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Well I just typed a a huge blog entry then lost it - so here it is again in a condensed version:

Maya is doing great, her eyes are turining from grey-blue to hazel-brown, and she maintains some eye contact now. She weighs close to 10 lbs and has a voracious appetite. She is awake more of the time and is pretty content just looking around, except when she is grunting and groaning with bowels trying to work.

Victoria had to go in last week for removal of a piece of retained placenta. She needed to stay overnight but lost less blood that with Brianna, and did not need a transfusion.

Brianna is very loving to her sister. Last night she was "reading" a story to her and she often explains to her what things are. Very cute.

Her operation date has been upped to April 27 by Philadelphia, so hopefully that will not be an issue for me to be gone for a few days by my new employer, the CT DEP at which I start on April 13.

All for now...

1 week, 2 days old

Maya has passed the week mark with only a slight medical stumble. On Friday, during the blizzard, we took her to the pediactric doctor and were told she had lost an ounce in the past 3 days, and looked fairly jaundiced. This, combined with the information that Maya was sleeping almost all of the time, caused some alarm for the Dr. She suggested we supplement each feeding with some formula, and also go to CCMC (Connecticut Children's Medical Center) in Hartford to get her checked out.

Off we went in the blizzard - and boy was it slick! We do not have snow tires on our AWD mini-van, and the ABS brakes were kicking in like crazy at every stop. We had some close calls stopping. We drove up and over Avon Mt. with no issues ourselves, but cars were stuck all over. I hope everyone who thinks "all-season" tires mean "work well in winter"
learned a lesson. They suck in snow. Next year I will even buy snow tires for the AWD van for sure.

So we arrived at the hospital and were put into a "pod" to await blood tests. The afternoon was wearing on and I needed to pick up Brianna, so I headed out while Victoria waited with Maya. It took me over 2 hours to get from Hartford back home, and the snow was over 6 inches by then. I picked up Brianna and we went back to CCMC where Maya and Victoria were still in the pod. Her blood tests came back showing a jaundice level of 15, well under the level of 20 that concerns doctors. However her red-blood cell count was high, indication some dehydration, so they gave her 70cc of IV fluid. Victoria said it was heart-wrenching to watch them insert the catheter while Maya screamed. I am glad to have missed that part.

Brianna was all kisses for Maya and has been so far. She can hold her with supervision and loves to help with diaper changes. She is getting so mature! She gives her hugs and kisses at night and announces loudly for all of us to come look when she opens her eyes. Since the hospital Friday she still mostly sleeps. People tell us this is a blessing but the doctors say the opposite. She seems healthy otherwise - we will have to keep monitoring her and are scheduled for a doctor visit on Monday to check her weight again.

Also - for more pictures you can go to http://flickr.com/photos/gorskipics and click on any of the sets.

Oh yes - the operation for the CCAM. We are scheduled to have it performed on the 4th of May down at the Children's Hospital of Philadelphia. So far no interference from the CCAM, but removing it will allow full normal lung capacity to develop and will remove the risk of malignant cancer development in the future from the tumor.

Four Days Old and Doing Well at Home

First of all, sorry for the lack of updates in the past few days. Lack of sleep can really distort your sense of time.

Maya only spent 1 1/2 days in the NICU, with only 12 hours or so on the supplemental air "CPAP" machine. Although her APGAR score was 5 at birth and 8 at one minute, and she appeared to have more of a struggle breathing at birth, she actually recovered much more quickly than Brianna did and had no problems eating right from the start. Her initial trouble breathing was due to fluid in the lungs which quickly cleared itself up. The CCAM is causing no trouble, and will be removed May 4 (tentatively) in Philadelphia.

So here are the stats, Maya vs. Brianna:

Gestational age of birth: Brianna 37 weeks, Maya 35 weeks.
Weight at birth: Brianna 7 lbs 4 oz, Maya 8 lbs. 8 oz
Time of Labor since induction: Brianna 22 hours, Maya 14 hours (Victoria had pre-eclampsia both times)
Time spent on supplemental oxygen: Brianna 2.5 days, Maya .5 days
Time to normal eating habits: Brianna - over a week, Maya - instantly.

So basically, go figure. All statistics are out the window, including the stat that says it is very unlikely to get pre-eclampsia twice. BS. This is the last baby for us as another would have a good chance of killing mother and child. Victoria had a very high creatinine level in her kidneys this time, which they are continuing to monitor.

