Maternity photos

As promised here are some of my favorite photos from our maternity photo session. I hope you enjoy them as much as I do!































I hope everyone has a fun, safe New Year's Eve tonight. Billy and I decided last minute that we would go out to dinner tonight since next year we plan on having a little guy in tow! Nothing would make us happier than if this New Year's turns out to be our last New Years without the responsibility of babies or kids aka DINKs.

See ya' in 2011!

Love
Lindsey

Belated Merry Christmas!

So sorry I missed wishing everyone a very Merry Christmas! I wanted to post our Christmas card, but our scanner at home isn't working. And I've been working on getting all my new "toys" set-up so I can blog and share pictures with everyone from the hospital...and now I'm back at work, so I've been a bit MIA. Plus we had a very busy family-filled Holiday and when we weren't running around, my butt was parked on the couch. I know, excuses excuses :) We spent Christmas Eve with Billy's parent's at their house and went to the candlelight service at a nearby Methodist church. It was a very warm, relaxing service and I managed to only cry once; during Away In a Manger. It's one of my very favorite songs and if you really read the lyrics, it's a very sweet song. A lot of the Christian Christmas tunes were a little tough since so many refer to a little baby boy being born.

Christmas morning was absolutely wonderful! Billy, Mabel and I all woke up snuggled in bed together with snow falling outside. It was awesome! Billy then lit a fire (in the fireplace) and we exchanged gifts together and then Billy's parent's came over for Christmas morning breakfast. After exchanging some more gifts, we then went to see True Grit. Honestly, save your hard earned cash and wait for it to come out on video. I'd give it a 6 out of 10. Apparently the original is much better than the remake.

Later that afternoon my parent's came down from PA and we just hung-out at our house, exchanged gifts, and spent time together. Sunday morning, my sister, brother-in-law and my two nieces made their way down to our house from PA and the real party begun! My nieces will turn 5 and 2 in a few weeks so it was really fun watching them open their presents and run and chase Mabel around the house. Later that day we all headed over to Billy's parent's house for a big party and get together with lots of friends and family. My sister and her family went back to PA on Monday afternoon after a brief trip to the Natural History museum to check out the elephant, butterflies, and animals and my parent's went back to PA on Tuesday afternoon. All-in-all it was a great Christmas!

And Santa was very good to me this year as I did get all the tools I'll need to keep everyone up-to-date on Stephen while we're at the hospital. We now have an iPad and an awesome DSLR camera, so we'll be able to share photos and videos almost instantly with everyone. But we also received some really special gifts this Christmas that I'd love to share with everyone (I hope to post some photos later once I get things figured out).

You already know that I got the kidney/PKD necklace from Bill, but Billy also got me a very special garnet ring that I absolutely love. Garnet is January's birthstone, which will be Stephen's birthstone. It's beautiful and I love it so much and I dread having to take it off when I go to the hospital. My sister so thoughtfully had PKD awareness ribbon pins made bearing Stephen's full name for all of us. The ribbon color for PKD is teal. I love the pins and it was such an incredibly thoughtful gift and I will definitely be bringing/wearing that to the hospital. She and Kevin also got us our maternity photos which was also incredibly sweet and thoughtful. It was something I wanted to buy myself, but probably wouldn't have bought the whole collection, but I'm so glad I have them. I downloaded them to my iPad and computer already and hope to share with you some of my favorite photos. I will cherish those photos for the rest of my life!

But the most unexpected gift was actually from the photographer, Danielle Hobbs, who took the maternity photos. Danielle was so touched by our story (she herself is a Mom of three and had a friend go through a similar situation to ours) that she made us a beautiful photo album/book of our maternity photos. It's gorgeous and her thoughtfulness and generosity seriously touched my heart and made me cry. I still don't know how exactly to thank her...but I'm working on it! Words really can not express how much that book means to me. Please do yourselves a favor, if you haven't already, and check out her website. http://www.daniellehobbsphotography.com/blog/ Her newborn pictures especially are just amazing!

Danielle - if you're reading this....thank you from the bottom of both Bill's and my heart!!!!!!

We also had a doctor's appointment thrown in there on Tuesday morning. Nothing new to report though. He's still sitting pretty in my belly growing like a bean stalk. We got a glimpse at his heart beat and the doctor said he was taking some breaths, so that was really cool. We go into the antenatal testing center Tuesday morning at the hospital to check his heartbeat again, so hopefully we'll know more then. But the #1 thing on the to do list this weekend.....pack our "to go" bags!!! :)

Shot #2 and Other Debacles

Thanks goodness I took the day off yesterday!  It was a very long and frustratingly (is that even a word?) annoying day.  First off, apparently one of the side effects of the steroid injections that the nurse didn't tell me about is insomnia.  Of course the one and only side effect that I got was insomnia.  I slept maybe (if I was lucky) two hours Tuesday night.  And what do you get when you have a sleepy, uncomfortable, hot, very pregnant woman?....a very cranky irritable woman.  And that to a cranky, irritable husband (all work-related) and it's a recipe for disaster.

Shot #2 went off without a hitch for the most part.  We had to wait much longer for someone to administer the shot, but once they took me back, it was super quick.  Like the first shot, it didn't hurt much at all, but this one left a pretty dandy bruise on my love handle.

After the shot, we were off to the outpatient lab to have our blood drawn for the genetic testing.  This is where everything went downhill.  First, I thought I had all the correct paperwork, but it turns out I didn't.  So we had to go back to the geneticists office and get copies of the doctor and lab orders.  That set us back some more time.  Then when we got back to the outpatient lab, they wouldn't except Billy's paperwork because his name was written as "Bill" and his ID says "William."  Seriously!?!?!?!  Are you kidding me?? It's two vials of blood.  We're not trying to take a one-way flight to the Middle East with no luggage people!!!  So they needed to get new paperwork for Bill. 

Finally I went back to have my blood drawn and they didn't have the saliva kit.  So it was another call over the geneticist's office about that.  It was a serious mess at this place.  By the time they got Bill's paperwork, we had to leave to make my doctor's appointment.

So off to Dr. Khoury's we went.  We ended up having a short sonogram to check his head, abdomen, and kidney size and then met with Dr. Khoury to discuss a few things.  We found out yesterday that Stephen is up to 6 pounds 11 ounces, his kidney's are now 9 cm in length, his head and abdomen are about 2 cm apart, but his head is in the 50th percentile and his belly is in the 80th.  So far, that's okay, but they'll continue to monitor that as he grows over the next few weeks.  Our "homework" for next time is to discuss whether or not we want the doctor's to perform an emergency c-section if the baby is in distress during delivery or if we want to forgo any type of emergency c-section and hope that Stephen makes it through delivery.  An emergency c-section is definitely not ideal, and if I need a c-section, I'd certainly rather have it planned.  So we have to talk that over and let the doctor's know our wishes next time.  At this point, we're still planning for a natural (with drugs) childbirth and Dr. Khoury will allow me to carry Stephen up until 41 weeks and then we'll induce if nothing starts happening on it's own.  Still no sign of any changes yet, but hopefully we'll see something happening at my next appointment or first one in the new year.  I'm honestly not sure I can handle another month of all of this.  Although Dr. Khoury is in Lebanon until January 7th, so little Stephen needs to stay put until he's back in the States!

Oh and I asked Dr. Khoury what it will feel like when I start getting contractions and he just laughed.  I honestly don't know these things since I haven't taken any birthing classes or anything.  I thought I was having a contraction the other night on my way home from work in bumper-to-bumper traffic and paniced a little bit.  But they were just regular old cramps that I've been getting every day or two.  But seriously, if you know what DC traffic is like on 395 and 495 at 6 pm right before Christmas, you can understand my reasoning for panicing a little!!

After our appointment, it was back to the outpatient lab to have Bill's blood drawn.  It was quite a long and frustrating day, but I'm glad that we got everything out of the way and got the tests taken care of.  One less thing to do after Christmas.

And much to my surprise, I actually slept last night from about 1 AM until 8 AM this morning.  So we're all much happier in the Schwartz house today.  Plus I get off work at 3 PM today and I'll be off for the next 5 days.  Hallelujah!!!!!!!

