Thursday, February 24, 2011
Thursday, February 17, 2011
The Tooth of the Matter
My mom and I visited Donny at the hospital on Tuesday. The doctors and nurses said they thought Donny was teething because he was drooling a lot. I just thought they were idiots. I was telling this story to Zack's teachers at daycare today. She thought they were idiots too. Then I looked in Zack's mouth and what do I see? Two mandibular central incisors just under his gums. I know he was born 3 months ago, but he really is the equivalent of 6 weeks old! He isn't even old enough to hold a teether or have a biscuit! Zack looked at me and said, "You know since the day we were conceived we like to keep you on your toes!"
Wednesday, February 9, 2011
Donny Update
Donny final made weight to be re evaluated by the surgeon. The latest scan shows his stomach has a capacity of a teaspoon which is extremely small. He also discovered that his small intestines are in his chest cavity so he may have a diaphramatic hernia as well. The surgeon is proposing a experimental surgery that would divide his stomach in half. The bottom half with have an expander and a tube placed to feed. The top half is disconnected so he cannot reflux. He has done this once before. After the surgery he will still have to spend several months in the hospital. If it goes as planned the stomach will be reconnected. The hope is eventualy he may be able to grow and eat a little by mouth. He will probably always have to supplement with tube feeding. It will be probably about a month before the viruses are cleared from his system and he can have surgery. He is such a sweet little guy and I hope he grows big and strong.
Sunday, December 19, 2010
The First Transport is Away!
Well, our first kiddo, Zack, came home on Thursday. Because he was still having a few slow heart rate events he came home with an apnea monitor. His heart rate really will only slow once a day, but the siren the monitor puts out jolts him right out. Mostly it just puts out a siren when the wires are loose. We didn't expect him to come home in snow! Made our trip longer but thankfully uneventful. The first night he only woke us a few times. He must have been breaking us in. The second night- wow- he wanted to party all night! The third night he was the best :)
On Saturday morning he met his cousins Dee Dee and Ainsley. They brought him some some of their baby gear that they are must too big for now that they are almost four. Zack loves his new ocean themed bouncer. In fact he is in it right now!
We also took a trip to see his brother Donny at the CHOP NICU. It was nice to be able to all sit together now that Zack is not in a crib across the room. Zack also visited the nurses in the Special Delivery Unit that took care of Mommy while he was being incubated.
Donny's condition has now stabilized enough that the docs can now start investigating how we are going to manage his care once he leaves the hospital. He is now on nasal cannula at 23% oxygen, we breath 21%. He does not like 21%- he likes 23%- so picky! He had an upper GI series of CT the other day. It revealed that he does have a small stomach contributing to a lot of reflux. A small stomach is something that is often seen in little ones born with one lung. The docs feel that the reflux is contributing to his very fast breathing. They moved his feeding tube from his stomach to the first part of his intestine. The also changed a bigger feeding every three hours to a continuous slower feed. His breathing rate has slowed to a much more normal level. They also found a very tiny amount of left lung tissue (the one he is missing). Next week he will go for a bronchscopy with the surgeons to see if there are any abnormal connections between his pulmonary and digestive systems. Long term, he may have a surgical procedure that tightens the connection between his esophagus and stomach to prevent as much reflux.
Today, Zack will meet his great grandparents! He will also watch his first Giants vs Eagles game. Daddy will teach him to be a Giants fan even though he spent most of his life so far in Philly!
On Saturday morning he met his cousins Dee Dee and Ainsley. They brought him some some of their baby gear that they are must too big for now that they are almost four. Zack loves his new ocean themed bouncer. In fact he is in it right now!
We also took a trip to see his brother Donny at the CHOP NICU. It was nice to be able to all sit together now that Zack is not in a crib across the room. Zack also visited the nurses in the Special Delivery Unit that took care of Mommy while he was being incubated.
