Long time, no updates!

Daddy - What took you so long?

It's been a long time since we've done an update. We have learned that having two children is exponentially more time/energy consuming than having one child. With one you can take him/her nearly everywhere with you with ease, and if one parent needs to do something solo, no problem. The other parent or a family member can handle the child fairly easily.

Now with two children, especially with one being an infant, everything needs to be carefully planned and prepared for, and going anywhere takes at least 45 minutes just to prepare/pack for, and can be much longer if the infant needs feeding first.

Along with Victoria being back at work full-time and resuming heavy travel, I have had a heavy workload and my current job does not allow for "non-work related" Internet use. The result being that there has been no free time and energy left to blog. But I have a window of time now that will allow me to fill-in the past few months.

Maya is doing great. She is amazingly big for her age - way off the charts. She is currently 22 pounds and 27"+ long. She wears size 4 diapers now and her clothes that fit comfortably are the 12 month ones.

She is a great smiler and it is easy to get her to do a deep smile!

The opposite of her smiles is the pouty face she puts on before crying. This has become more frequent as she seems to have been teething for at least a month now on and off. Her chubby face combined with her pout makes her look like one of those 1920's babies that you see often on the funny greeting cards.

She has also begun to use her hands to manipulate things. She grabs at my mouth and makes cooing sounds which I imitate back. I put a french fry in her hand last week when I was at lunch with Brianna, and she waved it around and mushed it a bit near her eye. Brianna laughed and said she looked like a pirate waving a sword.

Brianna adores her little sister and is so good at attending to her and helping out mom and dad! She loves making Maya smile (not a tough job) as well as helping feed her, burp her, get her clothes and bathe her.

Brianna has been taking swimming lessons and is getting more confident at it. We are still waiting for her to be able to submerge her face without fear, but she kicks well and can go way out into deep water with her floating swimsuit on.

On to Maya's latest medical news. We had her 4 month exam with a cardiologist. She has 4 cardiac-related issues we are watching and will follow-up on in a year.

1. PDA - she still has this, and although it is small the cardiologist recommends we have it closed off when she is a few years old. He does not expect it to close on its own at this point, and although it may cause no visible problem, it leaves her with an increased risk of cardiac infection. He wants to wait until she is bigger to insert a catheter up to the PDA site via her leg - just like an adult getting a shunt installed. Right now it is riskier due to her small arteries.

2. PFO - this is smaller than first diagnosed. The cardiologist labels it as minor and does not anticipate any need to intervene.

3. Enlargement of right-side of her heart/asymmetrical pressure . The cardiologist beliefs this may be a residual effect of the CCAM and will monitor.

4. Slight intermittent murmur unrelated to any of the above. Not expected to be a problem, most of us have one that is undiagnosed.

Maya and Brianna are also happy to have a new cousin, Jake Ryan. Savannah is doing very well as a big sister to Jake.

Maya doing great - followup Thursday in Philly

Before you read on, check out this video link from MSNBC - this is a little boy that went through the worst case scenario that we were preparing for with Maya, and the team at Texas Children's Medical Center did their first fetal open CCAM surgery - way to go doctors! We can now add Texas Children's Hospital to the list of CCAM fetal surgery centers.

http://video.msn.com/v/us/msnbc.htm?g=83EF17D0-4EE1-4D28-9F76-46F8C135C82D&f=00&fg=copy

Maya is doing great! She was 15 lbs. 5 oz at her latest doctor's visit, and solidly (pun intended) off the charts at the 98th percentile for weight, head circumference and length. The "chart" stops at 95%. She still has bouts of pain from acid reflux even being on the max dose of Zantac for her size, and gas is another cause of discomfort for her, but it is getting to be a problem less often. She is alert more, and has started day care at the same place as Brianna. Brianna is a very protective and proud big sister. We were at a restaurant on Sunday and Maya started crying quite a bit. Victoria took her outside to console her and told me to stay at the table with Brianna. Brianna was very concerned with Maya and wanted to go with Victoria outside - I told her to stay with me and tried to catch her. She screamed in a guttural tone, "Let go of me!" (which I did immediately, having never heard that tone before) and ran out to check on Maya.

Brianna is also becoming very motherly in another way - she is concerned about my bonding time with Maya. She always asks me as soon as I come home, "Daddy, Maya's eyes are open, do you want to hold her?" This may be a reaction to Maya being with Victoria so much of the time due to breast feeding, but it still is cute seeing Brianna try to "balance out" the family.