Mother and child got to spend a normal time together in the maternity ward for a day. Unlike Brianna, this time we were able to get the "Special Delivery" cake and have a baby photograph taken in the maternity room. We were visited by Auntie Megan, Grandpa Davis, Auntie Nicole, Cousin Savannah, Grandma Dayle, Nana Whittier, Allison Anderson, Bonnie and Shannon Brownell, and Pam Pellitier. Many pictures were taken and can be viewed at www.flickr.com/photos/gorskipics - go through the most recent sets.

Since arriving home, Maya has been perfect. She sleeps a lot, grunts and makes puppy sounds, and feeds very well. Victoria is very happy, as is Brianna. Brianna has been a very helpful big sister, and appears to be adjusting well.

Maya is here!

Maya was born at 3:09 AM. She is 8 lbs, 8 oz. and 21" long. She had some lung fluid at birth and is in the NICU just as Brianna was. As they were hooking up the monitors and the CPAP air machine, Maya was trying to rip the things off - I had to restrain her arms. Strong little girl! Victoria did an outstanding job delivering her and she is resting for 24 hrs. before they will take her off of the magnesium sulfate and allow her out of bed. Following are some pics, then I need to be off - people and things to get!!!

Here we go!

Yesterday (Wednesday, March 7) Victoria went for a check-up at the OB/GYN office. Dr. Saidel took her blood pressure and weight and there was a blood pressure reading of 147/91 and a weight gain of 5 lbs over 1 week, after only gaining 14 lbs. the rest of the pregnancy to that point. These symptoms pointed to pre-eclampsia, which is supposedly very rare to repeat itself, but is exactly what happened with Brianna our firstborn, even at the same relative time in her pregnancy.

So the Dr. had her go home with instructions to keep of her feet as much as possible, monitor her weight closely and return on Monday, March 12 for a re-evaluation. What happened then was that Victoria visited a blood-pressure kiosk in a grocery store that afternoon and noticed and even higher reading of 147/98. She called the Dr. who then told her to visit on Friday, and call if things started to get worse. That evening (last evening, actually) our friend and Brianna’s Goddess Mother, Bonnie, came over to check on Victoria and take her blood pressure professionally at home. She brought an electronic blood pressure cuff which refused to read Victoria. Bonnie tested it on herself to be sure it was working properly, and it read just fine. She also tested it on me, and it also read fine (135/75 – a big improvement for me!), then tried it several more times on Victoria and it refused to read her. At that point Bonnie (who is studying to become a nurse) brought out the manual cuff and stethoscope and got a manual reading of 147/98. Just so those of you who didn’t go through med school know, the first number should be less than 130 and the second number less than 80. Bonnie also noted that Victoria did not look good and Victoria had a bad headache. So she called the Dr. at 9 pm or so and was told to come in to Hartford Hospital for evaluation.

Bonnie graciously offered to spend the night at our house with Brianna. Brianna was very upset that Mommy and Daddy were leaving her, and I think she was scared about the whole hospital thing, associating it with old people dying. We did our best to explain that it might be time for Maya to be born and had to let Bonnie pry her away from us so we could go. We later heard that she was OK very soon after we left and behaved very well for Bonnie.

We arrived at the hospital and were checked in sometime between 10 and 11 pm. A very knowledgeable resident doctor had some blood tests run that showed Victoria’s creatinine level to be 1.2 and her uric acid to be at 8, more than double what they should be. Also she was/is “hyper reflexive,” meaning that her knee-jerk reflex is very strong. These signs all point to pre-eclampsia, which needs to be treated by magnesium sulfate along with induced labor – or the mother can progress to “eclampsia,” which means seizures and possibly death for both mother and child.

So today Dr. Watson ran some more tests and the creatinine was up to 1.4 – indicating worsening pre-eclampsia. She took less than 2 minutes of reading the charts to decide that Victoria needed to be induced, despite Maya being only 35 weeks old. The NICU is prepared to evaluate Maya at birth and will likely be where Maya will be staying for a few days.

Victoria at this point (noon today, March 8, 2007) was starving so Dr. Watson gave her permission to eat so light food. I went to Friendly’s and bought her a bowl of chicken noodle soup and a large orange soda. She craved root beer with Brianna and now craves orange soda with Maya. This was the last food she could have before being moved into labor and delivery and being put on magnesium sulfate, pictocin and vancomysin drips.