Donny's condition has now stabilized enough that the docs can now start investigating how we are going to manage his care once he leaves the hospital. He is now on nasal cannula at 23% oxygen, we breath 21%. He does not like 21%- he likes 23%- so picky! He had an upper GI series of CT the other day. It revealed that he does have a small stomach contributing to a lot of reflux. A small stomach is something that is often seen in little ones born with one lung. The docs feel that the reflux is contributing to his very fast breathing. They moved his feeding tube from his stomach to the first part of his intestine. The also changed a bigger feeding every three hours to a continuous slower feed. His breathing rate has slowed to a much more normal level. They also found a very tiny amount of left lung tissue (the one he is missing). Next week he will go for a bronchscopy with the surgeons to see if there are any abnormal connections between his pulmonary and digestive systems. Long term, he may have a surgical procedure that tightens the connection between his esophagus and stomach to prevent as much reflux.
Today, Zack will meet his great grandparents! He will also watch his first Giants vs Eagles game. Daddy will teach him to be a Giants fan even though he spent most of his life so far in Philly!
Wednesday, December 1, 2010
Mommy on the Mend, Kids are superstars.
So, I've been promising an update and I think I finally have the strength to do it.
Zachary Alexander and Donald Aaron were bone November 19, 2010 at 1:50 and 1:51 respectively. Zach was 5 lbs 2 oz and Don 4 lbs 5 oz. We moved up their birthday by a few days because I had been developing pre ecclampsia signs for several days and the docs could not wait for me to get any sicker. Basically my blood pressures were climbing higher and higher, i was gaining about 2 pounds of water a day. I started visual disturbances- flashing lights- think aura before migraine on steroids. I gave Will a call and said "Its birthday time!" Then I called my mom- she said she had to put some food in the fridge and then she would be over. The section was then planned for about noon so Will could get there in time.
IVs were started. Both Will and my mom made it in plenty of time. Later I was brought back to the OR and extremely nervous. I felt a lot better when I was numbed up. I started to relax. Eventually they let Will in. He held my hand and was great. Zack came out first and I heard a little cry and it was awesome. Then Donny but he was quiet. The OBs described their umbilical cords from Medusa's head, to a pretzel, to an octopus. They had been tangled since 10 weeks and survived everyone's expectations. I didn't feel that great after that, but it might have been the addition of medicine for nausea.
They took me back to the room and eventually the babies came by. Unfortunately I don't really remember much besides little Donny grabbing my hand and wanting them to go so I could rest. Then apparently some not so good stuff happened. I began to hemorrhage. I'm not even sure on the details myself. All I know is I went from being kinda hot and needing lots of ice chips to being the coldest I ever felt in my life. I was shivering so bad. They are pretty spot on in the movies when they describe it as going blacker and blacker.
I was rushed back into the OR what I was told was about 3 hours later. To me it felt like 5 min. I was given a second surgery to remove some excess bleeding tissues. I was also given 4 units of blood and 3 units of plasma/platelets. I was left in a lot of pain and thirsty from the ordeal but I thought at least I was getting better. Unfortunately, the next few days after the surgery my blood pressures continued to climb and climb. I was still retaining water. I felt the water entering my lungs- like i was drowning. The alarms on my monitors would go off all night from the high BP and low pulse O2. The docs think i have sleep apnea on top of it all because every time i would fall asleep i would wake my self from lack of oxygen. I stayed and extra day and was sent home with Beta blockers for my blood pressures. It was the day before thanksgiving. Will and I decided that we would just take Thanksgiving for ourselves and come back Friday when more rested to see the kids. The OB team said to stop by for a BP check that day.
Will brought me home. We were both surprised on home much I really still needed him to do most everything. My legs were so swollen I could not lift them. We are not talking normal post partum swelling but something around 10 times what is normal. I almost blew off our trip on Friday because I felt so terrible. Its a good thing I didn't.
After a pretty painful trip into Philly, the first thing we did was stop over to the OB unit to have my BP checked. It was something like 223/119. That, and my swollen state prompted the doc to come over right away. I asked if I could at least see the kids for a few moments and she flat out said no. Things began to happen pretty quickly from there.
