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.
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