Brianna is now able to pedal her training-wheeled bicycle very well by herself. She rode close to a mile last night on a "rails-to-trails" down the road from us. Her only issues are being able to use her brake properly (she keeps putting her feet down to stop), and consistently looking ahead where she is going. Once she gets those down pat, we will wean from the training wheels. Victoria and I have two new bikes and a trailer for the bikes, so we ride Maya behind us and get great exercise whenever possible. We are now big fans of the multi-use trails.

Brianna has also mastered driving her electric jeep and has learned to operate her LeapFrog portable video game system. She is advancing intellectually in leaps and bounds. She still has volatile emotional swings that cause fits that make her seem like the worst brat on Earth, but can bounce back quickly to be as sweet as can be. We have learned that sugar is bad, and chocolate is much worse for making her hyper. Her attention span is also short but intense, and changes constantly. Once she states she is done with an activity, getting her to finish with it is almost impossible (puzzle, game, etc.) I am trying to get her to follow through with tasks, because I see my patterns in her, and one of the things that has held me back the most in life is my lack of attention to detail and follow-thru.

Brianna will be coming with us to Philadelphia Thursday and is very excited to do so.

More testing...

Maya is still at the Connecticut Children's Medical Center (CCMC) in Hartford undergoing observation and tests. Victoria has spent 2 nights there and I have spent one keeping a 24/7 vigil with Maya. Deb (Victoria's Mom) has been a great help by caring for Brianna at home. Her first 2 nights there were bad, with some uncontrollable crying spells with back arching and consequent low oxygenation and/or turning blue. Also a few "blue spells" for no reason with good oxygenation. A main culprit is believed to be GERD or acid reflux. They started her on a minimal dose of Zantac with little/no effect which our primary pediatrician (Dr. Brown) prompty increased to the max dose. This appears to be working darn well, as she has had no crying spells of note since then.

To rule out other issues, Avon Pediatrics doctors Brown and Perks have ordered consultations by a cardiologist and a pulmonologist, as well as a sleep study and a barium swallow study. All visits/tests have been done with the exception of the barium study, to be done at 3 PM today. We hope Brianna will swallow the barium, as we are strongly opposed to the alternative of snaking a feeding tube down her nose to force it in.

The cardiologist sees no indications of issues arising from her PDA or PFO, and thinks they will close on their own, and wants us to set a follow-up appointment for 3 months from now. The pulmonologist thinks the GERD is responsible for closing off her airway intermittently, and has ordered a lengthening of the originally prescribed barium study by 20 minutes (why? I don't know). The sleep study results are unknown at this point as well. We are sure that when the results are in Avon Pediatrics will call us ASAP, as they have been doing all along.

GERD is not unexpected in her, as Brianna had it pretty bad for a few years and was also on max-dose Zantac. It eventually resolved on its own.

So hopefully Maya will be home later tonight or tomorrow at the latest.

-Chris

Unexpected possible turn for the worse

We made it safely home Sunday night and enjoyed some time with Maya seeming near-normal on Monday. Today (Tuesday, May 1) however, Maya has some perceived difficulty breathing and some skin-tone changes on one side of her body, as well as feeding changes. On the advice of Dr. Flake (the surgeon from Philadelphia), Maya is going into the CT Children's Medical Center to get a chest X-ray and to be put on an oxygen saturation monitor. Victoria has brought her there and I will be joining her after work. We hope there is nothing serious going on, but if so, we will aggressively seek the best treatment for her. I will update when I know more.

-Chris

Going Home Today!!!

This is Chris - I just got the word from Dr. Flake that Maya looks great and, pending the results of another x-ray, she can go home today - yipee!

I fed her 3 times last night, and she is eating great and is very alert when feeding and after for a while.

Maya gets drain removed - doing great!

Her chest drain tube was removed tonight, and there was immediate relief for Maya. We took her right out of the crib and Victoria held and fed her plenty and was even able to burp her with no visible discomfort to Maya. She even smiled at me when I made funny faces at her and gave her raspberry kisses.

-Chris

A Good Feeding - Progress!

This is Chris - Victoria is having a much-needed rest on a fold-out chair bed next to Maya's crib.

Maya just woke up enough to gulp down 4 oz. of milk, with much less discomfort than last night. She is back to sleeping now. Her drain is starting to leak fluid around the outside of it, and not draining on the inside, so it possibly is clogged. Air is not accumulating near her lungs in X-rays however, so the docs are not concerned. The plan is to do one more X-ray this evening, and if all looks good, remove her tube. This will leave an open wound that they will cover with gauze. This wound should close up within a day.