The Hospital of University of Penn (HUP) is directly next to and connected to CHOP. I was marched directly to their labor and delivery dept with 2 security guards, a nurse, midwife and OB. I was put in a room and told we had to start the Magnesium Sulfate drip now and then we will explain what is going on. I was in so much pain at this point. My belly felt tight and hard, My arms were already pin cushions and bruised from the week before. I think I had 7 IVs in them at once the last admission. I howled and carried on and anesthesia was called to place the IV. They used a TB test needle to give me a little lidocaine to make placement easier. Then a portable chest xray was taken to confirm the water in my lungs. The Magnesium Sulfate (Mag) is used to slow all smooth muscle function in the body so that the BP can come down. Also means no eating or drinking for 24 hours. I already had not eaten much because i didn't feel well that day. Over the next night I lost 8L of urine. That is 4 soda bottles! I looked a little better already. I was transferred to a less critical floor, my BP was monitored and I continued to lose fluid. My hard and painful belly was still of great concern. I was taken to CT and it was determine that I also had a hematoma and cellulitis in my abdomen. I was started on IV antibiotics and my blood pressure medicine was changed. Everyday (I was there for four) I started to feel a little better and a little more normal. I was surprised that the head of the OB/GYN department of U Penn came to visit me. She wanted to see how I was doing, but it was more than just a social visit. I was told that I should not have anymore children because I risk getting very sick again. I'm ok with not having anymore children but its kinda sad that the possibility is gone.
The kids are doing soooo well!!! At least I was able to go to nicu and see the kids more often because the hospitals are connected. Zack is down to just a nasal cannula on room air and is learning to drink from a bottle. Once he does that- he can go home!!! Donny despite having one lung is the fighter I knew he would be. His is still inubated but the nurses say it is doing minimal work. They are going to consult with the surgeon that will be evaluating his condition to see if he wants the tube left in for bronchoscopy. They want to stick a little camera down his trachea to see what is going on structurally. The nurses have often said that he is dealing with one large lung instead of two smaller ones. They both have a strong grips. And look like mommy :)
Zachary Alexander and Donald Aaron were bone November 19, 2010 at 1:50 and 1:51 respectively. Zach was 5 lbs 2 oz and Don 4 lbs 5 oz. We moved up their birthday by a few days because I had been developing pre ecclampsia signs for several days and the docs could not wait for me to get any sicker. Basically my blood pressures were climbing higher and higher, i was gaining about 2 pounds of water a day. I started visual disturbances- flashing lights- think aura before migraine on steroids. I gave Will a call and said "Its birthday time!" Then I called my mom- she said she had to put some food in the fridge and then she would be over. The section was then planned for about noon so Will could get there in time.
IVs were started. Both Will and my mom made it in plenty of time. Later I was brought back to the OR and extremely nervous. I felt a lot better when I was numbed up. I started to relax. Eventually they let Will in. He held my hand and was great. Zack came out first and I heard a little cry and it was awesome. Then Donny but he was quiet. The OBs described their umbilical cords from Medusa's head, to a pretzel, to an octopus. They had been tangled since 10 weeks and survived everyone's expectations. I didn't feel that great after that, but it might have been the addition of medicine for nausea.
They took me back to the room and eventually the babies came by. Unfortunately I don't really remember much besides little Donny grabbing my hand and wanting them to go so I could rest. Then apparently some not so good stuff happened. I began to hemorrhage. I'm not even sure on the details myself. All I know is I went from being kinda hot and needing lots of ice chips to being the coldest I ever felt in my life. I was shivering so bad. They are pretty spot on in the movies when they describe it as going blacker and blacker.
I was rushed back into the OR what I was told was about 3 hours later. To me it felt like 5 min. I was given a second surgery to remove some excess bleeding tissues. I was also given 4 units of blood and 3 units of plasma/platelets. I was left in a lot of pain and thirsty from the ordeal but I thought at least I was getting better. Unfortunately, the next few days after the surgery my blood pressures continued to climb and climb. I was still retaining water. I felt the water entering my lungs- like i was drowning. The alarms on my monitors would go off all night from the high BP and low pulse O2. The docs think i have sleep apnea on top of it all because every time i would fall asleep i would wake my self from lack of oxygen. I stayed and extra day and was sent home with Beta blockers for my blood pressures. It was the day before thanksgiving. Will and I decided that we would just take Thanksgiving for ourselves and come back Friday when more rested to see the kids. The OB team said to stop by for a BP check that day.