Shot #1

I had my first of two steroid injections this morning over at the hospital.  I think I've mentioned these injections multiple times before, but in case you missed it, the injections are supposed to help with lung development.  The technical terms for the injections are betamethasone and dexamethasone.  There's real no scientific evidence that the injections will help Stephen because of all the various issues he faces, but it can't hurt, so we went for it.  But I had the weirdest dream last night about the shot.  I guess I was anxious about it today after hearing they administer it in your butt!  In my dream, we were waiting in the main waiting area in the lobby of the hospital and the nurse came out and wanted to give me the injection right in the middle of the lobby and I freaked out.  It's so funny how you dream about something that's on your mind.

But the shot didn't end up being that bad at all.  And it wasn't completely in my tushy.  The nurse gave it to me in my back upper right hip.  Tomorrow's injection will be in the back upper left hip.  They have to be 24 hours apart.  And I got to hear Stephen's heartbeat while I was there, which is always a plus.  And I saw Dr. Khoury when I walked in this morning and he gave me a big hug, which was much appreciated.  It makes you feel good when doctor's recognize/remember you because you know they probably see at least 20 patients throughout a day.

Tomorrow I'll have all sorts of stuff to share since I get my second shot, we give our DNA samples for our genetic testing, and then we have our big 36 week check-up and get to see Stephen!!  Yipee!! 

Happy Monday!

Can you believe that Christmas Eve is just 4 days away?!  I just can not believe that in a few short days we're going to be celebrating Christmas, then New Year's, and then the baby will be here.  It's so crazy!!!  Billy and I had a super productive weekend filled with 3/4 fun stuff and 1/4 not so fun stuff.  And thank goodness he was around this weekend and not working, because I seriously wouldn't have been able to get anything done.  At this point, it's hard to spend much time on my feet before my back starts screaming at me to sit down.  And I always end up pushing it too far, and then I'm really in pain.  So it was such a blessing to have someone help me waddle through the mall to pick up the last of our Christmas gifts and push the cart in Costco.  Yes, you heard right.  We did Costco, the mall, Dick's, and Toys'R'Us all in one day....and the Saturday before Christmas no less!  And we survived with flying colors!  And to top it all off on Saturday, we had a really nice romantic Italian dinner, just the two of us, in Old Town Saturday night. 

Sunday morning was the "1/4 not so fun stuff."  We have been talking for weeks about what our wishes are for Stephen in the event that he doesn't live.  We've been going back and forth about it and haven't been able to come to a final decision, mostly because we don't want to make a decision, but we know that we're better off making a decision now than in the moment.  So we drove out to Fairfax Memorial to see if it was a peaceful place and a place we would want to lay Stephen to rest.  I don't really have an answer since the whole thing is just to sad to even think about, but I will say that it wasn't a terrible place.  And there were a lot of people there visiting loved ones, which made me a little bit better that at least it's well visited and taken care of.  Plus, they have a few sections of the cemetery dedicated to children which I like too.  But it was still really sad no matter how you look at it.

The rest of the day we spent decorating the house, the Christmas tree, and Billy put up lights outside in our bushes.  The condo looks so great and festive and I'm so glad we went to all the trouble to do it this year.  But just from this snippet about our weekend, you can see what an emotional roller coaster ride we live day-to-day.  One minute we're trying to figure out where to put the Christmas tree and then next we're trying to decide what funeral home and cemetery we might possibly use in a few short weeks.  It's really quite strange.

Check This Out!

Lucky for you guys, it's a two post kind of day!! :)  I just randomly found this article and video from CBS News while tracking down the phone number for Dr. Khoury's office.  The article is from 2008, but talks about the rise in the number of premature babies in the US and interviews both Dr. Khoury and Dr. Baker. And you can catch a glimpse of both of them in the video. How cool is that?!

Here's a link to the article:  http://www.cbsnews.com/stories/2008/06/16/eveningnews/main4185482.shtml

Here's a link to the video. http://www.cbsnews.com/video/watch/?id=4185540n&tag=related;photovideo

Let It Snow, Let It Snow, Let It Snow

As you probably guessed, Tuesday wasn't such a hot day.  But yesterday proved to be a pretty good day and I think today will be much of the same.  I don't know what it was, but I just irritable, uncomfortable (my office share has been broken), hot (my office temp is close to 80 degress), and just plain pissed off on Tuesday.  I really shouldn't have been since I didn't work on Monday and Tuesday was a short day because we had a doctor's in the early afternoon; but it was.  I guess I'm entitled to one of those every now and then.  At least yesterday I was busy at work all day (which always makes the day better) and we ended up getting our Christmas tree last night and hung the Christmas wreath on the front door.  Christmas decorations and especially the tree just make me happy, no matter the circumstances!! 

Just to give you a little update after our appointment on Tuesday, the little guy's heart is still holding strong and he's definitely still kickin'!  We got to meet another one of the doctor's in the high-risk OB practice we're now going to; Dr. Nies, so that was helpful.  And we decided that we're going to go ahead and get the steroid injections.  Well, I'm going to get the steroid injections.  We first heard about these steroid injections way back in October from other Mom's who have had premature babies.  The purpose of the injections is to help the lung tissue develop.  There has been a great debate among all of our doctors about whether or not the injections would help Stephen.  All of them up until Dr. Baker told us that there no evidence that the injections would help at all, but Dr. Baker felt there was no harm in getting the injections and there have been some studies that have shown them to help in situations similar to ours.  And when I asked Dr. Nies about it, she agreed with Dr. Baker.  Everyone has had a differing opinion on these injections, but since they can't hurt anything, it's definitely worth a shot.  No pun intended!!

So next week, I'll need to get one round of injections on Tuesday morning and then a second round 24 hours later on Wednesday morning; both at the hospital.  Then we'll have another OB appointment Wednesday afternoon where we'll get to see the little guy again and they'll start checking me to see if we're getting close to delivery or not.  And from now on, I'll see the doctor once a week until Stephen is born. 

Unfortunately, no update on his size, but I can definitely tell you that he's growing and getting bigger.  I've been packing on the pounds (a lady never reveals her weight....sorry!) and my belly is growing,  but not much else has grown (except my poor little fingers, feet and ankles), so I know he's got to be getting big!!  Based on his growth so far, my guess is he's getting close to 7 pounds now.

Oh and in other news....I've given up on Metro.  After the fire in Metro center on Monday, a train breakdown and offload at Pentagon Tuesday morning (while I was there no less and had to wait 20 minutes until I could get on the next train), and a suspicious package yesterday morning also at Pentagon, which turned out to be a blinking Christmas ornament, I'm driving from now on.  Good riddance to Washington's broken public transportation system!  See ya' next year.....maybe. Now let's hope the snow doesn't totally snarl Washington traffic tonight!

The Truth Is...

I am so tired of having to lie to people and answering their questions about my pregnancy and the baby with a smile.  It's only 1:45 PM and I've already have had to have more than 5 conversations with random people either at work or on the Metro about when my due date is, if it's a boy or a girl, and how excited I must be.  It's frustrating and annoying.  But what am I going to do, tell random people in an elevator that I'm due in 4 weeks, but my baby is sick and probably won't live, so no, I'm not that excited. 

I made the mistake once and told the lady in the fax room that my baby was sick because she kept pressing me and pressing me for more answers and I was always faxing medical records request forms.  She just looked at me like I had two heads, smiled, and didn't say another word.

Just one more reason why I just want to stay home and avoid people all together.

Trial Hospital Run and Photo Sneak Peak

Bill and I had quite an eventful weekend this past weekend! As the title of my post explains, we had ourselves a little "dry run" Saturday night to the hospital.  Our plans for the weekend originally included putting up the Christmas tree and decorations and participating in a maternity photo session.  But our plans changed a little bit Saturday evening when I started getting really sick.  Luckily, we had taken our maternity photos earlier in the day, so we were still able to at least accomplish that. 