So we were moved from a night time stay in the “triage” room of the maternity ward to the labor and delivery ward, where Victoria is now hooked up to an IV in each arm and is feeling yuckier due to the meds. Brianna is with Auntie Nicole, Savannah and Uncle Eiko tonight, and Victoria’s sister Megan has been over our house cleaning and preparing baby items which we were not prepared for this early! We also just remembered that we came without an infant seat, so I will need to get one at Wal-Mart before we leave. We have been very lucky with family helping with this pregnancy, and our gratitude goes out to everyone. Victoria’s father Jim will also be coming up tomorrow (Friday) at noon from Florida to be present with his new granddaughter at an early age.

So now we wait…Victoria is in room 616 in Hartford Hospital’s Labor and Delivery ward, (860-545-0616 if you want to call before labor gets too intense, probably before 6 or 7 pm tonight, or after we get the word out that the baby has been born, either in this blog or via the phone tree) and is waiting for nature and medication to take its course.

It is a bummer that our wonderful experience with HypnoBirthing classes will not get put to full use, as it looks like they will need to whisk Maya away very soon after birth without much bonding time, more due to prematurity and the effects of magnesium sulfate than any effects due to CCAM.

My apologies if any of this is rambling or doesn’t make sense, but I had very little sleep last night with very vivid dreams of teams of nurses coming into a room I was in trying to sell such things as coffee from a large, wheelable machine, cat food at ½ price, and bolts for a BMW motorcycle.

More to come when I can update...

Update from Philly Trip in Feb

So sorry that we have not provided any recent updates. No news is good news in this case... well at least as Maya is concerned. Mommy on the other hand has been in a lot of pain. But first lets provide a Maya update:

Chris and I went to Philly on 2/6 to have a final ultrasound there and to get the word from the docs where they want us to have the baby and what special circumstances might we need to be aware of for her birth. GOOD NEWS! The tumor had not grown since early January, and Maya has grown. She weighs approx 5lbs as of the 6th of Feb, and they are not wanting to move my due date any earlier from April 7th. BIG BABY. So from a technical perspective, the left good lung is 28 cu cm and the right good part of the lung is 24 cu cm, so there is only a 4 cu cm difference in good lung tissue, which they feel will lead to a intervention free birth. They feel that the good part of the right lung will do fine and not need oxygen or anything else.

So the plan for the birth is that Chris and I will have Maya at Hartford Hospital as originally planned with our original OB/GYN group. At 5-6 weeks after birth, we will head to Philly on a Thursday for a CT scan, Friday would be the operation where they will first attempt to make 3 small laproscopic incisions on the right side. The surgeon's goal is to sever each and every blood vessel connecting the good tissue with the tumor. For that reason, if they can't see everything, then they will need to open her up further. They won't know until they go in. They will be leaving a type of catheter in her for a day or two, just to make sure that all tissue seals appropriately. They said most of the time they do, but small chance they won't and the only intervention is to stay in hospital and wait for them to seal. No worries. They said if all goes well, we will be able to leave on Monday or Tuesday. Chris and I will probably stay at the Ronald McDonald house while we are there, considering it is $15 /night vs. $200 at a hotel. My mom has graciously offered to fly up from Georgia and stay with Brianna at home while we are in Philly with Maya. We are very thankful for this offer. I am sure she is going to enjoy her 1-1 time with Brianna, as will Brianna with her.

All about our birth plan. Chris and I have been taking special birthing classes, called hypnobirthing. The idea surrounding this type of birth is that babies remember their births and we want to provide a drug free, stress free entry into this lifetime. They have learned this due to studies in past life regressions where they bring individuals back to the point where they were born and people recall the trauma experienced coming through the birth canal and in particular forceps, suction, being yanked out, toweled down and poked and prodded. All of which felt shocking after having been hanging out in a warm womb. So we have been learning how the uterus actually functions when left to its own devices (like many women in other countries where medication is not only not needed, but not used). Learning how the body actually functions helps when visualizing the baby being born. We will attempt to not use any pain medication and hope not to have to be induced, which causes unnatural labor, which actually hurts. Our OB/GYN practice has heard of this and has preliminarily accepted this approach. We will see what the hospital staff have to say, especially since Maya is considered high risk still in their minds.