Will brought me home. We were both surprised on home much I really still needed him to do most everything. My legs were so swollen I could not lift them. We are not talking normal post partum swelling but something around 10 times what is normal. I almost blew off our trip on Friday because I felt so terrible. Its a good thing I didn't.
After a pretty painful trip into Philly, the first thing we did was stop over to the OB unit to have my BP checked. It was something like 223/119. That, and my swollen state prompted the doc to come over right away. I asked if I could at least see the kids for a few moments and she flat out said no. Things began to happen pretty quickly from there.
The Hospital of University of Penn (HUP) is directly next to and connected to CHOP. I was marched directly to their labor and delivery dept with 2 security guards, a nurse, midwife and OB. I was put in a room and told we had to start the Magnesium Sulfate drip now and then we will explain what is going on. I was in so much pain at this point. My belly felt tight and hard, My arms were already pin cushions and bruised from the week before. I think I had 7 IVs in them at once the last admission. I howled and carried on and anesthesia was called to place the IV. They used a TB test needle to give me a little lidocaine to make placement easier. Then a portable chest xray was taken to confirm the water in my lungs. The Magnesium Sulfate (Mag) is used to slow all smooth muscle function in the body so that the BP can come down. Also means no eating or drinking for 24 hours. I already had not eaten much because i didn't feel well that day. Over the next night I lost 8L of urine. That is 4 soda bottles! I looked a little better already. I was transferred to a less critical floor, my BP was monitored and I continued to lose fluid. My hard and painful belly was still of great concern. I was taken to CT and it was determine that I also had a hematoma and cellulitis in my abdomen. I was started on IV antibiotics and my blood pressure medicine was changed. Everyday (I was there for four) I started to feel a little better and a little more normal. I was surprised that the head of the OB/GYN department of U Penn came to visit me. She wanted to see how I was doing, but it was more than just a social visit. I was told that I should not have anymore children because I risk getting very sick again. I'm ok with not having anymore children but its kinda sad that the possibility is gone.
The kids are doing soooo well!!! At least I was able to go to nicu and see the kids more often because the hospitals are connected. Zack is down to just a nasal cannula on room air and is learning to drink from a bottle. Once he does that- he can go home!!! Donny despite having one lung is the fighter I knew he would be. His is still inubated but the nurses say it is doing minimal work. They are going to consult with the surgeon that will be evaluating his condition to see if he wants the tube left in for bronchoscopy. They want to stick a little camera down his trachea to see what is going on structurally. The nurses have often said that he is dealing with one large lung instead of two smaller ones. They both have a strong grips. And look like mommy :)
Tuesday, October 12, 2010
28 Weeks Hospital Admission
Well, the kiddos have made it to viability! So I checked in with Will this morning to the labor and delivery unit. I have a suite and have room service. Nice! I have my computer set up with web cam so if anyone has G chat or skype let me know :) The docs recommend i spend most of the time resting but I am able to go out and about the hospital every once in awhile. Will and I can order in from local restaurants on the weekends.
The plan- Fetal heart rate monitored for 30-60 min 3 times a day. I will have doppler ultrasound every other day. Growth Ultrasound every three weeks. We are still aiming for 34 weeks at Thanksgiving! They will be delivered by C- section.
Seems like I get spotty cell phone reception here. Its like Merrill Lynch for those who are in the know. I have figured out a way to call through the computer so I will try to check messages and get back to people. The best way to contact me is email. kimsilvdmd@gmail.com
As far as visiting- I welcome visitors, but let me know you are coming ahead of time. I will provide better directions than google maps, map quest or GPS. Parking can get expensive- max of $16 after 3 hours. Only Will can get the spouse discount. Carpool helps :)
I'll try to keep all posted.
