child (who would hopefully have Stephen's blood type) so Stephen would be assured to receive a kidney. No freaking joke.

I'll set the scene for you so you can have a better understanding of what went down. Last Thursday I had a little minor surgery to remove some tissue from my leg. I had a mole removed back in July that turned out to have some questionable skin cells, so they wanted to remove some more tissue to make sure they got everything out. Well, I put it off a little bit and was supposed to have it done in October; the very same week we received Stephen's diagnosis. So I canceled it and kept putting it off until finally I had to just get it over and done with.

So as I'm laying on the table, the doctor of course says, "wow, it's been a long time since you were here last."

I didn't want to go into the whole story, but instead just tell him, "Yes I know. I was pregnant at the time..." as to which he says, "congratulations."

So as he starts shooting up my leg with numbing stuff, I reply, "Well thank you. The week I was supposed to have this done, I found out that I had no amniotic fluid and my baby was really sick. He has a rare kidney disease and now has no kidneys."

"Oh, I'm really sorry. So will he get a transplant? Will he get on a list?"

"Yep he will hopefully get a new kidney in a year or two, but unfortunately neither my husband or myself are his blood type, so yes, he will get on the list."

And just as he starts to cut into my leg (sorry if that's TMI), he says, "well you should just have a second child."

At first I'm thinking, what the heck is he talking about. There's is no way I'm having a second baby when I already have a sick one at home. But then he goes on to explain how the second kid could give the first one a kidney. Like the whole purpose of having a second child would be to "harvest" a kidney for Stephen.

First, I'm thinking what the hell! Then I'm thinking how morally and ethically wrong is that!?!? And this is coming out of a doctor's mouth! And I can't really tell him exactly what I'm thinking because the guy is in the middle of cutting up my leg and I'd really like him to stitch me up good and straight. Man, I just could not believe what he said. And still can't. I don't know, maybe I'm overreacting or took it the wrong way, but I just feel that what he said was so inappropriate.

Unfortunately, I didn't give him a piece of my mind, but instead just said, "there was actually a movie made about that exact situation called My Sister's Keeper." And left it at that.

By the way, don't even think about watching that movie unless you're prepared to cry for two hours straight!

Sunday, April 24, 2011

Hoppy Easter!

I hope everyone had a very lovely Easter and spent some time outside enjoying the beautiful weather. Happy Easter from our family to yours!

Wednesday, April 20, 2011

Bad Deja Vu

Today I took Stephen for a liver and spleen ultrasound, which I thought was just a follow-up to his labs from last week to check to make sure everything is ok with his liver.  We have known all along that often times children with ARPKD also have some liver issues.  And from day one in the NICU, I had been asking his doctors about it.  But every response I've gotten has been favorable; that there's nothing to be concerned about regarding his liver.  And after last week's nephrology appointment where I was told his labs were good, I didn't think there was anything to worry about either.  But apparently I was wrong.

Sitting in that little ultrasound room watching the tech scan Stephen's abdomen was like a horrid case of deja vu.  We have been through so many heart breaking ultrasounds when I was pregnant to know the signs when something isn't quite right.  First, they start to take lots and lots of pictures of the same thing.  Then the tech conferences with the doctor, and then the doctor herself comes in to take a better look.  Once the doctor came in the room and started looking at how blood (I think) was flowing through the liver, I knew instantly something wasn't right.

Apparently, the order on the ultrasound was to look specifically for signs of Caroli's disease.  All I know is that Caroli's affects the bile ducts of the liver.  There's stuff all over the Internet indicating that Caroli's specifically targets those inflicted with ARPKD and is another recessive disease.  Lucky us.  Right now I don't know anything more than that. I don't know how severe Stephen's case is, I don't if we'll need to do something to treat it, and I don't know how it will affect Stephen.  I did call the pediatrician and she instantly called me back and said she would call the radiologist herself and get some more information. I'm so thankful to have such an awesome pediatrician who is doing such an amazing job and keeping all of Stephen's doctors connected.  She's going to speak with the nephrologists and Stephen's GI doctor to make sure everyone is on the same page and that all the important players are aware of this. 

