Pictures - from 2 weeks ago

This "Skeletal" type composite view looks scary to me. Her fingers resemble ET here, no? Rest assured there are five on each hand, its just that the computer lopped off a few for some reason.

Here is the image that shows the CCAM vs. the normal lung available on her right side.

Mixed info, but all seems well for now

Yesterday we visited Hartford for the weekly ultrasound and were attended to by Dr. Feldman. She calculated a fetal weight of 2lbs, 5 oz. at this point, and the CCAM at 17 cc's, with a CVR of .65. Upon hearing this information, Victoria became understandably upset, asking why the reading was less than the reading obtained in Philadelphia the week before of 22 cc's. The Dr. explained that there may be slight variations in the way that different doctors measure the CCAM, but that the important thing to monitor was the heart and any distress it may be having (signs of hydrops). There were no signs of distress and little Maya was very active.

It is a little disturbing that such variations in measurement have been occurring. I do not know whether it is due to training differences or equipment differences. I do know that the measurements seem to be based on two axis measurements that are then calculated as volume in Hartford, and the ultrasounds are on more rudimentary equipment with lower resolution in Hartford. In Philadelphia I expect the state-of-the-art equipment allows many more measurements from different angles that allow for a more exact calculation for the irregular shape of the CCAM. Whatever the cause, we are pleased with our decision to work with Children's Hospital of Philadelphia for management of this case.

Victoria, Brianna and I have all felt Maya moving around lately. It is a very exciting time to bond with our new child and we are all looking forward to welcoming her into this world, whichever way it needs to occur.

Worse, but still OK...

The latest ultrasound took place in Philadelphia yesterday. We found out that the CCAM has doubled in size, from 10 cc's to 20 cc's. This makes the CVR ratio (head volume to CCAM volume ratio) now a .8 (was a .5 before). The CVR is not double because the baby grows as well, and its all relative. The 'get worried' zone for the CVR is 1.6. The doctors, however, did not seem particularly worried and they said that her heart is still functioning normally with no signs of distress, so the plan is still weekly monitoring. They are still comfortable with Harford monitoring next week.

Needless to say this is a bit of a disappointment, as we had hoped the CCAM had stopped at 10 cc's. It still has potential to grow until 32 weeks, and this is just week 24. So far the plan is still normal birth and surgery later, but our confidence level in that plan is a bit less now.

Until we have more to add...

-Chris

update from Victoria

I want to thank Chris for doing such a fabulous job in updating this blog all the time for me. He caught me in moment of 5 minutes of free time and it was up and ready to type. I am anxious about Wednesday's ultrasound in Philly. After last week's good news, I am worried as we get closer to Wednesday, that news might change. I am also anxious because this time of year is my busy season and a major project I have been working on since May is coming to a close on 1/1 and the customer is finding lots of issues at the last minute. As you can imagine, I am not as focused as usual, and all of these appointments keep me out of the office a fair amount of time, which keeps perpetuating the backlog at work issue.
For those of you who haven't seen me in the last few weeks, my belly has officially "popped". I would say that is an understatement. I feel as big as I did when I delivered Brianna. My stomach hurts from all the growing and stretching, and the night time heartburn is to the bad phase where it wakes me up every 2 hours and sometimes accompanied by vomiting.
Brianna has been so inquisitive about her new sister. Each day she asks us how big is the baby today. We try to compare the size to other objects of the same size. Tonight she said she wanted her sister out now. I think it is hard for a 3yo to understand that a live baby is really growing inside me and will "pop" out of me. Then the reality that she is no longer the only child getting mommy and daddy's undivided attention will set in... and we thought we had big fits now.
I would like to thank everyone for all the prayers, healing thoughts and positive energy and support being sent our way. It is felt and appreciated greatly.

Back to Philadelphia on Wednesday

Victoria spoke with the team in Philadephia last week after we decided that Hartford would be fine for ultrasounds. The team down there felt it best that we stick with the original plan and come down this Wednesday, due to the possibility of quick CCAM growth. So back down Tuesday night it is.

