Is she starting to look like Beth or what??

Happy 4th from Prospect Park!

Happy to Be at Home

Yesterday was one of the longest days of our lives but we are home now and everything is pretty much fine. We arrived at the hospital at 7 am and they did not start the procedure until 2 pm! It was criminal to have us wait so long especially since Susannah could not eat or drink anything in preparation for the anesthesia. We passed some of the time in the children's garden behind the hospital. She's pretty cheery here but as the day dragged on we are all quite unhappy.

The nephrostomy went well and there were no complications. We go back a week from Tuesday and basically repeat this whole procedure. She'll be under anesthesia again and they will insert a wire into the tubes to get a better look at what's preventing the urine from draining completely. It seems that the problem is still at the bottom of the ureters, which is kind of a good thing because it is more likely that the obstruction is due to swelling that will eventually subside. So we wait and see..... what else is new. If they make us wait that long again they will have to call security because I will resort to physical violence.

Until then, we are dealing with these bags. Almost all of Susannah's urine is now being drained into these bags outside her body. We can detach them twice a day for an hour at a time. Our job now is to devise ways to keep them out of her way and out of her mouth.

She was pretty miserable yesterday but fortunately today she is acting completely normal -- eating solid food, drinking milk, nursing, crawling and wanting to be walked. That is such a huge huge relief to us all. It's possible that having all this pressure off her kidneys will make her feel even better.

In the meantime she looks like a Guatemalan kid since the best device to keep the bags out of her way seems to be this scarf that Ben got me when we were near Tikal. (That was in 2003 when we were oh so young and carefree. But maybe S would like to go there someday....)

Good news, Good news, Bad news

Good news: This is the sight that greeted me when I went to get Susannah out of bed this morning. She was standing up in her crib all by herself for the first time! Her physical strength and her interest in movement has improved so much over the past eight weeks. And, a weight check at the pediatrician today has her at 17 pounds, 10 ounces, her best yet.

Good news: Darling Ben received a great job offer today. We haven't said much about it here, but he left his job back in March and if not for Barack Obama and the federal stimulus package's subsidized health insurance, we would be living in one of our parents' basements and totally overwhelmed by Susannah's medical bills. Instead Ben has been working like a dog to find another, better job and today he accomplished just that. He'll be working as a writer for an international nonprofit called The Hunger Project. The work is more creative, the commute is shorter and best of all, his supervisor is a Prescott College graduate! Or maybe best of all is that the job includes health insurance for the whole family -- the exact same health insurance that we've had for the past two years. It's such a relief, and enough cannot be said about how hard Ben has worked, how frustrating it has been, and how awesome it is that he will be taking a job that he is (1) excited about and (2) will give his family some stability. Ben, you are my hero.

Bad news: Though Susannah's behavior indicates she is feeling much better, her kidneys are still extremely dilated. The pressure on the kidney tissue (created by the hydronephrosis) continues to be just as bad as it was before the surgery according to our last two sonograms. It could just be temporary swelling from the surgery, but our urologist is concerned. So tomorrow morning we go back to Columbia Hospital, where Susannah will undergo a procedure called a nephrostomy. Tubes will be inserted through her skin and directly into her kidneys. They will drain the urine and take the pressure off the kidneys. She'll be under general anesthesia and we may have to spend the night in the hospital.

How long the tubes stay in and what happens next depends on what they find when they insert the tubes and run a few tests. The only good part about all this is that her blood work continues to show that her kidneys are functioning well. The danger is that that could change if the pressure on the kidneys is not relieved soon.

I'm being sort of general because it is confusing what is going on and what has been going on since we first got this diagnosis a year and a half ago. Everything varies; everything is one step at a time. We know she feels better than she did three months ago. We just have to get through this next procedure and go from there. Yes, we are frustrated. Yes, we are exhausted. Yes, it could be much worse.

I mean, how adorable is she?? Look at how proud of herself she is, and we are too.

Baby Swap

This week somebody took our baby in the middle of the night and replaced her with one who eats solid food. This new baby also answers to the name Susannah, and she eats three meals a day. Fish. Chicken. Pasta. Avocado. Waffles. Soy yogurt. And many other things. She also drinks soy milk from a "tippy" cup, points at random objects and waves to strangers on the street.

I don't know if it was all the quality time with Moonpie and Auntie A-Lo, or the visit to the allergist and dietician, or maybe just the general sense that Mom's boobs (and Mom) were wearing out, but this new baby is a lot of fun. We think we'll keep her.

Susannah and her Dad

I guess since it was Father's Day weekend, Ben decided he could do whatever he wanted so he gave Susannah a haircut. I was thinking it would be a tiny little trim since her bangs were getting in her eyes a bit. But he goes and cuts like a whole inch! Maybe more! And it is not at all even!! He thinks it looks cool, like some sort of Scandinavian hipster baby haircut. I think it looks exactly like the kind of do I used give my babydolls when I was like five years old.

S was not into it at first.



















Then she gasped and was all, "What did you do to my soft downy beautiful baby hair?!"



















Then she thought, "I'm a baby, who cares."




















In other news, the crawling is on! She really seems to enjoy being on the floor and is getting stronger every day.



























Having fun with Dad, though the next haircut will be left to the scissors of a professional. Mom's orders.

Geez Louise

Despite S's cool demeanor, it's been kind of a rough week for the Aplin fam. Friday Susannah woke up in the middle of the night with a high fever. Our doctor thought she might be getting the flu and prescribed Tamiflu, which she promptly threw up (twice). Over the weekend the fever came down and congestion set in. She seems better today but is coughing up a lot of mucus and has had hardly any solid food in six days. (Except for the time when I was asleep and Ben tried to give her some hummus which has sesame in it which she is allergic to, so the Benadryl had to come out. Good times.) We have her one-year checkup tomorrow so we'll make sure that she's improving.

Today we celebrate our 4th anniversary, and Ben is feeling sick. I had it for about two days and now it is his turn. I don't think we have the flu -- despite the worldwide pandemic. I think we'd be feeling a hell of a lot worse if it really was the flu.

It's a bummer because Susannah was on an awesome upswing before this latest bug. She gained about 3/4 of a pound in three weeks and was eating all kinds of food and started to crawl! We just hope that soon she'll be back to 100 percent so she can resume kicking ass and my blood pressure can go down.

Here's a few more pics from Chattanooga. First swim with Daddy. She liked the water but hated the glare in her eyes. (This was before she got two awesome pairs of sunglasses for her birthday.)






She didn't much like blackberries but she really liked smashing them on her head. Hope this one isn't too gory for folks.





Chillin on the front porch during a visit with Ibbe, one of her great-grandmothers.




Hopefully this weekend we will be able to get out and have some fun. It's bye-bye for now from the House of Phlegm.