The plan- Fetal heart rate monitored for 30-60 min 3 times a day. I will have doppler ultrasound every other day. Growth Ultrasound every three weeks. We are still aiming for 34 weeks at Thanksgiving! They will be delivered by C- section.
Seems like I get spotty cell phone reception here. Its like Merrill Lynch for those who are in the know. I have figured out a way to call through the computer so I will try to check messages and get back to people. The best way to contact me is email. kimsilvdmd@gmail.com
As far as visiting- I welcome visitors, but let me know you are coming ahead of time. I will provide better directions than google maps, map quest or GPS. Parking can get expensive- max of $16 after 3 hours. Only Will can get the spouse discount. Carpool helps :)
I'll try to keep all posted.
Friday, October 1, 2010
26 1/2 week update
The kids flipped places! I don't know how but now A is on the left and B is on the right. B is breech again. But this is all good news because they are not kinking their blood supply now. So their acrobatics have paid off. No growth measurement since i was just there last week.
The plan now is to be admitted Oct 12 at 9am. They will run some tests that day and I guess I will get settled.
When I got home the midwife called and said my glucose tolerance test was elevated so now I have to do the three hour test. They actually attempted to get my regular OB to do that test. I laughed and said they treat me like a ten foot pole patient- good luck. I tried to persuade them to let me take it when I am admitted, but they said they want it sooner. So now I have to sit in Lab Corp for over three hours. Yuck!!! Hopefully it will turn out better this time. Although I think my diet would be more controlled in the hospital.
The plan now is to be admitted Oct 12 at 9am. They will run some tests that day and I guess I will get settled.
When I got home the midwife called and said my glucose tolerance test was elevated so now I have to do the three hour test. They actually attempted to get my regular OB to do that test. I laughed and said they treat me like a ten foot pole patient- good luck. I tried to persuade them to let me take it when I am admitted, but they said they want it sooner. So now I have to sit in Lab Corp for over three hours. Yuck!!! Hopefully it will turn out better this time. Although I think my diet would be more controlled in the hospital.
Friday, September 24, 2010
25 1/2 week update
Today was not an easy day at CHOP. I'll start with the good news. Both kids are growing. In fact B is catching up to A and they are both head down. A weighs 1 pound 14 oz (up 6 oz) and B is 1 pound 12 oz (up 8 oz). In general blood flow is still OK. The cords get more tangled by the week. Now the problem- every once in awhile one kid pulls on the cord and the blood flow stops and reverses. It happens intermittently and flow is restored. I get scared because it is not like it is going to get better in the coming weeks. They would like to see me next week to check on them again.
We met with a NICU doctor to explain what to expect at different levels of prematurity. Based upon different expected outcomes with have decided with stick with the plan to not even think about delivery before 28 weeks. At that point the baby with normal anatomy has an excellent chance of survival. The baby with one lung does not have a chance of survival before that point. Of course the ultimate goal would be to have them be delivered at 34-35 weeks as the two do not show signs of distress. Even if we make it to that point, the baby with the pulmonary defect with most likely have to remain in the hospital for quite awhile. One of the possibilities is the baby may be sent home with a tracheotomy, breathing tube placed in the neck directly into the trachea. Many of these babies have this placed for up to two years of their life. If this is the case we may have to arrange for around the clock monitoring for the babies. In other words someone must have eyes on the baby at all time not just sleep in the same room. At this point it is all speculation. We cannot be sure of more likely outcome until they are born. I'm not scared of the risk of scoliosis, asthma, reflux or even the tracheotomy. I worry about having lack of oxygen leading to brain injury. After working at Kuser for even a short time- thinking my child could live a life of some of those I see is heartbreaking.
We toured the NICU and some other parts of the hospital. We saw another couple that had one twin in the NICU and the healthier twin in the stroller. Looks like most of my day is free to do whatever I want. They really will only be monitoring me once a day. There is laundry facility which is nice. I'm sure I will watch every Disney movie in the library. Hopefully the time won't pass too slowly. I know not many can visit, but calls and emails will brighten my day.
