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.
Sunday, April 29, 2007
Saturday, April 28, 2007
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
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
Friday, April 27, 2007
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...
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
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
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
Thursday, April 26, 2007
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...
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...
Tuesday, April 03, 2007
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...
Sunday, March 18, 2007
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.
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.
Tuesday, March 13, 2007
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.
Friday, March 09, 2007
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!!!
Thursday, March 08, 2007
Here we go!
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
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
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
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,
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...
Sunday, February 18, 2007
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.
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.
Monday, January 22, 2007
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
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
Wednesday, January 17, 2007
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
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
Thursday, January 04, 2007
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.
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.
Thursday, December 28, 2006
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.
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.
Thursday, December 21, 2006
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
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
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