A good friend of mine had photographs taken of her newborn baby girl a few weeks ago and I loved her photos so much, that I contact her photographer, Danielle Hobbs, to see if she would have some time to take a few pictures of Bill, my belly, and me.  Luckily she did and after explaining a little bit of our story, she so graciously offered to take pictures for us.  So Saturday afternoon, we headed out to her house in Bristow for a photo shoot.  Danielle posted a sneak peak of our photo session on her blog and I LOVE them!!!!  Check out the pictures on her blog at http://www.daniellehobbsphotography.com/blog/

Thanks so much, Danielle!!!

After our photo session we stopped at Wegman's for some browsing and to pickup something for dinner.  Bill and I love strolling through Wegman's and since they don't have any inside the Beltway, any time we find ourselves near one, we have to stop.  And of course, it didn't disappoint!  But by the time we got home and started cooking dinner around 8pm, I started to feel really nauseous.  I hadn't felt that way since my 1st trimester when I had morning sickness all the time.  Unfortunately, I only felt worse as the night went on and around 11:30 PM we called the doctor.  Thankfully, she called us right back and told us we should go to the hospital so they could run some tests and make sure everything was ok.

Bill suggested we pack a few clothes, just in case, so we each packed a little bag with some clothes, toiletries, and our books....fed the dog a handful of treats and headed off to the hospital.  Lesson #1: never leave your gas tank empty when your wife is 35 weeks pregnant.  Lesson #2:  Pack your overnight bag beforehand so you don't forget important things like underwear.  Lesson #3:  Don't forget your wife's overnight bag in the car.

So not only was the trip to the hospital a success because I left feeling 100% better, but we learned some valuable lessons on how to be prepared for the next trip to the hospital!!  It actually was a success too because we found out how easy the check-in process was and how great the triage nurses are.  My nurse was actually 38 weeks pregnant herself (and looked fabulous) and was so nice and comforting...because I felt pretty stupid going to the hospital just to puke my brains out, get some IV fluids, and a little medicine.  But it was really good to hear Stephen's heart beat and know that he's perfectly fine and to get a clean bill of health.

Unfortunately, I think I've passed my little stomach bug onto Billy and he's home in bed today.  Oops!!! So we're taking it easy in the Schwartz household right now and Mabel's beyond thrilled to have Mom and Dad at home two days in a row!!

NICU Visit

Last Friday we finally got to meet with the neonatologist and had a tour of Fairfax hospital's NICU and labor and delivery floor(s).  We had not actually met face-to-face with a neonatologist yet, so Dr. Baker was the first time we had met with a neonatologist.  There's not a whole lot to say about our appointment except that Dr. Baker spent a lot of time with us talking about all the different ways we could approach Stephen's breathing care and what would essentially happen as soon as he enters this world.  Basically we're going to take a step-wise approach to his lung care.  I won't get into all the details, but that basically means that if Plan A doesn't work, we'll go to Plan B.  If Plan B doesn't work, then we'll go to Plan C and so forth.  I think there are probably about three or four different options we have available, with the last always being providing comfort care to Stephen.  What I like so much about Dr. Baker was his sincerity, honestly, and compassion.  He was definitely a good listener to all our concerns and just had this really gentle way about him. 

I usually have one really bad/depressing a week (not counting the weekends) and last Thursday was it.  So I was already an emotional wreck going into Friday.  And when I expressed my concerns about seeing and holding Stephen before he's taken away, Dr. Baker was so good about listening to my thoughts and understanding how important that was to me. He also answered my question beautifully about his opinion on his Stephen's outcome.  I flat out asked him, "Based on what you've seen on the ultrasound reports and tests, do you think there is any chance he has any viable lung tissue."  He looked me straight in the eye and said, "There is no way of knowing what's going to happen when he's born, but there's no reason not to have hope."  That's all I needed to hear to know that he's going to do everything humanly possible to help Stephen breath. 

Dr. Baker then took us through the NICU to see how the babies are monitored and watched and to get a feeling for the shear size of the NICU.  I didn't know what to expect, but I definitely didn't expect to see so many little "incubators" and cribs.  I think the NICU has a capacity of about 75 babies and we must have seen at least 50 babies in the NICU.  It was huge! Because Fairfax has the highest level NICU in Northern VA (there is a high level NICU at Georgetown and Children's National), they receive a lot of transfer babies from other hospitals.  So luckily, they weren't all born at Fairfax, but a good majority were.  The only downside to the NICU is that during cold and flu season, only parents are allowed to visit.  So that could be an issue for us down the road, but our nurse coordinator says in special circumstances like ours, they might be able to make an exception.  If Stephen makes it through the critical first couple of days, Dr. Baker expects that he could be in the NICU for anywhere between 3 and 4 months.  And I know there will be some pretty unhappy grandparents (and Aunt Jess) if they can't see their grandson for 4 months!!! 

Since my post is already a small book, I'll save the rest of our visit at the hospital with Kelly and the hospital chaplain for another day.  Plus I think today's my "bad day" for the week, and I'm not really feeling up to it today.  Today is one of those days when staying in bed with Mabel would have been the best answer to my problems.  But enough whining from me for one day!

XOXO
Linds 

Big Birthday Weekend!

The Schwartz's had a busy weekend, and I unfortunately, didn't get a post up on Saturday to wish my husband a big HAPPY BIRTHDAY!!!!  So happy belated birthday, Billy!!! 

[Don't worry Billy, I won't disclose which birthday it was! :) ] 

Love you, B!!! XOXOXOXO

Unfortunately, his team lost on Saturday to Auburn, but I think all-in-all it was a pretty good weekend spent celebrating with family and friends! And I'd have to say it was a pretty productive weekend for this pregnant lady as well.  Made Billy a birthday cake and sent out a stack of Christmas cards on Friday, we tried out a new restaurant in Old Town Friday night (Pizza Paradiso....which was delicious), ran some much needed errands on Saturday, and was able to knock off one more person off my Christmas list Sunday morning.  Six down and only 3 more to go!!  Next weekend I hope to get the Christmas decorations out of storage and put up the tree and we'll also be having some maternity photos taken of me, Bill, and my belly.  I've been so terrible with taking pictures of the past 8 months, so I think the photos will be an awesome keepsake and remembrance of our time with Stephen before he was born.  But I'll share with more you later about that and our visit to the hospital last Friday.

Check-Up Today

We had a routine check-up today at our new OB's office and got to see our little man this morning!  He's continuing to grow and is up to 5 lbs. 5 oz.!!!  I couldn't believe it.  Bill and I were sure he had to be around 4.5 lbs, so we were totally shocked to hear he's over 5 pounds now.  But we're so thrilled that he's continuing to grow.  His head size is right on for 33 weeks 5 days, and is abdomen is slightly ahead of schedule (35 weeks), but that's not too bad considering his kidneys are over 7 cm a piece.  To give you an idea of how big that is, an average adult female kidney is between 10 and 13 cm.  Right now his head and abdomen are exactly the same size, so that's also good.  As long as the abdomen doesn't surpass the size of his head, we're in good shape.

So based on the measurements they took today, we're back to delivering vaginally and not a C-section and we're just going to let nature takes it course between now and January 14th.  Once I get to the 14th, the doctor's will schedule an induction and we'll go from there.  So between now and January 14th, they'll continue to monitor Stephen's size and progress and my body's progress and we'll decide when the time arrives how he'll enter this world.  But it's definitely looking like we'll have a January baby!!

Prayer for Stephen

A friend recently sent this prayer to me for Stephen, Bill, and I and I'd like to share it with all of you.  I think it encompasses all the things we have been wishing and praying for, but I just wasn't able to pull it all together in such an elegant and heartful way.   Just a warning...have your tissues handy! Her prayer definitely tugs on the heart strings!!
____________________________________________________________

Father God~~  Thank you so much for the wonderful Schwartz family!  We will all continue to blessed by the new little life of Stephen!  Thank you that he is fearfully & wonderfully made.  I pray for the peace that surpasses all understanding to be upon Lindsey and Bill.  I pray that they would remind themselves that little Stephen belongs first to You.....and that You love him more than they ever could!  I pray that they would remember who You are and that You are a God of love, faithfulness & healing.  I pray that You would touch Stephen with Your divine healing power. I pray for the health and development of his kidneys and lungs. I pray for good reports from Doctors.  May Your Spirit go ahead of them paving the way.  I thank You ahead of time for what You are going to do in all of these lives!  I give you all the glory and praise!  In Jesus' name I pray these things as I lay this family in Your lap of love and peace.  Amen and Amen
____________________________________________________________

Thank you Sarah for that amazing gift!  I will forever cherish this prayer for my family!!