But I guess at least this new development isn't something that has totally blind-sided us or the doctors.  We've been aware of the potential for a liver issue, but I honestly thought that since no one had really said anything, that we were in the clear.  Hopefully this will turn out to be something we'll just need to watch and he won't actually need a liver transplant down the road.

Monday, April 18, 2011

Pump Him Up

Last week at our (now) biweekly nephrology appointment, we learned that our little guy, is in fact, very little. He's pretty low on all the growth charts, so we need to work on plumping him up and getting him to grow. We thought that maybe the pediatrician's calculations were wrong back in March when they told us he was below the 15th percentile in height and weight. And then when I took him last week, he was up to the 40th percentile. But a few days later at the nephrologist's office, they calculated him around the 20th percentile. Which is fine if you're a healthy baby, but for Stephen, weight and height are so important. Actually having a long torso is super important so that they will be able to fit an adult kidney in him. We've been thinking this whole time that he was a big boy because he was pretty big at birth (8 lbs. 6 oz.) and he's got such chubby little cheeks that he looks bigger than he really is. Luckily, he has been growing longer, so we don't need to start the growth hormones just yet, but we need to increase his caloric intake. So we are finally graduating from the little 2oz bottles and heading up in the world to the next size. And I have increased his night time feeds by a few cc's per hour. The only downside is I need to now keep up with the increase myself! Between preparing his bottles, cleaning them, prepping his feeding pump, and nursing Mr. Stephen, there never seems to be enough time in the day to pump. I just keep telling myself that I'm doing the best I can, but seeing those damn posters at the pediatricians office about how "breast is best" is so annoying!!

We have a busy week coming up this week. His dialysis supplies arrived today, we have a pulminologist appointment tomorrow, a liver/spleen ultrasound Wednesday, a visit from the County Medicaid people Thursday morning, I actually have a small surgical procedure Thursday that I've been putting off since October (I was supposed to have it done the week after we found out about Stephen's kidneys), and back to the hospital for labs on Friday. So much to do, so little time! Oh, and Stephen's first Easter on Sunday! So exciting!!

Monday, April 11, 2011

Recent Pictures

As requested, here are some recent pics of Mr. Stephen. Enjoy!!

Losing Sleep

It's 3:40 am and I'm awake and pissed. I've been up off and on for the past few hours with Stephen, which is typical, but now I can't go back to sleep because my mind is on overdrive. We received a letter this weekend from the State Department of Health Services that we were officially denied the Med Tech waiver for Stephen. Meaning that we now won't get the private duty nursing that we were told we qualified for and would receive. We were denied because the State determined that my private health insurance will pay for (part of) private duty nursing, so Medicaid will not. Which makes sense. I can't fault them for that. But just figuring this out now so late in the game is why I'm so frustrated.

Months ago when I started the paperwork process, the NICU staff determined my insurance would only pay for nursing visits, not private duty nursing, so that's why we started this long process of getting the waiver. And when I say long, I mean I completed the application back in February. Then we went on this emotional roller coaster ride of are we going to get help or aren't we. Because the process takes so long the only thing I got when we came home was the nursing visits, paid for by my health insurance; but they were pretty much useless to us. There isn't anything a nurse can really do for Stephen in the 15 minutes they were here. Then when I found out we were going to get nursing care, I labored over whether not I wanted someone in my house overnight or during the day or even at all (since I've been doing everything on my own anyway), but if I didn't use it, Stephen would lose his Medicaid. So we determined I should definitely use it so that I could at least get a break here and there and it would allow me to maybe go back to work part time. Well......long story short everyone involved from the hospital to my benefits coordinator at work was wrong; my insurance does provide it and now we have nothing. (if I take the nursing from my insurance though, we are still responsible for paying a portion the bill)

I'm pissed for a slew of reasons. I won't go into them all. But I'm really mad that we could have had nursing help from the day Stephen came home, when I really needed it. And now without the nursing care, I'm going to lose my job. Which means I'll lose my health insurance and we will have to switch to Bill's health plan. And what if his Plan doesn't pay for private duty nursing? Then we are back to square one totally and I imagine I'll have lost my window of opportunity to get his Med Tech waiver.