In other news, we have agreed upon Maya as her name, and are narrowing down the middle name candidates to Leela or Lila (both pronounced Leela), or Shakti. Moksha was also considered but the sound was too foreign for Victoria's taste. Yes these names have significance that you can research, I won't spell it out for you.

Here are some pictures in which you can see the CCAM as the white area (taken December 1):

And here's a nice upper body face shot of her.

More good news

Victoria just called me after her weekly ultrasound. Dr. Borgida measures the CCAM volume at 10 cc's, the same as he measured 2 weeks ago. Being that the baby has grown since then, the CVR is now around .4

This is a very positive trend! Hopefully the CCAM has stopped its growth (plateaued) and will not spike again. We have decided to stick with weekly ultrasounds in Hartford, and Dr. Borgida says that it looks like Dr. Watson at our regular OB/GYN office can perform a normal delivery!

So we will still head to Philadelphia for a final game plan in late January, but unless things change we will not have to travel there until then. Woo-hoo!

Also, the Dr. said this will be a very large baby. This is not a surprise to us, as Brianna, who was delivered early, scored over 100% in height and head growth charts as a baby.

We will update this blog with pictures (ultrasounds) soon.

Thank you all for your good ju-ju!

Good news

Yesterday we spent the day at both the Children's Hospital of Philadelphia and the Hospital of the University of Pennsylvania getting tests and consultations. The Children's Hospital was wonderful. Kelly was our care coordinator who had previously spent over a hour talking to Victoria and answering all of her questions by phone with follow-ups. She met us in the reception area and had a printed schedule for our day. She talked us through the schedule and gave us directions to each location we needed to visit, as well as telling us lunch options and even making sure we had our parking validated! She then walked us to the first appointment - a fetal MRI.

After the MRI we went to get a fetal echocardiagram where we found out the heart was doing fine. The technician asked us a question about "her" to which we asked if she saw the sex. She asked if we knew the sex then and Victoria told her we didn't want to know. She then told us she thought she heard Victoria say her and that she wasn't looking for the sex - yeah right, nice recovery ;) This technician then directed us to our next appointment with the geneticist.

The geneticist was a very tall woman, taller than me (think "Duece Bigalow"), and walked us through our family medical histories. She reiterated what we knew from our research, that CCAM is not genetically linked, but she gave us an opportunity to discuss any other conditions we might be concerned about. She was very patient in answering all of our questions and she then asked if we needed directions to lunch! All of the people we talked to each new what our schedule was and each were very down to earth while still being professional.

We also spoke with a financial counselor who showed us our current insurance info in detail. She said that all of our care would be covered, and that if any bills were questionable we should contact her. She gave us her business card. Again very nice and reassuring.

We ate lunch at the cafeteria, where the prices were reasonable and the food was very good. I was able to get a seafood sushi roll lunch for $4.99, can't beat that.

After lunch we headed over to the Hospital of the University of PA for the most detailed ultrasound we've ever seen. The technician was amazing at typing quickly while getting excellent images. They can even see the details of blood flow, both in and out, in color using doppler just like the weather forecasters use for rainfall. She took detailed scans in every direction, and asked if we knew the sex. She warned that she would need to document the sex and for us to look away if we didn't want to know. I did, Victoria didn't, but I could tell she was on the fence. I saw what the technician typed in, "XX." When Victoria asked if I wanted to know the sex again, I told her I already knew. She then broke down and said, "Well if he knows already I might as well know." The technician told us it was a girl and we were both happy to know Brianna was having a sister. Victoria commented that this was less work for her because the baby's future room is already purple.

After the technician finished her work, a doctor came in and looked over some specific things. He informed us that this was not too large, specifically the CVR (volume of head to volume of CCAM) was .57, much less than the worry zone of 1.6. We were starting to feel cautious optimism at this point.