Happy Thanksgiving!

It's taken me a few days to actually get up the courage to write this post and then it took me another two days to actually get the words out.  I've always loved Thanksgiving; I mean, what's not to love about eating tons of yummy food, not having to work or go to school for a few days, watching the parade and football to your hearts content, maybe doing some shopping, and spending time with family and friends?!  It's a fantastic holiday!  But I've never spent as much time as I have in the past week thinking about what Thanksgiving truly means: giving thanks, gratitude, and appreciation to God for the relationships and everything we have been blessed with over the past year.  Had this been a "normal" Thanksgiving for us, I would have been singing God's praises for blessing Bill and I with the ability to conceive a baby and for giving us a strong, healthy baby boy.  But Thanksgiving takes on a whole new meaning when your life has been turned upside and it's hard to find anything to be thankful for.

But....in the spirit of trying to be positive for my little guy and looking on the bright side, I've put together a little list of all the things I am thankful for this year:

1. My little angel, Stephen.
2. My amazing husband.  Without him, I wouldn't make it through the day.
3. My parent's and my in-laws and everything they have done for us.
4. My sister, who faithfully calls and checks on me every day and her husband, Kevin who came to visit for a weekend.
5. That everyone is healthy this year!!!!!!
6. For our amazing friends (old and new) who have been praying for us every day, giving us tons of support, and who have connected us with some fantastic doctors across the country.
7. Each and every single move Stephen makes in my belly that lets me know he's still alive.
8. My job
9. Good health insurance
10. My little girl Mabel.  She knows just when to cuddle up next to me on the couch when I'm feeling down.
11. Living in an area with excellent health care resources
12. My little niece Chloe and her one kidney.  Because of her one kidney, we had another sonogram at 27 weeks an found out about Stephen's kidneys.
13. All of the compassionate doctors and nurses we've met
14. The patience that everyone has had with me over the past couple of weeks. 
15. Being able to spend Thanksgiving with those that I love the most in this world and thinking about those who with their families and friends

I know this is a day early, but since I probably won't get a chance to post tomorrow, I just want to wish everyone a happy and healthy Thanksgiving and I hope that you're able to spend the day surrounded by family or friends celebrating all the things you're also thankful for this year.  And of course stuffing yourself with tons of turkey and sweet treats!!!

Much love,
Linds

Stocking Stuffer

I found a link to this seller on Etsy the other day while surfing through some PKD blogs and websites and thought that these necklaces would make a great Christmas gift or stocking stuffer for the ladies in my life.  Etsy seller, TwiningVineDesigns, makes these adorable little pendants in the shape of a kidney and then donates $25 from the sale of each necklace to the PKD Foundation.  How great is that?!  The necklaces come in single or double kidneys and in polished or hammered sterling silver.   

Here's a picture of the double necklace courtesy of TwiningVineDesigns

You can find her Etsy page here:  http://www.etsy.com/listing/57895381/pkd-awareness-double-kidney-pendant

He doesn't know it yet, but I already bought myself one as a Christmas gift to me from my hubby!!! :)

Staying Close to Home

Sorry it's been so long since I posted about what's happening with Stephen.  We had one crazy week and then had a fun-filled weekend full of tailgating at Fed-Ex field (Penn State was in town to play Indiana) and spending time with my parent's, sister, brother-in-law, and niece.  But I really wanted to let you all know what happened this past week.

This past Thursday, we met with Dr. Alfred Khoury at Fairfax hospital.  Dr. Khoury is a perinatologist and high right OB/GYN.  He's the first perinatologist we've met with that actually delivers babies, so this was as much an appointment for Stephen as it was for me.  I was bit on edge going into this appointment because we knew that if we didn' like Dr. Khoury, we were going to CHOP, and setting up the appointment with Dr. Khoury and Dr. Baker, the neonatologist at Fairfax was far from easy.  So already I was a little skeptical as to whether or not we were going to get comprehensive coordinated care at Fairfax. 

Luckily, a few minutes into our appointment, the nurse called in Kelly Gallo, the nurse coordinator at the Center for Coordinated Fetal Care at the hospital and all  my concerns with getting the appointments set-up and everything else was squashed.  So that was really positive.  She actually ended up calling me an hour after our appointment with Dr. Khoury ended with an appointment time and day for Dr. Baker, and will take us on a tour of the NICU and labor and deliver area that same day.  Bonus!!

During the appointment with Dr. Khoury, they did another sonogram which Dr. Khoury partially sat in on.  He wanted to make sure he got a lot of pictures and measurements of Stephen's belly and abdomen.  The appointment with Khoury did start out a little rough though.  Like all the other physicians, he had was obligated to give us "bottom line."  The discussion about how sick Stephen is and how underdeveloped his lungs are and will be when he's born and everything else we have heard.  So then we had to have the discussion about how we understand the severity of our situation, but we are looking for a team of doctors that will be positive and help to provide the best care possible for our baby.  After getting past that initial conversation, Dr. Khoury agreed that he was on board to do whatever Billy and I felt was best for Stephen and he would do whatever was best for my health.  He agreed and said that this was the last time we would have this conversation.  That going forward, our appointments and conversations would all be focused on what we were going to do for mine and Stephen's care.

We continued our conversation focusing on how and when we are going to bring Stephen into this world.  Dr. Khoury's main concern related to my health and Stephen's birth is the size of his belly.  Because his kidney's are so enlarged, his abdomen is also enlarged, coupled with no amniotic fluid, is going to make it extremely difficult to have a vaginal birth.  So we will probably schedule a C-section for around the 10th of January, four days shy of my true due date.  And then hope and pray that his belly hasn't gotten so big that they have to do a vertical incision instead of a low horizontal incision.  Dr. Khoury obviously will do and wants to do everything to preserve my uterus for future pregnancies, but we might not have any choice.  So we'll just watch Stephen and his growth from now until January every two weeks and then every week as we get closer.

We did get some really sad news on Thursday though.  If Stephen doesn't live until January 10th, which is a reality that we face, then I will have to continue to carry him until his little abdomen can shrink enough that I can deliver him vaginally.  It's impossible to think about, so I try not too, but it's also impossible not to.  Each time we have a doctor's appointment it's a double edged sword.  On one hand, we usually get some fairly positive news about receiving care for Stephen, but on the other hand, each doctor must tell us how bad our little guy's chance at survival is.  And each time we leave an appointment we're sad and upset and can't understand why this is happening to us and why life is so unfair.  The worst part for me is that as we get closer and closer to the due date, I can't keep thinking how what should be the happiest day of our lives is probably going to be the worst day of our lives.  Nothing will ever be as bad as what we might face in 7 short weeks.  And nothing short of a miracle can help us.

But the best thing that came out of last week was making the decision that we're going to stay here at home and have the baby at Fairfax.  We feel confident that we are going to get world-class care for Stephen at Fairfax and that traveling to CHOP probably won't change the outcome.  Although I will miss the people we met at CHOP and the amazing facilities they had, it's important for us to be close to family and not have the emotional and financial stress of relocating.  Plus now that I know that we have someone like Kelly there to support us and help us with anything we may need, a huge weight has been lifted off my shoulders.

Next week is a bye week for Team Schwartz (we have no appointments next week).  And then we'll get to see Stephen again at Dr. Khoury's office on December 1st and finally with Dr. Baker on December 3rd.  I'm just really looking forward to a tour of the hospital and doing something that normal couples all do before their baby arrives!

I hope everyone had a great weekend and I'll catch-up next week before Turkey Day!!

MIA

Sorry I haven't posted in a few days.  Life has been more than hectic the past few days and everything besides work and dealing with doctors and health insurance has gotten away from me; including my house which is a mess,  I'm apologizing already to anyone who might be visiting this weekend (and you know who you are!).  I will try to post an update tomorrow.  We had an appointment today with a high risk OB/GYN aka perinatologist, so we have lots to share.

Check back tomorrow for more!

