Surgery Set for Monday

Our urologist says she knows exactly what to do and that she'll sleep better when it's done.

The MRI shows that Susannah's ureters need a new bottom end. They are tapering off at the bottom, meaning they are too narrow to properly pass all her urine. The constriction is causing the dilation which is compressing her kidney tissue which threatens her kidneys' long-term growth and function. Make sense? Good. Pop quiz next week.

The dilation is severe in both kidneys--not just the left one-- and no one wants to let the kidney tissue thin any more than it already has. So what will happen is Monday afternoon, Susannah will have a procedure called a low ureterostomy. The gist is that the bottom of her ureters will be opened up and brought out through her abdominal wall. Her urine will be expelled via two small incisions in her groin. She won't have to wear bags or anything to collect the urine; supposedly it will flow into the diaper just as it does now.

The procedure basically diverts urine from her bladder. Apparently, simply repairing the ureters and reattaching them to the bladder is too risky at this age. When Susannah is about 1 1/2 years old, they will go back in and reimplant her ureters and deal with her bladder.

I know this all sound a little freaky. I'm getting a little freaked out just thinking about it. However, as surgeries on babies go, this a very safe and successful procedure. The recovery time in the hospital is only 1-2 nights. We saw our pediatrician today and he reassured us that all this was merely a plumbing problem that can and will be fixed. Make no doubt about it -- Susannah will still be able to R-A-W-K!

Tomorrow we have to go to NYU to get her pre-operative blood work done (another needle, fun for the whole family). Then Monday we get to do the whole starving her thing again, so Ben and I are trying to see if we can get Susannah interested in apple juice over the weekend. But by Tuesday or Wednesday, we could be home, and by this time next week it could all be a distant memory.

Thanks everyone for your sympathy and good wishes! We'll check back in with you on Monday.

Speaking of distant memories, one year ago today we found out that I was pregnant.

Here's our little munchkin today. Ralph Lauren wants to hire her but instead she'll be on the cover of Urology Today.

Good to be Home

In the last post I was worried about Susannah being sedated for her MRI. It turned out that it was the most merciful part of the whole day.

On Tuesday our appointment was at 3 p.m. and I wasn't allowed to feed her after 10:30 am. (I could give her apple juice until 12:30 pm but guess who doesn't like apple juice?) It was pretty awful but Susannah--although looking very bewildered--held it together.

It got a whole lot worse when they finally called our name at 3:45 pm. One of the doctors felt she needed to be observed overnight in the hospital and wouldn't start the MRI until the paperwork to get her on the pediatric floor had been completed. We were told this would be an outpatient procedure so obviously somewhere someone screwed up. I'm crying, Susannah's really crying, even Ben is on the verge of tears and having pointed discussions with the NYU staff. (The word unacceptable was used several times at rising decibels.) Finally at 4:30 pm the paperwork is finished and they start the MRI by putting a little mask over Susannah's yelping mouth to put her to sleep. We couldn't see her again for two hours.

I don't know if I can describe to you what it is like to see your baby coming off an anesthesia. She looked so lifeless.... I really don't want to go into it. After about 10 minutes she woke up and I got to nurse her. She ate well, which was not easy considering that the heart monitor, catheter and iv were all still attached.

Luckily all that was removed once we got upstairs to the pediatric wing. It was a miserable room we were in with three other patients, one of whom was at least 16 years old and would moan I'm in pain, I'm in pain, every two hours, which would send in the nurses who turned on the lights which woke everyone else up. Ben left about 10 pm and I slept on a fold-out chair next to her crib. The one positive thing I have to say is that we had a nice view of the East River and the top of the Chrysler building.

The good thing is that Susannah woke up to feed every 2-3 hours, so she was hydrated enough this morning to be discharged. We got home about 10 am and have since been much happier. She was a little sleepy and grouchy today but otherwise is terrific.

We hope to talk to our urologist Thursday to review the MRI results and make a plan for the next step, which will probably be a surgery on her left kidney.