How mommy has been feeling lately...

Mommy has had lots of pain in the right upper abdomen, which wraps around the back. At first it was just the abdomen (3 months ago), then it started to wrap around the back (2 months ago), then it went from once in a while (1 1/2months ago) to 75% of my day, including nighttime. So now I have been experiencing sharp shooting pains almost all day and night. The doctors checked my gallbladder and other organs twice just to make sure it wasn't something else. They finally concluded it was just a big baby with her butt jammed into my ribs. They said there is nothing they can do for me, that I need to just manage with it. So for those of you who haven't heard from me or when you have I have been cranky, you know why. Of my other pains, heartburn at night has gotten increasingly worse. At a recent Dr. appt they said to take pepcid AC at night before bed, followed by liquid maalox to coat the stomach (this is in addition to zantac 2x a day and tums when symptoms appear) So I asked Chris to get the box of pepcid down from when I was pregnant with Brianna. He did, but he also took some other stuff out of the medicine cabinet at the same time. He put some pill bubble pack on top of the opened box of pepcid. It happened to be the size of the box, so I didn't look at it and just started taking those pills each night... and each night I would continue to wake up every 2-3 hours almost vomiting from the heartburn. I was cursing the pepcid AC, which had worked so well when I was pregnant with Brianna. 7 days later when I was down to the last pill in the packet, I finally looked at the pack. To my surprise it didn't say pepcid, but rather Zelnorm. I freaked! I yelled to Chris to look up what class of drug it was, which ended up being class b safe for pregnant women. It is medication for IBS, so needless to say, my bowels had moved well that week. So now that I am actually taking the pepcid, it has made a huge difference and now I only wake up about 2x a night b/c of heartburn. I guess this is all mother nature's way of prepping me for not sleeping when Maya is born.

On due date...

The doctors say that they will not change the April 7th due date, which they made based on an early ultrasound (at 6wks). My original due date was March 26th, which I think is closer to the real date Maya will make her entrance into the world. Sorry for all those rooting for April.

So now we are being treated like every normal pregnancy and I actually don't have a Dr.'s appt this week (first time since November!) I am going to go this week for a pregnancy massage and to a chiropractor that specializes in pregnant women. I will share how that goes. I need some pain relief and I am sure that Chris who has taken the brunt of my grumpiness is looking forward to that as well... Have I mentioned he is a saint? Well he is.

That is all for now and sorry for the long delay.

Ups and downs...

Victoria and I have begun taking a hypnobirthing class. It has some wonderful practices to bring a baby into this world peacefully and with a minimum of pain for the baby and mother. That is if the baby is not induced or C-sectioned...Which brings me to the down.

You have read in previous posts that the baby is big, very big. Victoria took a 1-hr. Glucose Tolerance test and the result was 155, which is borderline number where a 3-hour test is needed (less than 140 = no gestational diabetes, over 200 = definately gestational diabetes, in-between equals more testing). We are still waiting for the 3-hr test results, but the numbers on the baby size vs. her age as measured both by date of last period and by initial ultrasound point to gestational diabetes. Which means more monitoring of baby and Victoria, strict dieting for Victoria in addition to possible insulin shots and most likely early, induced labor or C-section. There go the lessons of the class!

In addition, gestational diabetes leads to a 50% chance of developing type 2 diabetes later in life for mothers, and a higher risk of obesity and diabetes for the child. Poor kid is not getting a break! So we will write when more info comes...

In the meantime - look at Brianna's first dance recital videos...She is the mouse that appears first poking her head out on the left...

http://video.google.com/videoplay?docid=8713637812862030990&hl=en

and the bows...

http://video.google.com/videoplay?docid=3823443496181798375&hl=en

Pain in the gut from the butt...

Victoria has been experiencing great discomfort lately in her upper abdomin. The pain has been so bad that we were worried that it might be gallstones or pancreatitis. Turns out it is something much more humorous, but no less painful.

Yesterday at her OB/GYN visit to Dr. Saidel, he took an ultrasound of her abdomen. The gall bladder was fine, but there was a large protrusion in the area. When Victoria asked what it was, she was told that was the baby's butt. So the baby is bent over with her butt jammed into Victoria's right-side of her diaphragm. To add to that, the baby is huge. She is at the size of a 33-week old fetus, although she is only 28 weeks old! Her initial blood glucose levels are not terrible, so it doesn't look like pregnancy-induced diabetes, just a big girl.