2 Months and Counting

Yesterday marked the 2 month count down until my official due date of January 14, 2011.  I can't believe it's already mid-November and Stephen will be here before we know it!!!  It felt like the 2nd trimester took forever, but the past four weeks have flown by.  And boy has he grown.  He continues to move around a lot in the late evenings and unfortunately, his little fit have been wedged in my right rib cage for the past two months it seems.  Sleeping has definitely been a challenge (especially when Mabel insists on wedging herself between Bill and I) the past couple of weeks as well, but I'm figuring out little ways to wedge pillows under my belly to help alleviate some of the discomfort at night.  And since he's pretty much balled up completely on my right side, that's the side where he tries to punch his arms and legs out.

It's also really hard to believe that tomorrow will be four weeks to the day since we got the news about Stephen's kidneys.  In those four short weeks, we've visited over 8 physicians and three different hospitals (not including Fairfax) in three different States.  I can't even begin to count the number of phone calls with physicians and nurses over those four weeks.  There have been so many calls that we actually had to increase our cell phone plan minutes! But things are definitely settling down and we're getting back into our regular routines as much as possible.  Although next week's Holiday is going to be a very welcome break from the daily grind!!! 

Fairfax Pediatric Specialty - Nephrology

Thursday was our much anticipated appointment with Dr. Robert Fildes at INOVA Pediatric Specialty.  Dr. Fildes is a pediatric nephrologist who has his office in the same group as our pediatric geneticists, Dr. Lewanda.  He is not located in the hospital itself, so we did not get to meet with any other doctors or staff that day or see any of the facilities at Fairfax Hospital, but Dr. Fildes  came highly recommended from several sources, so we were extremely anxious and excited to meet with him.

To give you a little back-story, when I initially started my research for a pediatric nephrologist, I found Dr. Fildes name on the Internet.  I simply called his office and made an appointment for Nov. 10th.  A few days later, Dr. Fildes name came up when we met with Dr. Lewanda.  She was able to actually get our appointment moved up to Nov. 3rd.  Later that week, we got the call about CHOP and they wanted to see us on Nov. 3rd.  So I had to cancel Dr. Fildes appointment.  The next appointment they had available wasn't until Nov. 30th!  We took it because what other choice did we have?

Later that week during out meeting with Dr. Kher from Children's National, he suggested we meet with Dr. Fildes and deliver at Fairfax and that it was critical to find a high risk OB/GYN at Fairfax ASAP.  But we weren't getting in with any doctor's at Fairfax until the very end of the month!  So what does any sane, normal mom-to-be do you ask???  I walked over to Dr. Fildes office, pleaded our case to his nurse, and begged.  Luckily it worked (after explaining the whole situation and that I could potentially go into labor at any time since I don't have any amniotic fluid) and they got us in for an appoinment on Nov. 11th, this past Thursday.  In the meantime, we must have heard Dr. Fildes name mentioned a handful of times...from friends, aquaintences, and other physicians.

All in all, the appointment with Dr. Fildes was awesome.  He was honest with us, but compassionate to our case, and it was clear that he could handle all the kidney issues Stephen would encounter in his life; from birth through dialysis and surgery, to transplant.  He typically sees about 15 new patients (babies and children) a year with ARPKD, with varying degrees.  But he was very honest about the lung and heart problems and that while he was clearly knowledgeable on the issues and the types of help that Stephen will need for his lungs at birth, he was not the expert we needed to talk with regarding whether or not Fairfax would be a good place to be with all of Stephen's conditions. Our discussion focused somewhat on a machine called ECMO; extracorporeal membrane oxygenation.  ECMO machines are only used at the most advanced NICUs in the country and Dr. Fildes wasn't 100% sure if Fairfax has ECMO machines that could be used on infants.  Fairfax has ECMO, but they are mostly used in the PICU (pediatric intensive care unit) and not the NICU.

Basically, ECMO is an machine that acts as an artificial heart and lungs.  It's an extremely invasive procedure that removes from the blood from the baby's heart, oxygenates the blood, and replaces it.  It removes carbon dioxide and replaces oxygen.  Because it's so invasive, it is only used, a very last effort to save a baby and can have not so favorable outcomes. 

So with the help of Dr. Fildes, the neonatologists, and perinatologists at the hospital, we would need to decide if ECMO is something we want to even include in Stephen's course of treatment after birth and find out from the doctor's about whether or not they think Fairfax is a good "fit" for us.  Dr. Fildes has agreed to be our team quarterback and is taking the lead on assembling a team at Fairfax.  The other doctor's we are hoping to meet with include Dr. Khoury, the perinatologist or MFM, and Dr. Robin Baker, the head of neonatology at Fairfax Hospital.

I heard from Dr. Fildes on Friday (how great is that?!?!), and we are anticipating to meet with Dr. Baker next week and hopefully Dr. Khoury by the beginning of the following week.  Our goal is to still know where we will deliver by Thanksgiving.  And as much as we loved CHOP and we know 110% they have the capability of dealing with all of Stephen's issues, we also know that staying close to home will have other advantages that CHOP can't offer.  But as soon as we make our decision, you all will be among the first to know!!! 

Happy Veteran's Day

Just wanted to express our thanks and admiration for all of our veterans, for the men and women and their families who have given the ultimate sacrifice for their country, and for those who are currently serving in the Armed Forces.  We salute each and every one of you! 

And a special remembrance for my grandfather's, Willard J. Noll and Warren H. Bitner and Bill's grandfather, William Speed who all served our country during WWII.  Seven years ago I was lucky enough to witness my grandfather, Willard Noll, receive a Bronze Star on Veteran's Day for his bravery while fighting in the Pacific.  It was a really cool thing to witness!!

So thank you Veterans! You are our Nation's true heroes!!!

Inspirational Story

I think I might have mentioned this before, but I'm a HUGE Oprah fan.  Billy would call it an obsession, but I wouldn't go that far.  I get to catch-up on my TiVo'd episodes over the weekend when Billy's either golfing or at work, and Saturday was no exception.  One of the shows from October was titled something like "One Family's Tragedy Becomes a Miracle" or something similar to that.  I knew I probably shouldn't watch it because some part of the story was going to be really sad and I would inevitably end up in tears; but I just couldn't help myself.

The episode was about the Coble's, a family of 5 from California - Mom, Dad, and three children, one boy and two girls all under the age of 6.  Driving home from an outing with her children, the Mom was hit from behind by a tractor trailer at full speed.  Two of the children were taken to one hospital, the other child to another hospital and the Mother to another hospital.  Dad was at work that day.  And the unthinkable happened.  All three children died.

Yes, the story is incredibly sad and tragic and horrible and every other emotion you can imagine.  But the show and the story focused on how the couple was able to bond together and try to put the pieces of their shattered life back together.  I know this sounds so stupid, but watching that show, I felt like they were speaking directly to me.  And that maybe God had a hand in making sure I watched that show.  I can in no way relate to the pain they have been through, but I can relate to their feeling of sadness, loneliness, and confusion.  And how important it is that Billy and I are in this together and work to stay that way so that we also don't become a statistic. They talked candidly on the show about counseling and sharing their grief in different ways. Exactly the same things that we've been through.

Now to share the miracle and happy part of the story!  Three months after the accident, the couple decided they wanted to have more children.  They had to go through fertility treatments to do so, but were blessed with not one, not two, but three babies!  TRIPLETS!!  One boy and two girls!  Amazing how God works in mysterious ways!

You can read more about the Coble's Tragedy and Miracle here:  http://www.oprah.com/oprahshow/Coble-Family-Miracle/1

For me, the Coble's are definitely an inspiration and I hope that I can find a way to share with them how much their story meant to me.

SDU: Special Delivery Unit

What I didn't mention in my earlier posts about CHOP was that we actually got a tour of the SDU while we were there!  Which was sooooo cool!!!  After we found out about Stephen's diagnosis, we canceled our "baby class" at the hospital where you get a tour of the labor and delivery wing of the hospital.  So we had yet to actually see what's goes on behind closed doors when the contractions begin.

Needless to say, we were BLOWN away by CHOPs SDU (how do you like those acronyms?!)!!