Our last stop was to consult with members of the pediatric surgical team. They presented us with a whole packet of articles relevant to Victoria's questions and a DVD about their facility and procedures. We were told that this condition, while extremely rare for other doctors, is common to them and they see about 10 per week from all over the world. The OB doctor told us that this CCAM is only occupying the bottommost of three lobes of the right lung, and that the middle and upper lobes were slightly compresed but OK. He told us that in his experience the majority of tumors of this size grow somewhat, but not enough to threaten the baby. He expected that we would be able to deliver normally (or "vaginally" as Victoria is fond of saying), most likely in Hartford if things continue to go well. After the birth, the baby will need to get the tumor removed at 4 weeks, after proper bonding at home. Philadelphia is equipped to do the operation and they say the baby will go home in 2-3 days and the lung will grow back to fill in the space. The child will have full, normal lung function in short order.

We agreed on a plan to get a detailed ultrasound weekly, switching weeks between Hartford and Philadelphia, with a final evaluation at week 32. We were cautioned that the tumor could grow to very large very quickly, but it was unlikely. They scheduled our next 2 visits right then and there and we were on our way. What am amazing facility. What a relief. Victoria and I were now much more optimistic and we both feel that we can let down our emotional guard and bond with what we now know will be our little girl.

Thank you again to our amazing supportive family, friends and co-workers.

Surreal times

In the past days Victoria and I have been doing so many tasks at the same time that the normal perception of time has become blurred. It is surreal how much has changed in the past week, and the changes are coming at an exponentially faster pace. Tonight after work we drive to Philadelphia for a full day of exams and consultations Wednesday. We should have a better idea of what happens next at that point. Philadelphia Children's Hospital and their care coordinator have been wonderful to us, and we are greatful. If the administration from the San Francisco Children's Hospital are reading this, take note - you are losing business by having a patient coordinator that is poor in communicating and disorganized in having information available. Patients need confident and caring communication in deciding on a hospital to visit - San Francisco is renowned for their skills, but the patient relations suck.

Our family has been incredibly supportive, and we are fortunate and grateful. My sister Nicole and Her husband Eiko are taking care of Brianna, as well as my mother Dayle and my step-father Jack. Victoria's family has also offered incredible support. Our heartfelt gratitude goes out to all who are pulling for us in this troubling time.

If we don't respond to e-mails or calls in a timely fashion, please forgive us as so many tasks are going on that we need to prioritize communication time. Verizon's network is working overtime for our cell phones! Victoria is now texting while on conference calls on hers. Technology has been very good to us in this situation. I can't imagine where we'd be without the internet for research and cell phones for communication while away from home and TomTom to guide us quickly to unfamiliar places. We also have our ultrasounds on CD for easy transport wherever Victoria goes. Some people may be intimidated by it, but modern technology may literally be lifesaving to us.

On another subject to those reading this - anyone want a kitten or a teenage cat? We know of some abanoned kittens and very affectionate cats that need homes. Kittens will need mom for 3 or 4 more weeks, but cats are healthy - 1 short-hair domestic female and same for male. Actually I haven't seen the male in a while but the female is there all of the time - and it is not the mom. I guess the mom will need a home too if we can ever find it - it takes off whenever we come around, unlike the others. E-mail us @ seekerhiker@hotmail.com

We are going to Philadelphia

Victoria spoke with the care coordinator at Philadelphia and all of her questions were answered professionally and quickly, putting her at ease. They also are going to get us in Wednesday AM for a full suite of tests and consultations. San Francisco's coordinator could not provide basic statistics and was very put off by Victoria's questions. Not good to have a poor attitude with a woman under such stress. Needless to say she called me in tears and we decided to go with Philadelphia. Later in the day Dr. Borgida spoke with Victoria and let her know he was going to refer her to Philadelphia. That made us feel good about our decision.

Dr. Borgida has put all of our info on a CD and our friend Pam dropped by the hospital and picked it up for us (thanks Pammy!). He told us the CVR ratio is just .5 (volume of CCAM compared against head volume). 1.6 and above is very worrisome - we will see the trend on Wednesday. I was surprised it was not much larger after seeing the ultrasounds. Guess that's why I'm not a doctor.