We had an observant resident dr. notice her abdominal distension (which she has always had). They did an abdoninal x-ray and discovered a weak area of muscle wall near her belly button. They are not overly concerned, but this could lead to a hernia and will also need to be followed. It is amazing how the other doctors, who were so focused on her CCAM, missed other things going on. I love seeing a resident doctor come by, because they are so observant and pick up on things that more experienced doctors overlook. An astute resident in Hartford, present when Victoria was induced, noticed an intermittant murmur in Maya's heart, but that info was never followed up on by other doctors. That was most likely the "PDA" that they discovered on this visit.

So experience is best for operations, but for diagnoses, I recommend letting a medical resident examine a patient. They have all the conditions fresh in their minds and are open to new info.

I will be pulling Maya duty tonight while Victoria stays with Ronald. She may update www.flickr.com/photos/gorskipics from my laptop back in the RMH room. To contact her try her cell or e-mail Victoria.Gorski@gmail.com. Also videos are posted at http://video.google.com/videosearch?q=Chris+Gorski&num=10&so=1&start=0

-Chris

Pictures of Maya post-op

Brianna look - Maya has a stegosaurus blood pressure cuff - how lucky!

Here are pictures of Maya's war wounds.

To contact Victoria please use her new E-mail address: Victoria.Gorski@gmail.com

Or for Chris the good ol' Seekerhiker@hotmail.com

She got to suck down 1.5 ounces of milk tonight like she hadn't had a drink for days - she gulped like crazy for about 1 minute, then her pain was too great so we laid her her back down (we held her up to bottle-feed) and she was given some morphine. No opening of the mouth after that.

2nd update on Maya's surgery- 9pm Friday

Victoria here... it is almost 9pm, they still haven't let Maya have milk yet. The politics of the hospital and the CYA. The NICU RNs won't do anything unless it is written in a work order from the Dr. It is interesting to watch the pecking order, lots of different RNs and MDs and which ones can actual make decisions vs. others and the conflicting information they say. Like one said a few hours after surgery she could eat, now we have to wait until after 8pm and when she is alert and wanting food.

The results of the xray showed fluid in the chest cavity, according to the NICU RN, that is normal and they are not yet concerned. They are watching for respiratory distress, which she is not displaying. The next xray will be in the morning.

I am staying at the hospital again tonight. They have a sleep room for me again and I intend to go to bed earlier tonight. Chris is staying at the Ronald McDonald House again tonight. Tomorrow night, Chris is going to have hospital duty and I will stay at the RMH.

Chris and I did manage to get out and grab a bite to eat outside the hospital tonight. We ate at a whole in the wall Indian restaurant. There were a lot of security guards on the UPENN campus tonight. We think there is a big sporting event or something going on. They were searching one man's suitcase outside one of the other hospitals... strange. But it was nice to be out of the hospital and spending some time focusing on something else for a while.

Next update tomorrow morning...

Maya came out of surgery doing great!

This is Victoria. Maya was finished with surgery at 3:45pm. The surgeon met with us and told us the surgery went very well. He was able to complete it laproscopically vs. opening her up. He told us that the tumor was actually on her middle right lobe vs. her lower right lobe as they had originally thought. He said the tumor was large and hanging down blocking the view of the good lower lobe. So Maya's upper lobe and lower lobe will grow and fill in the space where the middle lobe would have been. They said there was no issue/complications from the cardiac issues (see previous blog on PDA/PFO issues).

Next steps... Maya currently has a chest tube in which has suction on to drain any fluid and/or air in her chest cavity. Later tonight they will do an xray of the chest with the tube in to see if there is any fluid or air in the chest cavity. Tomorrow if all is going well, they will remove the chest tube and do another xray to ensure there is no air and/or fluid in her chest cavity. She is currently on IV fluids and may be able to have milk tonight. They are monitoring her and if she is fussing, they will give her a bolus dosage of morphine for pain. Right now she is not fussing and is probably still on the pain drugs from surgery. They are also giving her humidified oxygen via a tube on her nose to help with the dryness in her throat from where the breathing tube was. We do not yet have an estimated discharge date yet. We will know more after the chest tube is out. We do know that they want her on antibiotics until Sunday as a precaution for the PDA/PFO as well as the chest tube.

