Friday, August 28, 2009

A Few Photos from the Summer

the hipsters on Washington Ave

They Might Be Giants concert in Prospect Park. Susannah doing her signature finger point, usually accompanied by her favorite syllable.

the photogenic duo

Wednesday, August 12, 2009

For the Love

Well. Reversal has been the theme around here since our last post. Susannah's nephrostomy tubes came out last week with the hydronephrosis in both kidneys showing significant improvement. Our old friend Anne was here for the weekend and Great (Aunt) Corinne arrived Sunday night.

Monday we went back for another ultrasound which unfortunately showed that the hydronephrosis was much worse than the week before. It was very disheartening and upsetting because we didn't know why. Was there another obstruction? A problem with her bladdder? Would they have to put the tubes back in? Corinne and S and I spent nearly all day at Columbia, going back and forth between the radiology department and the urologist's office.

By the end of the day it was confirmed that Susannah can empty her bladder normally, which rules out any weird bladder problems (thank god). By the next morning, we were headed back to the hospital for yet another operation/procedure/invention. Our urologist did something called a cystoscopy, and he inserted two internal stents between her bladder and kidneys. They will ensure that there is a clear path to drain the urine and keep the pressure off her kidney tissue. She'll probably have the stents for about two months.

It is still unclear why the hydronephrosis returned so quickly. She could be experiencing some reflux. Her bladder could need more time to get back into shape. We really don't know right now.

What makes this latest episode tolerable is that Susannah is doing totally awesome. We didn't know what to expect, but she sailed through the procedure. (I was able to go back with her in the OR while they put her to sleep, which is why I am wearing that stylish moonsuit in the above photo). She had about a two-hour recovery and was eating dinner and cruising around the apartment that very night. We are still planning to make our trip to Chattanooga this week as planned.

The other thing that has made the past three days tolerable is that Corinne is still here. She was with me both days at the hospital so Ben did not have to miss work. She has been washing dishes, walking Susannah around, paying for everything and just being a wonderfully calm and supportive presence. Thank you thank you Corinne!

See you guys in Chattaboogie -- Susannah is ready to party and I'm ready to rest.

Sunday, August 2, 2009

Little Monkey Starts to Climb and Cruise

Susannah has really had a good month despite everything she's been through with the tubes and bags and the zillion sonograms. She now weighs 17 pounds, 13 ounces -- a slow but steady improvement. This week one of the nephrostomy tubes will be removed and if things continue to go the way they are going then the second will come out a week later. Even though the tubes have been a good thing overall, we are so excited to get them out of her so she can take baths and go swimming and be a normal little girl.

One of the best things to happen lately are the changes in her physical strength. She started climbing stairs in Maine and ever since we got back she has been getting into all kinds of trouble in the apartment. She can pull herself up to a standing position and has started cruising around a little bit by holding onto various pieces of furniture (some more steady than others). Her face really lights up when she does these things and I think it is because she knows what a badass she is.

Under the table is a new favorite hangout.

And this is why I don't blog as much anymore. As soon as I sit down she attempts some MacGyver move. (That is Ben's toe.) Her physical therapist thinks she'll be walking by Christmas!

Saturday, August 1, 2009

Lots of Catching Up to Do -- First, Maine

We had two great days and one bad day during our long weekend in Maine. The great days were filled with lots of playtime for mom, dad and baby on the lake. S couldn't go swimming due to the nephrostomy tubes but she had lots of company. Many of the adults present were just as entertaining (though perhaps not as cute) as the babies.

The bad day occurred when S woke up from a nap with a fever over 103, which resulted in a trip to a lab at a nearby hospital to have her urine tested and the beginning of several doses of a serious antibiotic. The fever came down with motrin and the whole episode felt pretty manageable until our urologist thought it was important to keep her fever from spiking by alternating the motrin with tylenol. We reminded him of the hospital experience in which we weren't sure if it was the tylenol or another medication that gave Susannah an allergic reaction. But he said no no, it wasn't the tylenol, I've never had a child allergic to tylenol. So what do we do? We give her a dose of tylenol and within 5-10 minutes both of her eyes had nearly swollen shut. At which point I nearly had a heart attack. Benadryl saved the day though, and Carly and Alexia and Ben all helped me from going crazy.

Alas, no pictures from that particular episode, but plenty from all the good times.