Little did we know at the time, but CHOPs SDU is actually the first of it's kind in the nation.  You can read a little bit more about it here if you'd like:

http://www.chop.edu/news/chop-brings-hope-to-special-babies.html

and here:  http://www.chop.edu/service/fetal-diagnosis-and-treatment/about-our-services/special-delivery-unit.html

It's an 8 bed labor, delivery, and recovery area located within the Center for Fetal Diagnosis and Treatment.  The first two rooms they showed us were their "small" rooms that they don't really like to use.  But let me tell you, those two rooms were larger than any hospital room I've ever seen!  And all 8 rooms are private and include a full size pull out bed for Bill plus a comfy glider for me (and private bath with shower..pretty standard stuff).  The rooms are meant to be a place for labor, delivery and recovery, so you never have to be moved around.  And get this....friends and family are welcome 24 hours a day, 7 days a week.  That's unheard of in a hospital!

But the best part about the SDU is how they handle the babies once they are born.  If I'm able to have a vaginal delivery in a regular room, Stephen will be checked out and weighed right away in my room and then immediately handed off to a team of neonatologists and doctors who will be waiting in the room next door.  But what's so cool, is that the rooms are separated by a frosted window.  Just like the windows in your house.  So the doctor's won't be interfering with the labor and delivery, but will be able to perform their miracles and do what they need to do just a short distance away without us having to see and/or hear what's going on.  It will make it easy on Bill since he'll be able to really check on me and Stephen at the same time (and still take pictures of him being weighted and cleaned up), but still be separated from the things we don't want to see.  But in case things don't go so well, he'll be right next door to us.  I think it's totally genius! 

And then once Stephen is stabilized, they'll bring him back in my room to spend some time with us before he's taken downstairs to the NICU.

Of course if I have a C-section, things will be a little bit different, but the operating room is located right outside of the SDU, so all three of us will still be close. 

Plus the Unit is staffed with midwives, nurses, lactation consultants, and doctors to help us through every step.  I think we'll need a lot of that since we have no idea what we're doing!! At this point, I think we'll just figure it out as we go.

Happy Monday!
XOXO
Lindsey

Hope Lives Here, Part 2

The second part of our day at CHOP was meeting with doctors for consultations.  Our schedule indicated that we were to have a consult with an MFM - maternal fetal medicine doctor, and then with Dr. Bernard Kaplan, the pediatric nephrologist, but we actually ended up meeting with both at the same time and with the geneticist.  Dr. Julie Moldenhauer, the MFM  began speaking with us first about Stephen's lungs and heart.  Most of what she told us we had heard from the other two MFMs, but she also told us some new information about his heart.  The ECHMO revealed that there is a some fluid now around his heart.  It's likely caused by the space issues in his chest and abdomen.  Because the kidneys are taking up so much room, it's pushing the diaphragm up and causing some fluid to gather around the heart.  And Dr. Moldenhauer explained to us that in normal babies, you should be able to fit 5 hearts in the chest cavity.  In Stephen's case, you would only be able to fit 2-3 hearts.  This is another function of the compression of the chest cavity.  But the good news with the heart is that it is functioning exactly as it should.  The four champers, valves, and arteries are all working great.

The other "new" news we heard from Dr. Moldenhauer was about Stephen's limbs being constricted.  I think I might have described before that without amniotic fluid, Stephen is kind of shrink-wrapped by the placenta.  That is what is constricting some of his chest growth.  And because he's "shrink-wrapped by the placenta, he's really tucked in there very tight and his movements are more sharp and it's not as easy for him to move his arms and legs.  Because of that, he might require some extra attention once he's born.  Hopefully that will only be physical therapy, but it could be surgery.

As Dr. Mondenhauer was explaining some of these things to us, Dr. Kaplan came in and the conversation turned to focus on his piece of the puzzle.  Dr. Kaplan knew that we had already met with a nephrologist, so he seemed a bit skeptical as to why we were at CHOP.  Which at first set me on edge on a little.  His first questions to us where:  1) what did the nephrologist already tell us/what do we already know, 2) why were we there, 3) what were our occupations, 4) what were our ages, and 5) do we have other children.  All are fair questions, but right off the bat, I got a little worried.  Basically we told Dr. Kaplan that while we had gotten great information from Dr. Kher from Children's National, we were still looking for a place that would give us comprehensive care for both myself and Stephen and that had seen cases similar and patients similar to us.  After that Dr. Kaplan seemed to relax his questioning a bit and told us about all sorts of different families and children he had treated over the years.  All were successful stories except for one.

So our conversation continued about dialysis, transplants, quality of life, and what would happen in the NICU.  And by the end of our conversation, I think all 5 of us were on the same page.  We know that the road could long and bumpy through the NICU, dialysis, and transplantation, but we also know don't know what will happen.  Dr. Kaplan talking about different cases were he swore the baby would need dialysis right away and then in the end didn't even need dialysis.  It was so great meeting with doctors who told us honestly they didn't know what would happen after Stephen was born, but no matter what happened, the team of doctor's could handle it and would make decisions based on what Bill and I wanted and what we thought was best for our baby in that moment.

We also chatted briefly about our choice to either relocate and deliver at CHOP or to stay here at home.  The decision is definitely a really tough one.  It will be hard for us to be away from home for so long; both emotionally and financially, but we are 110% sure that CHOP will give Stephen and I the best care.  They do have social workers that will work with us to help set us up either at the Ronald McDonald house or in an apartment near by.  And its not only hard for Bill and I, but it's also a burden on our families.  So we are going to try our best to keep our thoughts about CHOP in the back of our minds when we go to Fairfax this coming week to meet with a pediatric nephrologist.  We know that if Fairfax can offer us the same level of care and have dealt with cases like ours in the past, then we should choose Fairfax over CHOP, so that we have the comfort of home and our dog, and family and friends nearby. 

But CHOP is going to be hard to beat!!!  It was an amazing place and I can totally understand why they have chosen the slogan, "Hope Lives Here."  Each and every person we came across that day was friendly, supportive, and exuded the confidence (in a good way) that they can help us and give Stephen the best chance at survival.  And that's all Bill and I have been looking for. 

Our goal is that by Thanksgiving, we will have made the decision where to deliver.  If we decide on CHOP, I'll go every two weeks for a check-up with the high-risk OB/GYNs, we'll get a tour of the dialysis unit to have a better understanding of what it all entails, meet with the neonatologists, and then we would move to Philadelphia around Christmas to wait out Stephen's arrival.  It sounds like a lot, but we're excited CHOP turned out to be everything we had hoped it would be!

XOXO
Lindsey

Hope Lives Here, Part I

Well as you all know, we were up in Philadelphia yesterday at Children's Hospital of Philadelphia (CHOP).  Our day started at 7 AM at the hospital so we drove up Tuesday night after work and stayed in Philly for the night.  On our way through the city to the hotel, we noticed that the light poles around City Hall had banners that read, "Hope Lives Here.  Children's Hospital of Philadelphia" and we even saw a billboard on the way into the city with the same slogan.  When I saw that billboard and the banners, I just knew that we were going to have a good day at CHOP.  I only wish I had gotten a picture of one of those banners.

The day was an extremely long one, so I think I'll break it down into two parts so I don't bore you to death!  Part I - the tests and Part II - the consult.