We met with a NICU doctor to explain what to expect at different levels of prematurity. Based upon different expected outcomes with have decided with stick with the plan to not even think about delivery before 28 weeks. At that point the baby with normal anatomy has an excellent chance of survival. The baby with one lung does not have a chance of survival before that point. Of course the ultimate goal would be to have them be delivered at 34-35 weeks as the two do not show signs of distress. Even if we make it to that point, the baby with the pulmonary defect with most likely have to remain in the hospital for quite awhile. One of the possibilities is the baby may be sent home with a tracheotomy, breathing tube placed in the neck directly into the trachea. Many of these babies have this placed for up to two years of their life. If this is the case we may have to arrange for around the clock monitoring for the babies. In other words someone must have eyes on the baby at all time not just sleep in the same room. At this point it is all speculation. We cannot be sure of more likely outcome until they are born. I'm not scared of the risk of scoliosis, asthma, reflux or even the tracheotomy. I worry about having lack of oxygen leading to brain injury. After working at Kuser for even a short time- thinking my child could live a life of some of those I see is heartbreaking.
We toured the NICU and some other parts of the hospital. We saw another couple that had one twin in the NICU and the healthier twin in the stroller. Looks like most of my day is free to do whatever I want. They really will only be monitoring me once a day. There is laundry facility which is nice. I'm sure I will watch every Disney movie in the library. Hopefully the time won't pass too slowly. I know not many can visit, but calls and emails will brighten my day.
Monday, September 20, 2010
Tuesday, September 14, 2010
24 week update
Today is 24 weeks! Some of the maternity leave activities include signing the boys up for daycare! I found a wonderful small school right in East Windsor that seems just perfect. I have also found a yahoo group called "one lung wonders" and have read some encouraging stories. One woman has a ten month old that has exactly what little B has. The heart occupies the entire left side of the chest and only has a right lung. So far the little girl has been doing well. She had a surgery at birth to relieve some pressure that the aorta was pressing on her trachea. She has some minor vertbrae issues and some gastric issues but is crawling around and most of the time mom can't believe she isn't 100%. Another encouraging story I read was an 18 year old girl who is capt of her high school cheering squad. Now that takes some lung power!
Friday was our "transfer of care" visit. First we had our biweekly ultrasound. The little guys are growing! Baby A was 15 oz two weeks ago and was up to one pound 8 oz. Baby B was 13 oz and was up to one pound 4 oz. The babies are at a 25% weight difference but I was told it is more important that they are both growing well. The cords are more tangled but the blood flow is still there. So they are as good as can be expected. They are kicking me like crazy. I feel A more than B but they said that may be due to my anatomy.
Next we met with the midwife to see where I would be staying when I am admitted in about 4 weeks. There are two rooms in which moms can stay if they need to be monitored before the babies are born. There is one room if mom is brought in when baby is born. One operating room and one room where they bring the little guys for assesment after birth. The actual NICU is downstairs from the "maternity" area. It was empty and sooooo quiet when we were there. Labor and delivery is not the norm in this hospital. The room that I will be staying in is nice. It is a private room with fold out couch and private bath. I guess the good news is that I am allowed visitored 24-7. The bad news is that I am so far away from everyone. Once the babies are born, Will and I are allowed to see them anytime we want. The babies may only have 2 orther visitors at time until 8pm.
We will be returning to CHOP Friday September 24. They say we will see the NICU and meet with some other staff besides our usual ultrasound.
Around the house, we have cleaned out the babies' room. The car seats, stroller and twin pack and play have come in. We have ordered the furniture for the room. Only one crib for now. They probably can share for awile. So we are trying to firm up what we can around the house before I go to the hospital. Trying to see people before I go in. Life is going to change in about 10 weeks!!!! The most memorable Thanksgiving ever :)
Friday was our "transfer of care" visit. First we had our biweekly ultrasound. The little guys are growing! Baby A was 15 oz two weeks ago and was up to one pound 8 oz. Baby B was 13 oz and was up to one pound 4 oz. The babies are at a 25% weight difference but I was told it is more important that they are both growing well. The cords are more tangled but the blood flow is still there. So they are as good as can be expected. They are kicking me like crazy. I feel A more than B but they said that may be due to my anatomy.
