Good things come in threes

So, we have a few things to report. We'll let Jocelyn report the first to those of you we haven't spoken with yet:


Yep, we are very happy to report that the stork is again on its way! Julie is due with our second on March 24, 2009. We had our first ultrasound about a week ago. Here's a pic:


In deference to the Peanut, Pepere has dubbed the little one the Cashew. As to whether it is a boy or girl, well, the ultrasound technician had a strong suspicion but said we should wait before painting any bedrooms, so I guess we'll keep that one close to the vest for a while. She did say that all signs pointed to he/she being a very healthy baby, and some blood tests Julie took also seemed to bear that out. We couldn't be happier.

In other news, Jocelyn finally gets out of her cast this Friday! Although she's been very easy-going throughout this whole experience, I get the sense that she is as ready as we are to be done with it. She definitely shows signs of wanting to move around, and loves it when she gets to come out for a little play time and a bath near the end of the day.

One other news item that falls a bit lower on the priority chain but is noteworthy nonetheless: we had a meeting with the town of Manchester about our house situation last week and learned that they would like to purchase the property. There are several hurdles yet to clear, as we have yet to settle on a dollar amount, and they will have to have a measure on the ballot at the Town Meeting in April to ask for the funds. We feel lucky, though, to even be potentially so close to a resolution, as municipalities are notoriously slow to move on things like this. Apparently they realize how good a case we have, and they also have a dire need for playing fields, so they would like to kill two birds with one stone. Works for us! If things turn out favorably in April, we may be able to spend the first few months with the Cashew enjoying his/her company rather than moving several times - how about that - and we may finally be rid of the ball and chain that the Manchester house has become.

Pics

Here are some pictures of the Peanut (aka the Pumpkin, aka Punky, aka the Punk, aka Punkette, aka Punkacita, aka Punkus Maximus) during her grand return engagement to the tub.

The facecloth is to cover her halo, of course.

Pretty sure she will not appreciate this one in about 12 years, but what the heck.

The Wave Machine is back in business!

The Waterbug Returns

Big milestone last week - Jocelyn went into a split cast, so now she can come out for a short time each day, start getting used to using her hip again, and have a bath. So far, so good. She is being reminded how much she loves splashing around in the soapy water with her rubber duckies, and doesn't seem to mind going back into the cast afterward to sleep. (I actually think she kind of prefers having her legs in the cast at this point, as she gets a little freaked out sometimes when her legs move into a certain position. I think it will take her some time to get used to having full range of motion again.)

The x-rays that were taken when the cast was split are promising - her hip seems to be in very good shape. The plan is to have her be in the split cast for four weeks, meaning that the cast will come off for good at the start of October, which is a few weeks before we thought. This is very good news for Julie and I, as neither of us particularly enjoys our "Dawn Patrol" duties of turning her and changing her diaper in the middle of the night.

Despite her being a little uneasy when her legs move a certain way, I think she really wants to start moving around. Just within the past few weeks she has really started shifting a lot in the cast, and she just started raising herself up on her arms to push herself backward. Good thing having a cast on her legs kind of naturally puts the brakes on - we have a ways to go before the house is completely baby-proofed!

Sea Legs

The Peanut made her first trip on a boat (to Nantucket) last week! Despite the cast, she had a great time hanging out with Momma and Poppa (and family and friends) at the beach and bopping around town. Here are a few shots from the trip:

Coming into the harbor on the ferry.

Showing off the fashion raincoat (a garbage bag) that Momma and Poppa fashioned for her when a thunderstorm broke out in town.

Showing her pat-a-cake skills off to Nana.

I like this vacation stuff!

She loved the Rody horse Grammy and Pepere bought her!

I think this might have been her vacation face. She had it going a bunch of times throughout the week, and then as soon as we got home, it disappeared.

Another procedure

Jocelyn went back in this Wednesday to have a new cast put on. Turns out after they sawed out the indentation that was giving her a pressure sore in the ER, they packed the hole with material that had a slightly irregular surface and also irritated her skin. So, to be safe we had her old cast taken completely off and a new one put on.

After the procedure was over we learned from the surgeon that her hip has already stabilized. We also learned that she will come out of the cast a bit earlier than we expected - sometime around Labor Day (she will then be in a split cast for about a month after that). So that's good news.

We will be very excited if this is the last time she needs to have surgery. The poor thing had a tough time coming out from under anesthesia, and of course it's not so easy on us either. We are pretty much done with all of this for a while.

Advocacy

Julie and I have learned some hard lessons these past few weeks about the fact that there is no place for tact or deference when it comes to dealing with health care providers.

A few weeks ago, we learned about Jocelyn's hip dysplasia only because Julie mentioned to the pediatrician, after he had completed all of his tests during the routine 6-month checkup, including a hip exam, that one of Jocelyn's legs was longer than the other and that one butt cheek had a slightly different wrinkle. He took a second look at Julie's insistence and discovered what seemed to be a clicking when her hip was moved a certain way, causing him to order an X-ray that confirmed that one of her hips needed correction.

To say we were disappointed that this was only discovered (by a pediatrician at supposedly one of the finest hospitals in the country) after we pointed out that there seemed to be a problem is a huge understatement. The fact that Jocelyn's condition wasn't caught until after she was six months old greatly limited her treatment options. If it had been caught in any of her previous monthly checkups, at which hip exams were also administered, she might have had the option of being placed in a harness instead of having to undergo surgery - and anesthesia, and stating overnight in the hospital, and a 3/4-body cast.