Part I

Like I mentioned before, the day started bright and early at 7 AM.  CHOP is located on Penn's campus and is surrounded by other medical facilities and hospitals.  It's definitely where you want to be if something goes wrong health-wise!  And at 7 AM when we pulled in, the place was already buzzing.  We were told to go to the Wood Center at CHOP, 5th floor to the Special Delivery Unit (SDU).  We soon found out, that SDU would be our homebase for the day.  Every single person we came in contact with at CHOP from the registration lady to the doctors, were so nice.  We checked in, filled out some lengthy paperwork (were even offered breakfast!), and then met briefly with our "quarterback" Stefanie, the genetic counselor.  Stefanie already had a whole binder specific to our case with our records and everything and was up-to-date on everything we had been told and been through.  She gave us our schedule for the day and explained what each appointment would be.  Our schedule was as follows:

• 7:45 AM - Ultrasound
• 9:45 AM - Genetic Counselor
• 10:00 AM - ECHO (ultrasound of Stephen's heart)
• 11:00 AM - Insurance/Billing Consult
• 11:30 AM - MRI
• 1:30 PM - OB/MFM Consult
• 3:00 PM - Nephrology Consult

A few minutes later, we were whisked away to the ultrasound; all in the SDU.  The radiologist was really great and explained a lot to us and we were able to get a really good view of Stephen's kidneys.  He also explained to us that the kidneys should be about the same size as the baby's gestation age in centimeters.  So since I'm 29 weeks pregnant, his kidneys should be somewhere between 2 and 3 cm.  Stephen's kidney's are over 5 cm.  And he showed us some of the cysts that are visible on his kidneys.  The radiologist did a head to toe scan of every single organ, limb, finger and toe.  And it was a long process!  Because there's no amniotic fluid, it's really hard to see things and the baby isn't able to really move and extend his limbs, which makes it even harder to get a clear picture of everything.  In total, the ultrasound was a whopping 2 hours!

From there we went down the hall for the ECHO ultrasound.  What was so cool about the ECHO ultrasound was that the doctor's were watching the monitors from across the hall in another room, so the results were instant.  And if they needed to see anything else, that could be done too.  This one was pretty boring to watch because we had no idea what we were looking at and I actually snoozed a little while the radiologist did her thing on my belly.  The ECHO was about an hour.

Then we went back to meet with Stefanie to chat some more about our family health history and then it was off for my MRI.  By this time it was about noon.  I had had an MRI before, so I basically knew what to expect, but it was strange being in the MRI machine pregnant.  Between the vibrations of the machine and the loud pounding (and maybe the sugary fruit snacks I had...I got a little lecture from the MRI tech lady about how bad fruit snacks are for you, but a pregnant lady has got to eat!!), Stephen went absolutely nuts during the MRI!!!  It felt like he was going to jump right out of my skin.  Between him moving like crazy and having already been laying on my back for hours that morning, it was a tough 45 minutes in that machine aka "the coffin."  But we got through it unscathed.  The basic jist of the MRI was to get some good images of Stephen's chest cavity.  I think I was probably their biggest and easiest patient of the day though.  They don't usually see adults, since it's a pediatric hospital.  And the poor little kiddies have to be sedated most of the time because it's so scary for them.

Poor Billy, during all of this he had to just sit there and watch.  I can only imagine how tired and uncomfortable he must have been throughout all of those tests.  But he was a real trooper!!  At least I was able to lie down and actually close my eyes a bit even though I was being rolled back and forth and back and forth during all the ultrasounds.

After the MRI (it was now 1pm), we took a 30 minute break for lunch in the cafeteria and then it was back to the SDU for our consults.  More on that later!! I like to keep you in suspense! :)

Weekend Recap and Happy Halloween

Don't have much new to report today, so I'll post another pic for your viewing pleasure.  Here's our little girl (Mabel) in all her Halloween glory from 2008 doing some trick-or-treating in Old Town Alexandria.  She was just 3 months old in this picture.  Mabel is a true mutt.  She's definitely a corgi/basset hound mix, but I also think she might have some Jack Russel or Shepard in her too.  Next year we'll have both our little girl and little boy together all dressed up!!

The weekend was pretty low-key for us.  Although not having much to do on Saturday turned out to not be so good.  Bill went golfing for most of the day on Saturday (which was really good for him and I'm glad he went), but I didn't have any plans except to wait for Home Depot to show in the morning to install a new storm door on the condo.  After that, I spent some time catching up on Tivo (I'm an Oprah and Bravo junkie) and then trying to figure out what to do.  I ended up baking some pumpkin cookies which we took with us to a friend's house that night to watch the PSU game, but it was really hard being home alone for so long and left me with my thoughts, which of course tend to be pretty sad.  Plus, this past weekend was supposed to have been our "mini babymoon" to The Greenbrier (yes, you're allowed to make fun of me for that).  We were going to get away to relax and have some fun before Stephen arrived.  I was so looking forward to yoga, the spa, and a little gambling at night.  And I know Billy was psyched about golf and gambling too.  But after getting the news about the baby, we decided it would be more wise to save our money for Stephen's medical bills.  But I was really happy we decided to go over to see some friends Saturday night.  It was definitely a welcome distraction!! And PSU won, which made the night even better.

Sunday was much better since we had all sorts of random errands to run and had brunch down in Shirlington, which I LOVE to do.  Nothing is better than the newspaper, coffee, and eggs on a Sunday with your favorite person!  But next weekend, I think we'll try to get out of town (maybe to York) or plan something for at least the day on Saturday; especially since Saturday was supposed to be my baby shower.  I think next Saturday will definitely be another tough day for both Billy and I, but if we can plan something to distract us, I think we can make it through unscathed.

If anyone has any good suggestions for day trips from the DC area, I'd love to hear them!!

Go State!

In the hopes that PSU pulls out a win today against the Michigan Wolverines, here's a recent photo of Bill and I at the Penn State Homecoming game three weeks ago.

And I wouldn't be a good wife if I didn't also say, "Go Cocks!!"  Hopefully the South Carolina Gamecocks will also pull out a win today and all will be happy in our household.

Hallelujah!!

Today was an excellent day!! First of all it's Friday.  There's no better day than Friday in my opinion.  Yes, we still have to go to work, but the whole weekend is ahead of you.  And I don't know why, but I seem to be more productive on Fridays.  Anyway, the real reason today was an excellent day was all because of Dr. Kanwal Kher at Children's National Hospital in DC.  Since we found out about Stephen's kidney's, he has been the very first doctor to actually give us any hope and offer treatment options.  During our meeting today with Dr. Kher, we talked about how critical the first few hours will be in the NICU for lung development but that if we make it past those first few hours, we'll immediately start dialysis and then go from there as things progress.  The worst case scenario in terms of the kidneys is that they will be so enlarged that they'll have to be removed within the first few days of life to allow for extra room for the lungs to develop.  But that's ok.  He can still survive on dialysis with no kidneys until he gets big and strong enough for a transplant.  And then hopefully Bill or I or another family member will be a good match and Stephen can get a kidney from one of us.  Apparently they have much more success with grafting the donor kidney when it comes from a family member versus a cadaver. And I know Bill is really hoping that he'll be the match!!

We understand and know that being on a respirator coupled with the dialysis is not easy and brings with the possibility of infections and other complications (not to mention our lives will totally change), but Dr. Kher has dealt with this many times and gave us numerous examples of cases where children had their kidneys removed or went on dialysis all coupled with the lung issues, and have gone on to receive new kidneys and are now healthy young adults. 

What was even better today was that Dr. Kher actually recommended that Stephen's kidney care be passed off to Dr. Fildes at Fairfax Hospital, who can provide the same level of care as he would and then at least we can deliver, recover and be at Fairfax Hospital with him the whole time.  They don't actually deliver babies at Children's National, so Stephen would have to be stabilized first and then transferred via air lift downtown to Children's.  So not only was he a totally compassionate doctor to our plight, but recommended what he thought was going to be best for all three of us!!!

I called our contact today at Children's National, Lisa Cantu-Parks, who has been amazing and set us up with Dr. Kher, and told her I would tell anyone and everyone I could about how incredible Children's was to us.  Especially after the day we had yesterday, I can never thank her and Dr. Kher enough for their compassionate support.  So...if anyone finds themselves with some extra cash and is looking for a good place to donate...might I suggest Children's National Hospital? :)  haha, just kidding.  But not really. :)

And also just wanted to say how grateful Bill and I are for the outpouring of love and support we've received from everyone over the past week and a half.  We have truly appreciated every single email, phone call and connection that you have sent us.  Words really can not express how grateful we are to you all.  I know we've missed responding to some emails and calls, but we really do appreciate each and every one of them.  Your thoughts and prayers are what is keeping us going each day.   And I know they will continue to keep us going through the long and tough road ahead.

Much love,
Lindsey

p.s. Happy Halloween and hope everyone has a wonderful weekend!