We hesitate to post this photo, but it is a fairly accurate representation of what little schnookums endured. She is a tough cookie, tougher than her moms that is for sure.














And here's a little reminder of what she's like the other 99.98 percent of the time.

Four Months Old and It Ain't Over til the Fat Kidney Drains

Before this week, battling baby eczema and baby dandruff were the top concerns here at the house of Susannah. Unfortunately we went back to the pediatric urologist for a routine sonogram on Monday and got some bad news. Susannah's left kidney had a big jump in dilation; they measured it at nearly 8 cm which apparently is much much bigger than an infant kidney should be. Her right kidney increased slightly as well.

If her kidneys were truly draining as they should, then the dilation (aka hydronephrosis) should be decreasing, not increasing. According to the tests that have been done, her kidneys have been functioning reasonably well, but the fear is that their growth and function will be compromised if we aren't more proactive. Our hope (basically my magical thinking) that her kidneys were shaped funny but working properly pretty much falls apart the more severe the dilation becomes.

The next step is an MRI, coming up this Tuesday afternoon. We were scheduled to go to NYU Hospital Thursday, spend the night and have the test Friday morning, but they called at the last minute and canceled. Now the MRI will be on an outpatient basis--no having to spend the night at the hospital--which of course is better for us.

The good thing is that the MRI gives the best possible look at her anatomy and they say it causes no side effects. The bad thing is that she will have to be sedated for the procedure. Yikes.

Our urologist published an article about the procedure in a medical journal. Check it out at http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1472682

After the MRI results, we are pretty confident that a date for surgery will be set for sometime in October. They will most likely operate on her left kidney first and then we will go from there. I don't know much about what the surgery would be like, but as it is explained to me I will do my best to process it in my very un-M.D. brain and pass it along to you.

So, yeah, the whole thing is a huge bummer. We had almost stopped thinking about her kidneys altogether and I am sure many of you did too. Keep in mind that all this is being done now to prevent really major problems down the road.

Otherwise Susannah keeps on trucking and growing and talking and kicking her legs up in the air (just remember honey you can touch your toys with your hands too). She's four months old today. Wow. One of these days I'll post something about the day she was born. A friend mentioned to me that we don't have anything about our labor experience on the blog and that is a good story worth sharing....soon.

But blah blah blah, how about some photos?



A rainy weekend but we went to the Botanic Garden anyway. They were having their annual Chile Pepper Fiesta and Susannah heard Pete Seegar singing "She'll Be Comin Round the Mountain." Maybe next year she'll have her first chile pepper.








Just fell asleep on mom's chest. She did this a lot when she was only a few weeks old but these days it's rare so we had to capture the moment. Look at that wittle mouth.










Baby Airplane in the window with Dad. With head control like that she'll be a pilot anyday now.














Finally she smiles for the camera! If this position was hurting her ribs, she'd tell us, right?

Beth and Susannah once again fly the unfriendly skies

It all began so smoothly this time! We had the whole row to ourselves on both legs of our journey to Tennessee. Just the girls this time--we flew down so Mom could participate in Lisa and Wade's rockin' wedding.

Since it was only a two-and-a-half day trip, we really had to hustle. Susannah had great visits with her great grandmother Mimi, two of her three sets of grandparents and one of her great aunts. Beth made it to the rehearsal and the rehearsal dinner, and then both of us went to the wedding Saturday night, with some help from Grandma Moonpie.

Tired and droopy, we flopped on the plane back to New York Sunday afternoon and didn't get home til midnight. Both planes were completely full, then we were delayed in Atlanta, then once we finally got to NY they kept us sitting on the runway for an hour because there were no open gates, and when we finally made it to the taxi line we waited for another 45 minutes because apparently everyone at the airport needed a taxi at the exact same time. Poor little S did a great job and had more patience than people 40 times her age. Beth gets points for not having a nervous breakdown.

Delta's suckiness aside, it was a lovely trip as you can see from these photos. Grandpa Jim took some beautiful shots as always. There's nothing better than putting Susannah in the arms of her family.