Next we met with the midwife to see where I would be staying when I am admitted in about 4 weeks. There are two rooms in which moms can stay if they need to be monitored before the babies are born. There is one room if mom is brought in when baby is born. One operating room and one room where they bring the little guys for assesment after birth. The actual NICU is downstairs from the "maternity" area. It was empty and sooooo quiet when we were there. Labor and delivery is not the norm in this hospital. The room that I will be staying in is nice. It is a private room with fold out couch and private bath. I guess the good news is that I am allowed visitored 24-7. The bad news is that I am so far away from everyone. Once the babies are born, Will and I are allowed to see them anytime we want. The babies may only have 2 orther visitors at time until 8pm.
We will be returning to CHOP Friday September 24. They say we will see the NICU and meet with some other staff besides our usual ultrasound.
Around the house, we have cleaned out the babies' room. The car seats, stroller and twin pack and play have come in. We have ordered the furniture for the room. Only one crib for now. They probably can share for awile. So we are trying to firm up what we can around the house before I go to the hospital. Trying to see people before I go in. Life is going to change in about 10 weeks!!!! The most memorable Thanksgiving ever :)
Friday, August 27, 2010
And it's good!
Good visit at CHOP today. The babies are getting big! 13oz and 15oz which is only 8% difference. They look to have within a 20% difference. Good blood flow through the cords. We will return in two weeks to finalize hospital plans.
Monday, August 23, 2010
Oy Vey Genetics!
I just received a call from the maternal fetal medicine nurse at St. Peter's. Turns out that I am a carrier for a "Jewish" genetic disease. It is an abnormality of the 9th chromosome. Leads to what is called Riley Day Syndrome. There looks to a good explanation on this web page http://healthguide.howstuffworks.com/riley-day-syndrome-dictionary.htm
So now Will is tested to see if he is a carrier as well. Never thought I would be so over joyed I did not marry a jewish man ;) Apparently it is very rare in the general population. Let us all keep our fingers crossed!
So now Will is tested to see if he is a carrier as well. Never thought I would be so over joyed I did not marry a jewish man ;) Apparently it is very rare in the general population. Let us all keep our fingers crossed!
Thursday, August 19, 2010
Visit to St Peters Today
Ah bright and early! 7:30 am appt at St. Peter's. All mom's parts look good for keeping the babies in. The doppler shows good blood flow to each of the babies. They are getting so big. I couldn't help myself but to say "hi bubbies" and smile when I saw them. The final results of the amnio came in and they are all normal!
My regular doctor is on vacation so I met with the covering doc. He is one of the few MD geneticists in NJ. He feels that although the missing lung most likely does not have anything to do with genetics he would like to investigate the cells collected from the amnio further. Now they can test for what is called "micro arrays" within the genetic code. This looks even closer at the chromosomes that what is seen in a normal amnio. This detects minor additions and subtractions in the genetic code. My blood was taken as well to analyze whether I am a carrier for genetic problems.
So next visits- Aug 27 at CHOP for doppler to monitor blood flow to babies and amniotic fluid volume
(this will be done every 2wks right now and growth monitored every 3-4 wks)
Aug 31 at my general OB for montly checkup
I am working on getting the sonorgram pics up but for some reason it is not loading. I got plenty of time to figure it out now that my days are dental free!
My regular doctor is on vacation so I met with the covering doc. He is one of the few MD geneticists in NJ. He feels that although the missing lung most likely does not have anything to do with genetics he would like to investigate the cells collected from the amnio further. Now they can test for what is called "micro arrays" within the genetic code. This looks even closer at the chromosomes that what is seen in a normal amnio. This detects minor additions and subtractions in the genetic code. My blood was taken as well to analyze whether I am a carrier for genetic problems.