If we get news from the xray before too late tonight, we will do another blog update today. Otherwise our next update will be tomorrow. That is unless Chris feels inspired to add on to the above ;-)

Thank you to all for your healing and prayers... they worked!
Love you all
Victoria and Chris

Maya has gone in for surgery- 11:30am

Just a quick update to share that Maya has just been wheeled in for surgery. She had a bit of a rough night last night according to the nurse, she cried a lot. (I went and slept in a sleep room from 1am-7am) They stopped letting me feed her at midnight.

We expect her to be out of surgery anytime between 1:30pm- 4:30pm. Once we get word, we will update the blog. They have PC access in the NICU for families, so since she will be recovering in the NICU, we will be near enough the PC to give an update.

Please send healing and prayers. Thanks.
Victoria and Chris

Day before surgery in Philly

Chris and I arrived in Philly yesterday late afternoon (Wednesday). We were fortunate to be able to stay at the Ronald McDonald House of Philadelphia. What an amazing place. Over 300 volunteers and almost everything donated. It is the first Ronald McDonald house and it is housed in a mansion donated by a 19th century newspaper mogel. We met a woman there who spent more of the last 9 years of her daughter's life at the Ronald McDonald House than at her own home 3 hours away, because her daughter has needed intensive treatments at the Children's Hospital of Philadelphia. Without the support of the house and it's services at $15 per night, she would be bankrupt with nowhere else to stay to be close to her daughter. They offer free food, drinks, game rooms, arts and craft classes for kids, internet access, transportation to and from the hospital, wash facilities and supplies, all for that minimal fee. And to answer your question, no you do not get happy meals or fries there, only healthy food!

Chris typing here now - Victoria is in the NICU with Maya and her friend from Philadelphia visiting while I keep our place at this public PC. Maya has had a rough day. They had to sedate her for a CT scan with contrast, and they had to stick her 4 times to get a good vein. Just like her father - weak veins that hide, poor kid. Dr. Flake (the surgeon) discussed the game plan with us this afternoon after receiving the images. He said the CCAM is approximately the same size as pre-natally, and occupies the 3rd lobe of the right ling, but rests/is attached to the diapraghm on the right size. He reiterated the importance of removing this type of CCAM, because in the case of the type that rests against the diaphragm, it has a possibility of filling with fluid and bursting later in life, which would instantly collapse her right lung.

The Dr. told us that one of two operative procedures would be used. Ideally, he will go in thorascopically (basically a laparoscope that goes into the lung area) and carefully remove the CCAM via two small incisions that avoid cutting muscles between her ribs. This type of operation is delicate and takes 4 hours or more, but results in the least pain for Maya. If he decides early on in the surgery that the removal is too complicated by the CCAM's attachment level to the good lung tissue, he will switch to an "open" procedure, in which he cuts the muscle tissue between the ribs for more working room and pulls the lung partially out of her chest to work on it. During the surgery she will be sedated to the point that her lungs will deflate, and a breathing tube will be guided into her left lung for a machine to maintain breathing for her. The open procedure is faster, and is a 2-hour operation.

After the operation, a tube is inserted into her chest cavity to monitor for air leaking from the right lung. When the lung is declared sealed (usually one or two days...) they will release her...

At least that was the plan until we heard from a cardiologist later while we were in the NICU with Maya. She told us she did an angiogram of Maya's heart and discovered that she has a "PDA" (Patent Ductus Arteriosus ) as well as a "PFO" (Patent Foramen Ovale) , both conditions which are usually resolved at birth or soon thereafter. PDA is the more serious of the two. These are sometimes nothing to worry about and the PDA when monitored may close by age one or two, or it may need surgery. They will now be monitoring her VERY closely during the CCAM surgery and after, looking for signs of fluid buildup out side of the lungs. She may need to stay longer for monitoring. If there are signs of distress due to the pressure buildup on the top of the heart due to the PDA, they may need to inject her with medicine to close the PDA or even do open-heart surgery. If nothing is done during this visit, we will need to follow up with a cardiologist to closely monitor the condition. It is stressful because the cardiologist could not give us a prognosis or a timetable, like the nice if/then scenarios we were given for the CCAM.

Victoria here again. I will be staying with Maya in the hospital tonight. Should be interesting since they are saying no feedings after midnight and maybe surgery at 7am. That is a LONG time for Maya with no food and she will be VERY CRANKY! Maybe they will change their minds when she is screaming for a long time.

So needless to say we are exhausted and with the new cardiac information, a little stressed. We will be doing our next update post surgery...

Latest news

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.