Bad Day in Baltimore

Today was our "second opinion" appointment with another MFM up at University of Maryland Medical Center (UMMC) in Baltimore.  We had heard great things about UMMC from our first MFM and from another ARPKD Mom whose son was born, treated, and had a transplant at UMMC.  So going into our appointment today we were pretty hopeful that Dr. Harman would have some hopeful news to offer us.  Maybe there would be a procedure we could try in utero, some additional tests, or maybe he would suggest that a team of doctors at UMMC would take us on and we would ultimately deliver at UMMC.  We just didn't know.

Unfortunately, we weren't prepared for the news we would get from Dr. Harman...at all.  I mean you would think we would be prepared for the worst, since we've already heard the worst, right?  Oh so wrong.  Adding more medical information to what we had already been told made the news and the probabilities against us even worse.  Basically today went something like this:

- high level sonogram with radiologist; this was a pretty long one and I had some trouble during this sonogram.  She had me pretty much flat on my back today and I kept getting lightheaded.  Plus she had some trouble getting a good look at Stephen's heart, so it took a bit longer.
 - wait for Dr. Harman and wait and wait and wait some more.  Our appointment was at 10:15, we didn't see Dr. Harman until around 12:25pm.  What is up with that?!?!  Why do doctor's all seem to schedule appointments for a certain time, but then you don't see them until 30 minutes after your appointment time?!  Ugh.  So frustrating. But I digress. 

The consultant with the doctor began with a discussion about the lungs and the news was really bad.  The lungs are measured (with some complicated medical measurement) starting at 1.0.  At 1.0 there is no chance of survival.  At 1.6, the baby has a pretty good chance of survival as long as the level of care is really good.  But the baby still faces A LOT of challenges.  Stephen's measurement was 1.2.  And this won't change.  As he grows, his organs like the liver and heart, limbs, and head will continue to grow, but his lungs won't. Steroid injections, which are often given to mother's who might go into pre-term labor, won't help either because Stephen's lungs are actually already mature.  They just won't get big enough.  There's not enough room in his chest/rib cage cavity for them to grow because he's so compressed in my uterus without any fluid.  In technical terms, steroids help Type II lung cells develop and we have plenty of Type II cells.  There just isn't any room for them to grow.  And without functioning lungs, the kidneys then become a secondary issue.  We didn't even really get into the whole kidney thing.

The only somewhat positive thing that we gained from the appointment is that there is a blood test we could do in utero which would tell us 100% if the kidney defect is a chromosomal defect such as trisomy 13 or 18.  Meaning that Stephen could have a third copy of chromosome, instead of two, that caused the kidney defect.  The blood sample is taken through the placenta from the umbilical cord.  Dr. Harman has done thousands of these tests and has never had one adverse effect, so there are (really) no risks involved.  If it turns out that Stephen has a third chromosome, then there is nothing we can do.  No amount of medicine, no doctor, or miracle would fix him.  Instead we would comfort our little guy when he is born as best we know how and help him peacefully enter Heaven.

But if the test comes back negative, than it isn't a chromosomal defect, and we would continue searching for doctors who think that modern medicine could help our little boy.  Dr. Harman was obviously not that guy.  He doesn't want to take on our case and doesn't think there are any babies, ever, who have been in our exact situation and survived.  But we don't agree.  No one has been able to say they know 100% that our baby won't survive.  Maybe his chance is 1%, but that's still a chance.  If the blood test proves differently, than that's a different story.  But until then, we're continuing our search. 

So all in all, today was a pretty shitty day.

Hopefully tomorrow will be better with the pediatric nephrologist.  But I fear every appointment will be like the last.  Let's hope I'm wrong.

Genetics aka Really Confusing Stuff

Monday morning we met with the pediatric geneticist to try to determine how Stephen got ARPKD and then ultimately what the probability that future children might be affected by ARPKD.  Most of what the doctor told us has kind of left my brain at this point, but I know it will be here job to decipher the genetic test results and give us a "final answer" when the time comes.  To be completely honest, the only thing I really remember is talking about the blood test we need to have done, going through our family health history, and then leaving pretty deflated.  She did say though that are now procedures where the mutated gene can be isolated in both my egg and Bill's sperm and than can be re-planted to try to avoid future children from being affected by ARPKD.  Sort of like in vitro fertilization.  But that is like a million steps ahead of where we are right now, so I've kind of let that fly over my head for right now too.

But here's some information I found helpful in trying to better understand how ARPKD could have been passed on to Stephen and some more background information on the disease for those who are interested.

ARPKD (Autosomal Recessive Polycystic Kidney Disease) occurs in approximately 1 in 20,000 newborns and children. 30% to 50% of infants with ARPKD die at birth or shortly after (this is mainly due to under developed lungs). Children who survive the newborn stage face many challenges including high blood pressure, lung issues and kidney/liver failure. Approximately one third of children with ARPKD will need dialysis or kidney transplantation before the age of 10.
A child inherits ARPKD when both parents have a copy of the disease gene. Since the parents each have only one copy of the disease gene, they do not have the disease and are referred to as "carriers". Two parents who carry the ARPKD gene have a 25 percent chance that each child will inherit the disease.

 Here is an excerpt from the most frequently asked questions about ARPKD:
(The full list can be found at http://www.pkdcure.org/)

Q

What is ARPKD?

A

Autosomal recessive polycystic kidney disease, ARPKD, is a rare genetic disorder, occurring in approximately 1 in 20,000 individuals. It affects boys and girls equally and often causes significant mortality in the first month of life.

If the child survives the newborn period, the chances of survival are good. For these children, approximately one-third will need dialysis or transplantation by the age of 10.

Q

What causes ARPKD?

A

In recessive disorders such as ARPKD, the child must inherit a copy of the disease gene from each parent in order to be affected. Since the parents each have only one copy of the disease gene, they do not have the disease and are referred to as “carriers.” For carrier parents, there is a 25 percent chance in each pregnancy that both copies of the disease gene will be transmitted to the baby.

Q

What is the kidney problem in ARPKD?

A

In ARPKD patients, small cysts form in the last section of the nephron called the collecting tubule. A cyst is a balloon-like widening of the tubule. In ARPKD, the abnormality always involves both kidneys. Due to the numerous nephrons with small balloon-like dilatations, the kidneys can become quite enlarged. In addition, the normal function of the collecting tubule is disrupted. In the normal kidney, the collecting tubule fine-tunes the amount of water and acid in the tubular fluid so that the body retains an appropriate amount of water and eliminates excess amounts of acid. In ARPKD patients, the cystic collecting ducts cannot retrieve water efficiently, causing much more urine production than in children with normal kidneys.

For ARPKD patients, the size of the kidneys and the degree to which their function is abnormal depends upon how many of the collecting ducts are cystic. For reasons that are not completely understood, the majority of ARPKD patients have a progressive loss of kidney function. However, the age at which kidney failure develops varies greatly among patients.

Q

Are only the kidneys affected in ARPKD?

A

ARPKD affects both kidneys and the liver. Affected children may have significant kidney involvement at the time of birth, meaning very enlarged kidneys and decreased urine production. In utero, urine production is a critical factor in maintaining normal amniotic fluid levels. When amniotic fluid levels are very low, lung development can be impaired. In some newborns with low levels of amniotic fluid, impaired lung development can result in serious breathing difficulties that ultimately can cause death.

Children with ARPKD often produce very large volumes of urine and must urinate much more frequently than children with normal kidneys. Given the kidney abnormality, urine production in ARPKD children does not slow down at night or even when liquid intake is limited.

About one-third of children with ARPKD who live beyond the newborn period will require dialysis and kidney transplantation by 10 years of age. High blood pressure is very common in children with ARPKD, and current information indicates that untreated high blood pressure can lead to kidney failure more quickly than if the blood pressure is kept within the normal range with medications.

Children with ARPKD also have the liver abnormality called congenital hepatic fibrosis that may lead eventually to enlargement of the liver and spleen. In the liver, the abnormality can impede the return of blood from the intestine to the liver. This condition, called portal hypertension, can lead to distention (varices) and increased pressure in the veins around the esophagus, the stomach, and the intestine. These varices can rupture, leading sometimes to life-threatening gastro-intestinal bleeding. In addition, portal hypertension can cause splenic enlargement and hypersplenism, with resulting low red blood cell, white blood cell and platelet counts.