So next visits- Aug 27 at CHOP for doppler to monitor blood flow to babies and amniotic fluid volume
(this will be done every 2wks right now and growth monitored every 3-4 wks)
Aug 31 at my general OB for montly checkup
I am working on getting the sonorgram pics up but for some reason it is not loading. I got plenty of time to figure it out now that my days are dental free!
Wednesday, August 18, 2010
Time Line
Week 4- We're Pregnant!
Week 5- Nasty, nasty cold.
Week 6- My pants are tight. I need maternity clothes, already?!
Week 7- Leaving for Greece and its TWINS
Week 10- Identical twins, maybe mono/mono what?
Week 12- They are conjoined- just kidding! Mono/mono twins confirmed. Mom needs to be hospitalized at 23 weeks at Jersey Shore Medical Center.
Later Week 12- No we don't want just the specialist to handle your case. We will switch you to St. Peter's Hospital.
Week 15- Sciatic nerve pain begins. These long days are killing me. Mom doesn't need to be hospitalized at St Peter's until 24-25 weeks.
Week 16- Congratulations! Two Boys! Oh but one has the heart in the wrong place. This could be three things 1. a mass 2. missing lung 3. diaphramatic hernia.
Week 18- The heart is still in the wrong place. Probably diaphramatic hernia. Mom needs amnio. The kids bat the needle away. Please go to CHOP for MRIs and further testing.
Week 19- Bronchitis!!! A day at CHOP. One hour for MRI. Two 2 hour sonograms. Genetic counseling. Mom should deliver at CHOP.
Week 20- Tell the powers that be I cannot work anymore. They call me into work anyway. Spend two hours on the phone coordinating prenatal appointments.
Anticipated hospitalization 28 weeks.
Anticipated delivery 34 weeks
Anticipated love for these two guys- forever!!
Week 5- Nasty, nasty cold.
Week 6- My pants are tight. I need maternity clothes, already?!
Week 7- Leaving for Greece and its TWINS
Week 10- Identical twins, maybe mono/mono what?
Week 12- They are conjoined- just kidding! Mono/mono twins confirmed. Mom needs to be hospitalized at 23 weeks at Jersey Shore Medical Center.
Later Week 12- No we don't want just the specialist to handle your case. We will switch you to St. Peter's Hospital.
Week 15- Sciatic nerve pain begins. These long days are killing me. Mom doesn't need to be hospitalized at St Peter's until 24-25 weeks.
Week 16- Congratulations! Two Boys! Oh but one has the heart in the wrong place. This could be three things 1. a mass 2. missing lung 3. diaphramatic hernia.
Week 18- The heart is still in the wrong place. Probably diaphramatic hernia. Mom needs amnio. The kids bat the needle away. Please go to CHOP for MRIs and further testing.
Week 19- Bronchitis!!! A day at CHOP. One hour for MRI. Two 2 hour sonograms. Genetic counseling. Mom should deliver at CHOP.
Week 20- Tell the powers that be I cannot work anymore. They call me into work anyway. Spend two hours on the phone coordinating prenatal appointments.
Anticipated hospitalization 28 weeks.
Anticipated delivery 34 weeks
Anticipated love for these two guys- forever!!
Introduction
I wanted to have a way for people to be informed about what is happening with the twins. I figured this was an easy way to keep up for those who want to be informed.
Little A and Little B are mono zygotic/ mono amniotic twins. This means that they are identical twins within the same amniotic sac. These types of twins account for 1% of all identical twins. Identical twins are not hereditary and the exact cause is unknown. I think it is from standing in front of the x-ray machine at work and that is why I call them the "X-men."
I always had a hunch that they were boys from the way I see them kick and punch each other at each sonogram. At this point it is confirmed- they are two boys.
Last week we did find out that Little B has only one lung. This condition, unilateral pulmonary agenesis, is also extremely rare. The good news is you can live with one lung. Complications can range from minor to major, but we are hoping for the best!
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