Sunday, October 26, 2008

Busy hands, feet and toes

Busy week here. Ben went out of town on business for three days, our nanny decamped for Grenada and we don't know if she's coming back, and
Beth has an exorbitant amount of school work due. Susannah has been busy too, mostly grabbing stuff and trying to put it in her mouth and/or throw it on the ground. We were told this day would come and lo and behold, here it is. Observe below:

Friday, October 17, 2008

The faces of Susannah at almost 5 months

The "had a good nap and had a good snack" face

The "I am tired and sick of photographs" face

The "hey youse guys get outta my way I'm in a hurry" face.

The quintessential Susannah face. Still trying to decipher. Maybe something along the lines of "and I should pay attention to you because..."

The "this towel is fun but not delicious where's my snack" face.

The "ugh Paparazzi" face.

The "Yo can you check out my blog on that thing" face.

The "MOM you're embarrassing me" face.

The happy baby face!

Friday, October 10, 2008

On to the Next Episode

Susannah seems more and more like her old self. She is laughing more, nursing better and her incisions are getting smaller and less scary looking. We've been using maxi pads to keep the urine from seeping out of the sides of her diaper and they are working really well. If anyone asks us what they are for though, we will just say that she is very mature for her age.

I even went to my class on Thursday afternoon. (Grandma Moonpie was more than happy to babysit.) I wasn't sure if I should go but I am so glad I did. My brilliant professor gave a lecture on Comedy and Tragedy. Apparently, comedy --serious comedy as well as funny haha comedy-- is about the continuing of life. The comic figure's main interest is in continuing. He comes up against chance, gets knocked down, and finds a way to adapt. He may be worse for the wear, but he recovers and moves on.

The point of comedy is you can plan until the cows come home, but it won't solve the problem at hand. An unknown fortune is coming at you, no matter what. Your attempt to control all of it is seen as funny.

Wit, imagination and thinking on one's feet are all typical of the comic character. It is an intensified version of what we (hopefully) feel in life.

So, basically, most of us are starring in our own comedy. I think that is a relief, don't you? If anyone wants to buy the rights to mine for a nice seven-figure sum, you should give me a call.

Here is Susannah this week with some of her favorite fans and favorite toys.

Finally she acknowledges the toys on the chair and smiles for the camera.

She tolerates reading.

The blue ring = five minutes of endless intrigue.

Anyone have ideas on where the furrowed brow comes from?

Nobody makes her laugh like her daddy.

Tuesday, October 7, 2008

We are Home

The residents came around early this morning and were so impressed with Susannah's progress that they let us come home! She has two incisions along her bikini line that are about one inch long each, and both are healing very well. She does not seem to be in pain. She is a little grouchy but I think we'll let that slide.

Thanks again for all your love and for checking up on us. My mom is here and she's been a huge help. And, thanks to her all her grandparents, Susannah now has a closet full of new clothes for when she's feeling better. Photos to come!

Monday, October 6, 2008

Recovering nicely

After almost 4 hours in the OR, susannah, our hero, just nursed for 20 minutes and is doing well. Thanks for the good wishes and phone calls.

Friday, October 3, 2008

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.

Wednesday, October 1, 2008

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.