So away we go on Tuesday night and we'll see from there.

Serious problem with our baby

On Tuesday we went to the OB/GYN for our 22 week ultrasound. We brought Brianna (the big sister) and Grandma Dayle to see the new baby. Towards the end of the ultrasound the technician was taking extra pictures of a whitish area that she wanted to have the doctor review. Knowing that something disturbing would be discussed, we asked Grandma to take Brianna to McDonalds until our visit was over. She knowingly did so.

The doctor came in and told us that there was something wrong with the baby, but that neither she nor the senior doctor of 25 years could conclusively say what it was. She said it was very important to get an appointment with Maternal Fetal Medicine in Hartford the next day. She would discuss the ultrasound with those high-risk pregnancy doctors the next morning and get us in ASAP. It turns out that the next day Maternal Fetal Medicine set us up with an appointment for Dec.6 - a week later. That did NOT FLY! We called the original OB/GYN and she was able to get us in on Friday.

At the visit to Dr. Borigada in Hartford, the ultrasound technician focused on a large white area. Victoria asked what the white area was, the technician said that that was what you are here for. Soon thereafter Dr. Borgida came in, and after a barrage of questions from Victoria and a lot of looks at the baby's heart, proceeded to explain to us that this was a piece of undeveloped lung tissue that filled up the right lung cavity, called a CCAM, most likely type III. I asked if that meant basically a tumor, and he said a benign one, but yes.

He explained to us that in some cases the CCAM can shrink to a manageable size (or at least not grow, while the "normal" baby and lungs grow around it) to make surgery after birth an option. In other cases the CCAM continues to grow and crowd the heart until the baby suffers hydrops (circulation to the heart is cut off and the body fills with fluid), or heart failure and dies. He said that we would watch the progress with ultrasounds every two weeks, starting first with an MRI in one week (Wed 12/6) to look for what viable lung tissue is there, and to be sure that there is no fluid build up in the body (again, sign of hydrops).

He also told us that there is nothing to be done. We asked if fetal surgery was possible and he said no. He outlined the option of waiting it out and hoping for the best or termination of pregnancy. Being that we were at 22 weeks pregnancy, he informed us that termination is only an option in Connecticut until the 24th week. I asked if we should be looking for a trend of increasing size or decreasing size in the tumor. He said that was exactly right. Being that we would not meet with him for 2 more weeks for the next ultrasound, we would have no useful data to make a decision. He said the only other termination option was one doctor in Kansas (how ironic is that - Bible-belt Red state and all!). So basically we were flipping a coin on whether we would have a baby that will survive or not. And he said that there is a fair chance the CCAM would shrink, but he also cautioned that it is VERY large, visually it seems to take up about 1/3 of the baby's body (similar to the one in this video).

So upon arriving home I immediately looked up CCAM, and the first Google link led to San Francisco Children's Hospital, where they have 3 separate procedures for fetal surgery. They have saved many children with similar CCAM's. The statistics are that there is a 61% survival rate for these procedures. That is a damn good number, especially considering that they do not operate until hydrops (heart failure) is already in progress, which guaranties death without intervention. Further research also led to the Children's Hospital of Philadelphia and a Children's Hospital in Cincinnati. These appear to be the only places in the country to offer fetal surgery. We were quite angry that our doctors did not offer these places as an option, and we are going to be researching their success ratios and experience before making any decisions where to go next.

Next steps are to contact San Francisco, Philadelphia and Cincinnatti hospitals on Monday to get our ultrasound films sent to those hospitals ASAP, and then wait for the results of the MRI and the consultation from the other hospitals. We will pick a hospital based on their success rate and volume of operations. Even if the tumor appears to be reducing itself, surgery will most likely need to performed at delivery with the placenta still attached (C-Section delivery manditory), and that is a surgery that Hartford Hospital cannot perform. It is called an EXIT procedure. So it does not appear we will be delivering at Hartford.