Why do they make this so difficult?!?! And if my insurance company had given me a case manager to begin with, this all probably wouldn't have happened. But of course, we were denied that too.

I really could just scream and cry I'm so frustrated. And to make matters worse, the woman who is our case manager at the State who determined all of this is on vacation until next week and I only have until then to figure out if we are going to try to appeal or apply for a different waiver. Seriously, when am I ever going to get a freakin' break!?!?! It's never ending.

Sunday, April 10, 2011

Stephen's Baptism

I have not written about Stephen's baptism much and have not shared the details of that day before now. I sort of put away all the memories from that day, physically and mentally, and haven't really pulled them out until now. At the time, I felt like that day was a very special moment that Bill, Stephen, and I were able to share together...just the three of us. But now that a few months have passed and Stephen's health is so much better, I can't help to (selfishly) feel a little robbed that we weren't able to share that special moment with the rest of our family, Stephen's god parents (my sister and brother-in-law) and the rest of the world. And celebrate the day like "normal" families do. But today as I pulled out a copy of the liturgy from the service and looked back at the pictures from that day, I can't help but thank my lucky stars and God that we are where we are today because little Stephen was so incredibly sick at that time (he was 5 days old and less than 24 hours before his surgery when he was baptized). It's a good reminder about how far we have come since that day.

Reverend Anne Holmes performed the baptism on Sunday, January 9, 2011. As luck would have it, that Sunday was actually Baptismal Sunday and baptisms were being performed at churches all over the world that day. She had been the chaplain on call the night Stephen was born and had blessed him that night and every day thereafter. She continued to visit him for weeks after he was born and felt a special connection to him. She wrote a very special note to Stephen and read it him following his baptism and gave him a small rose quartz heart. I'd like to share that note with you all:

Dear Stephen:

On the occasion of your baptism, I am giving you this rose quartz gemstone in the share of a heart as a reminder of this special moment.

Rose quartz if known as the love stone. It helps the user feel a strong sense of self-worth, and therefore being worth love. Rose quartz is the stone of universal love. This meaning of rose quartz includes love of the self as well as love of others. Rose quartz symbolizes the ability to open one's heart to the fullness of love.

This particular stone was given to me when I was having a difficult time and struggle of my own. It served as a symbol of the love my family and other surrounded me with as I walked on my journey. It served to remind me of God's love - that knows no end. It helped to remind me that God is always with me no matter where my journey leads.

Stephen, as I pass this tone to you my prayer is that it will be a constant reminder that you are not alone, that are a beloved child of God - A reminder that no what - God hears your prayers. A reminder that you are surrounded by doctors and nurses and hospital staff and chaplains who love and care about you. I hope that this stone will also let you know that your life and your very presence has been a gift to those who have come in contact with you.

You are little guy blessed with parents who love you so much that they have done everything possible to help you stay with them. They are wonderful people who, just as you touch those around you, they touch those around them.. They have brought strength and unconditional love to you and give of themselves freely to those who care for you. You may share your gemstone with them as they travel with you on this journey so that your hearts remain open to the love of God, the love for each other and the love from those who surround you.

Stephen, your journey in this life is not certain, what you life will be like remains to be seen. But know that our lies are not measured by length of time but as Abraham Lincoln said "In the end, it's not the years in your like that count. It's the life in your years."