I didn't take any wedding photos though--kinda hand my hands full. Christie if you can send me a few as attachments I'll post them.
































































































One more thing--I was so close to catching Ben in the "who does Susannah look like" poll! But now he's beating me again. Who's out there rigging this thing?

Baby Airplane! and other accomplishments

Susannah has been working hard on head control lately and now we have the photo to prove it. She can now play baby airplane for like 2 whole minutes before she goes all wobbly.


















We are also excited to report that Susannah took 8oz from a bottle today - not from mom (pretty much impossible when the alternatives are right there), not from dad (who basically forces it in her mouth while she squirms) - but from Dianne! (our lovely nanny). We cannot possibly communicate the relief we feel. The thought of little schnookums going hungry while mom's at school is just too much to bare.















Susannah getting psyched up for another big day.




















Fun with dad after work.

Twiddling My Thumbs

Well, the baby's asleep and Ben's out of town and I'm not really sure what to do with myself. We had some good adventures this week; Susannah and I went to the zoo with Anna and her ensemble and to Trickle Up to meet some of Ben's coworkers. Ben's got the computer that we upload photos onto with him--he went to D.C. for some conference thingy--so no new photos for this post.

I do have something new to report: Susannah is learning how to get her fuss on. On the way back home to Brooklyn after meeting dad at work in Manhattan, she had a total meltdown on a very crowded Q train. Yes, for about 10 interminable minutes we were that couple with that baby. She's also frequently a very unhappy camper after her bath at night. She's in the tub, everything's cool, we're singing the bathtub song. But somewhere between getting wrapped up in the towel and into her pajamas, something goes terribly wrong and she scrunches up her face and wails for a while and not even the "How Much is That Doggy in the Window" mobile makes it better.

The fussing was distressing at first, but on the upside, it doesn't go on forever and it does seem as if she is finding her voice. Often times the cry has this babble quality to it, awah, awah, awah, a why do you do this to me when you know I don't like it, mwah, mwah, mwah. Clearly she is an advanced communicator.

Here's some shots from our Chatt. trip last month.

Quick Recap -- Labor Day Weekend

So my mom's been a little pissy with me since we haven't updated the blog in a week. Sorry mom! It's been pretty busy in Brookland.

We kicked off Labor Day weekend by dining al fresco at an Italian place near our apartment. Susannah's been conking out between 7 and 8 pm lately, so eating out is more tricky. We discovered though that all the cool kids eat dinner at 5:30 pm--seriously the place was crawling with strollers and brats who kept dunking bread in their milk-- but honestly I don't think it's a trend that Ben and I can adopt. Here's S being very patient with us.
















We had big plans to go to the Metropolitan Museum of Art on Saturday but instead we slept late, read the paper and hit our favorite neighborhood spots like the Brooklyn Botanic Garden. (Hey, that sounds just like what we used to do before we had a baby!) We've tricked Susannah into thinking that the Garden is her backyard.



















Finally, a family photo! We also went to the playground with the Thomases. S isn't much for swings yet but she let Anna take our picture. She makes that face a lot but what does it mean? I'm bored? I'm bummed? I'm over this whole family-bonding thing?














Monday was a big day. I started my graduate program at Sarah Lawrence with a full day of orientation, aka boring meetings and registration stuff. Ben was by himself with Susannah from 6:30 am to 6 p.m.! I hear they had a lot of fun and only a few tantrums. Here they are having breakfast.

Ben: "Getting her to take the bottle was a bitch."















Then they took advantage of mommy not being home by turning the living room into a recording studio. Susannah really wanted to here dad's version of Stairway.















Tuesday was Susannah's first day with her sitter, Dianne. We really like her and it seems they are getting along just fine. It's much harder on mommy, who got a little teary on the subway and who feels pretty unstylish hauling around her Pump N Style breast pump. C'est la vie.

Ok Moonpie! Now we're off the hook for a few days, right?