Then, after we had the surgery performed to correct the condition, we discovered that the casting was done incorrectly (by a supposed world-class surgeon at another of supposedly the best hospitals in the country), causing a pressure sore to build on Jocelyn's backside that threatened to break down the skin. This was after being warned by the surgeon again and again that a pressure sore is one of the biggest risks to being in a cast for 12 weeks, because if the skin breaks down, we would likely have had to take the cast off, hope any infection went away and the skin healed correctly, and then start all over with the operation and 12-week recovery again. If it's such a big risk, wouldn't you think the surgeon would set the cast correctly?!

We ended up in the emergency room yesterday to deal with the pressure sore. The ER doctors decided to try to saw out the indented portion of the cast to relieve the pressure on Jocelyn's skin, and hope that doing so would not cause the hip to fall out of joint. I'm not sure how you think a 7-month old would react to hearing a loud saw and feeling pressure being placed on the backside of their cast, but it wasn't pretty. I have never heard Jocelyn scream like that. She was so frightened, it took us about a half-hour after the sawing was over to soothe her. Another completely unnecessary trauma.

Luckily the cast still seems to be holding the hip in place, so we don't have to repeat the operation.

I also have to point out that the quality of the nursing care we received after the initial surgery was abominable. I will give just a few (of many) examples. After Jocelyn was put in a post-op room to recuperate, the nurse came by quickly and then simply disappeared for hours. Later in the day, another child was wheeled into our room, and almost immediately her family started to complain that the temperature in the room was too high, so the other child's nurse turned the thermostat down to 64 degrees. The curtains separating the two sides of the room were literally flapping in the breeze from the air conditioner. I'm pretty sure a seven-month old recovering from surgery should not be in those conditions, but our nurse wasn't around, so we were the ones who were left to deal with it. What were we supposed to do, confront the other family and tell them to turn the temperature up?

Shortly after, a second nurse came in (the first one simply disappeared after coming in briefly again; Julie and I were left wondering whether she wasn't just a figment of our imaginations) to check Jocelyn's vital signs. We had just gotten her to sleep, which was no small feat given the amount of noise and activity on the other side of the room. We asked that nurse why she needed to check Jocelyn now, given that no one had been by all day to check her while she was awake, and she said, "I prefer to do this while the child is asleep." Well, I'm glad we can suit your preferences! If dealing with awake children is too much trouble for you, then why are you a pediatric nurse?! That just about pushed me over the edge. I went down to the nurse's station to demand that Jocelyn be placed in a warmer, quieter room where she could rest comfortably. Of course, my request was initially received by the supervising nurse as though I had asked that the building be turned upside down. I think they eventually realized that I was not going away until she was moved, and so eventually they wheeled her down the hall to another room.

Julie and I are furious - furious that the pediatrician missed the diagnosis, furious that the surgeon set the cast incorrectly, furious at the quality of nursing care she received while recovering from the surgery, and furious that she has had to endure all of this completely unnecessary physical and emotional trauma. I can only imagine the frustrations of parents who don't have access to this level of supposed "quality" health care. Our hospitals are supposedly the best in the world - I can only imagine what they are like in St. Louis or Topeka!

We feel the only way we can deal with this going forward is to become vocal, pain in the a$% advocates for Jocelyn, to question everything, and to insist, forcefully, that changes be made when we suspect that she is not receiving the finest care possible. It seems to be the only way of ensuring that things are done correctly. It just seems like those who defer to doctors' judgment are bound to disappointed - both in the doctors and themselves - in the end. We are.

The one bright spot in all of this is that Jocelyn continues to amaze us - she acts as though having on a cast with her legs splayed as wide as they can go is the most natural thing in the world. She didn't cry at all during or after the surgery, and they didn't have to give her any pain medication, despite having to cut one of her tendons. Last night, just a little while after the doctors had sawing her cast, she was laughing and smiling at the nurses in the hallway of the ER. Perhaps she can sense the stress and anxiety her parents are going through and has decided she will be the emotional anchor for us all. I wouldn't put it past her. But I still would like for her to not have to see the inside of a hospital for a while.

Jocelyn's Surgery

For those of you who haven't heard, we found out Jocelyn has a congenital hip issue called hip dysplasia. This means that her hip is out of joint and has been since birth. Although this is not common, when it does occur, it happens more often with first born female babies who were larger babies at birth. Doctors think it has something to do with the cramped quarters first time around. Additionally, since Dave and I both had club foot as babies, this hip issue is more likely to occur in our kids. Supposedly, hip dysplasia and club foot are part of the same family of congenital issues. So, Jocelyn is scheduled for surgery on Tuesday, the 22nd, where the doctors at Children's Hospital will put the joint back into place (without opening her up hopefully) and then cast both her legs from waist to ankle for 12 weeks. The doctors believe she won't be uncomfortable in the casting and it will only delay her walking and crawling by maybe 6 weeks. She is still happy as a clam and will more than likely weather this storm easier than her momma and poppa! Here is her infectious smile again and another shot of her enjoying one of her last tubbies for a while!