Stephen, you have truly lived a very long life in a very short amount of time. You have shown many what love can be. You have shown many what strength is. You have surprised, amazed, and delighted those around you.

May this gemstone remind you that you are surrounded by many who love you mightily, with a deep, powerful, and abiding love that will never end.

May God bless and keep you
The Reverend Anne E. Holmes

Thank you Anne for your beautiful words. I hope that you are still reading this blog so you know how much your words meant to me that day and still mean to me today. They will forever be a reminder of how close we came to losing our little boy, but how special he is that he was chosen to live and go on to teach others, including me, about strength, patience, kindness, and the power of prayer. I hope that someday we will meet again so that you can see how far we have come!

Here are a few pictures from that day:

Friday, April 8, 2011

March of Dimes Walk for Babies

It's no surprise to anyone who has been following my blog that we LOVE our NICU family. And when I say family, I mean all the nurses, doctors, and staff at INOVA Fairfax hospital NICU. So when we heard the March of Dimes Walk for Babies is in May, we knew we had to participate.

March of Dimes typically helps preemie babies, but really their goal is to help all families with babies in intensive care; whether they are premature or suffer from other illnesses, diseases, and disorders. Having a child in intensive care is not easy and most of the babies in the NICU are there for extended stays, so March of Dimes tries to make that stay easier for the families by providing support groups, instructional classes, and other events to help make that time a bit easier. And although we weren't really able to take advantage of most of their services, we know what it's like to have a sick baby. And we would do anything to help other families with sick babies and to support the doctors and nurses who take care of and cure those sick babies.

So we are more than excited to participate in the Walk for Babies! I've added a badge to the right side of the blog in case anyone is interested in supporting us and the NICU. We would appreciate any and all support, even if it's just a shout out on the blog!

And a big shout out to everyone we saw today during our mini-reunion at the NICU. Stephen had labs at the hospital and we got lucky that we were able to see so many of our favorite people! It was so amazing to see you all and we miss you everyday! Big hugs and kisses!!!!!!

Wednesday, April 6, 2011


So I guess I will NOT be winning mother of year this year because I clearly have no idea how old my own baby is! I said in my previous post that Stephen was four months old, when in fact he's only three months old. I think I probably told five people he was 16 weeks old today before I realized I had left my brain on another planet the past few days. My apologizes Stephen! Mommy loves you!!!! :)

Tuesday, April 5, 2011

4 Months

Yesterday was Stephen's four month birthday. Can you believe it?! Sometimes it feels like he was born just a week or two ago, and other days it feels like he should be a year old. I think it seems that way because it's really been since October 19th that we've been dealing with everything. Not a day goes by that I don't think about everything that has happened since that Tuesday morning but it feels as though years have passed and I've aged about five years myself. And sometimes it feels like all those terrible things we went through actually happened to someone else. Because things like this happen to other people, not us. And also because on the surface we have a healthy baby boy; something no one ever thought would happen. It's just so weird to think 5 short months ago we actually picked put a cemetery where Stephen would have been laid to rest had he not survived. It's sickening thinking about it now. But at the moment it seemed like the right thing to do.

Now we find ourselves struggling with much different things. Things that ALL new parents struggle with; getting Stephen to bed, getting him to sleep through the night, figuring out a routine/schedule, and trying to figure out if all this crying is normal or if something is wrong with him. We never read any books and went to any classes so we are learning as we go and trying not to do things that will come back to bite us in the ass. Like getting him so addicted to his pacifier that he can't sleep without it. Oops....we already did that! Ugh.

But all-in-all I think it's been going really well. His health couldn't be better right now and that's what's most important. And now that the weather is getting nicer, we've been able to get outside and get some exercise. Plus, Stephen loves going on walks which makes it even better.

Our goal for next month is to continue to grow and get longer and be cleared by the pulminologist so we can check one more doctor off the list. That would be awesome! And as always ward off any infections and keep his dialysis going as well as it has been.