So instead of the baby being a pain in the ass, she causes pain from her ass ;)

-Chris

Update from Victoria from Philly visit on 1/3/07

Finally we have some good news! I was went to Philly Wednesday for my bi-weekly ultrasound with them and the results were that the tumor hadn't grown since the last visit to Philly. The Dr.s felt this was excellent news and they have decided that due to how far along I am (27 weeks) and the fact that it stayed stable for 2 weeks, that the tumor growth has plateaued. They said they don't feel the need to see me again until 2/6/07, which will be my 32nd week. They would like me to continue to get bi-weekly ultrasounds from Hartford, just as a safety net. At this point they said that if there is no significant changes between now and the 6th of Feb, then I can have the baby at Hartford Hospital via normal birth. The only thing Hartford will need to do is to ensure that the baby is breathing ok when it comes out and they need to do an xray at 6hours post birth to check the lungs. The next hurdle after that will be that at 4weeks old, we will need to take the baby back to Philly to have the tumor removed. I was able to meet with the surgeon who will be doing the operation when I was in Philly on this trip. He explained that we would arrive on a Thursday to have a CT Scan, Friday he would perform the operation, which consists of 3 1/2 inch incisions in a triangular shape on the right side of the baby. He then inserts 3 scopes that he views the lung and lesion to see how fused together they are. If they are fused too much, then he will need to open the baby up to get a better view. His task is to sever all the blood vessels that connect the good lung with the tumor. Then he pulls the tumerous tissue back through the small holes and they leave a chest tube in for approx the rest of that day to ensure that all of the air sacs have sealed. If an air sac doesn't seal, they need to leave the chest tube in until it seals itself, which could take 1-10 days. Once the air sacs have sealed, the chest tube is removed and the baby stays in the hospital for 3-4 more days and after that is released and checked at 6 months and 1 year with CT Scans to ensure that there are no other issues. In addition, they will also do a biopsy on the tumerous tissue to ensure that it is benign. Apparently there have been a few cases, where it was malignant, so they just like to be sure.
So we are feeling much better about the entire situation. It is still stressful, but we have more of a comfort level now that we are past some big hurdles.
From a general how is the baby growing perspective, we were told she weighs approx 2.5 pounds, which is apparently very big for her gestational age. She is tracking 2-3 weeks ahead of her actual gestation age for her size, so anyone hoping for April I think is going to be disappointed. End of March is more like the date. Besides for any of you who have seen me lately, I too look like I am tracking 2-3 weeks ahead... my stomach is huge. She is riding very high and like a basketball. According to the Drs. she is very active during ultrasounds and I can vouch for the activity at all other times. I think we will be busy running after this one.

Thank all of you for your healing thoughts and prayers... they are working.

Next appointment is in Hartford the week of the 15th of Jan for another ultrasound and my regular appointment on the 16th with my OBGYN.

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.

1/2 Way point!

So it has been a busy 4 1/2 months for Victoria, Brianna and I. Brianna is adjusting pretty well to her new day care where this new child will be going as well. Victoria has had ups and downs in the amount of travel she has had to do for work, but she has been home a good amount. She is showing quite nicely now and is having kicks on occassion. I was able to feel the baby move a month ago. All tests look good for a healthy baby.

Is it a boy or a girl, you ask. Yes is the answer. Victoria wants a surprise and I support her on that. I was kind of 60% towards wanting to know at first but I am now 70% against. A surprise will be good. Victoria said that she wants a surprise after 9 months of carrying the baby and all of the pain of labor. Who can blame her?

Names picked out? Sort of. We are leaning towards Maya for a girl, or perhaps Willow, Chamomile and I just thought of Brook. Boys names? I have no idea. Victoria came up with some but none resonated with me. We'll have to wait for some inspiration.

Victoria has had a fair amount of both nausea and heartburn with this pregnancy, more so than with Brianna. The baby seems to be carrying the same way though, for those of you guessing a sex.

We are trying to work out finances and time off for the birth. Insurance-wise seems to be taken care of, but time off and income during that period is an unknown. It is frankly stressing me out, as my salary and time off benefits are not friendly to paternal time off. Victoria should be able to take short-term disability leave at 80% salary. Hopefully some bonuses or something will appear by then.