Showing posts with label NICU. Show all posts
Showing posts with label NICU. Show all posts
9.21.2009
Maddy's Surgery
Just a quick update... Maddy's surgery has officially been rescheduled for tomorrow (9/22) morning at 7:30 am. We were told the surgery should take about 2 hours. Dr. Robertson, who did a wonderful job on her first surgery will be operating on her again. He will be re-connecting the two ends of her intestines that were created from her first surgery. We have been told recovery could take anywhere from 2 weeks to a month depending on how her system handles and digests food. We would love any thoughts and prayers for her tomorrow. She has been such a trooper and a strong little girl, we are so proud of her! I promise to update everyone tomorrow as soon as things calm down a bit.
8.12.2009
Little Troopers
Both girls are doing wonderfully and continuing to be little troopers. Madelyn is growing right along and even hit 4 lbs last night! The surgeons have tentatively planned her re-connect surgery for the week of August 22nd if all continues to go well. Georgia has been a little show off and has taken her last 12 bottles! She gets a bottle every 3 hours and needs to efficiently take all of her bottles over a 48 hour period to be able to come home. Her biggest hurdle now is keeping herself warm. In order for her to come home she needs to be able to maintain her body temperature without the help of her bed. They generally won't even begin to wean them out of their covered beds until 1800 grams and Georgia is only at 1550 grams and only generally gains 10-20 grams a night so it will be quite a while until she gets that big. But... the nurses have been slowly weaning her by gradually turning the temperature down in her bed and watching her body temperature. Her bed is currently set at 80 degrees and she is doing a great job keeping her temp up. We'll see what the doctors say today about continuing to wean her.
8.03.2009
Keep Up the Good Work Girls
Both girls are doing great! They are both gaining weight and growing right along. Last night Madelyn was 3lb 5oz and Georgia was 3lb 2oz! Georgia is doing a great job consistently taking bottles. If she keeps up the good work and continues gaining weight she will be coming home in 2-3 weeks!
Madelyn's feeds have been decreased significantly because she was having some issues with her stoma (the end of her bowel/surgery site) leaking. This has hopefully healed itself over the past few days but it is something the doctors will continue to watch. She is still getting all of the nutrients she requires through her IV fluids and is obviously doing well gaining weight as her chubby cheeks show! No surgery date yet but the surgeons are hopeful they will be able to set one next week.
As some of you may already know Craig and I also just recently purchased our first home! Nothing like making life a little bit, actually a lot bit more crazy and demanding. This has kept us very busy and we are so thankful to have great families and friends who are willing to help us out a ton. We'll be posting nursery pictures soon!
Madelyn's feeds have been decreased significantly because she was having some issues with her stoma (the end of her bowel/surgery site) leaking. This has hopefully healed itself over the past few days but it is something the doctors will continue to watch. She is still getting all of the nutrients she requires through her IV fluids and is obviously doing well gaining weight as her chubby cheeks show! No surgery date yet but the surgeons are hopeful they will be able to set one next week.
As some of you may already know Craig and I also just recently purchased our first home! Nothing like making life a little bit, actually a lot bit more crazy and demanding. This has kept us very busy and we are so thankful to have great families and friends who are willing to help us out a ton. We'll be posting nursery pictures soon!
7.25.2009
Slumber Party!
Last night Georgia visited her sister's bed... I have a feeling this is a glimpse of many future nights with giggling girls being told to go to sleep. Maddy did make some faces as if to say "um... I'm trying to sleep here" but I think she was happy to see her sister.
Can you tell who is who...?
Madelyn came off of her nasal cannula yesterday afternoon! We think maybe the girls were having a little discussion about how breathing is a lot of work.
Can you tell who is who...?
Madelyn came off of her nasal cannula yesterday afternoon! We think maybe the girls were having a little discussion about how breathing is a lot of work.
7.16.2009
What a Month
It has simultaneously been the longest and shortest month of our lives. So many things have happened that surely it could not have only been a month ago that the girls were born, it also feels like just yesterday I was trying to get a grip on the idea of them actually being here. They are amazing little bundles of joy that have flipped our worlds upside down and I can't imagine my life without them.
The respiratory team wheeled Georgia's nasal cannula out of the room yesterday. Sometimes they seem to reappear but for the time being she seems to be doing great breathing all by herself. Both girls are still doing well on feeds and just spending a lot of time growing and resting.
Happy 1 Month Birthday Girls!
Look how far we've come...
Georgia 6/16/2009....
Georgia 7/16/2009
Madelyn 6/16/2009....
Madelyn 7/16/2009
The respiratory team wheeled Georgia's nasal cannula out of the room yesterday. Sometimes they seem to reappear but for the time being she seems to be doing great breathing all by herself. Both girls are still doing well on feeds and just spending a lot of time growing and resting.
Happy 1 Month Birthday Girls!
Look how far we've come...
Georgia 6/16/2009....
Georgia 7/16/2009
Madelyn 6/16/2009....
Madelyn 7/16/2009
7.15.2009
Only Good News Here
The girls are doing great. The results from Georgia's latest head ultrasound came back showing that the swelling in her ventricles has resolved itself! They are still watching the bleeding but say everything looks stable and they couldn't hope for better.
Georgia was also being a little bit of a show off last night :O) She was showing us some great oxygen levels without her nasal cannula. She is also on what they consider full feeds and is not in need of the lipids of TPN she was receiving through her IV which means.... no more IV! Besides the monitors she was completely free of things hanging from her.
Madelyn is doing great as well. She is now up to 8ml of milk every 3 hours. Her intestines appear to be working beautifully and it is only a short time now until the surgeons will be putting all back together. She is doing well on her nasal cannula, relying on very little oxygen support.
They looker bigger and more and more beautiful every time we see them. To add to the great night, our favorite nurses Megan and Miranda made a great NICU memento for the girls and I. They made imprints of both girls' hands and feet and put them in a cute frame so that we will never forget how precious and little they were. It's nice when they are with them, I feel like Craig and I can sleep better knowing they are in good hands.
Let's hope and pray for more steps forward and more good days to come.
Georgia was also being a little bit of a show off last night :O) She was showing us some great oxygen levels without her nasal cannula. She is also on what they consider full feeds and is not in need of the lipids of TPN she was receiving through her IV which means.... no more IV! Besides the monitors she was completely free of things hanging from her.
Madelyn is doing great as well. She is now up to 8ml of milk every 3 hours. Her intestines appear to be working beautifully and it is only a short time now until the surgeons will be putting all back together. She is doing well on her nasal cannula, relying on very little oxygen support.
They looker bigger and more and more beautiful every time we see them. To add to the great night, our favorite nurses Megan and Miranda made a great NICU memento for the girls and I. They made imprints of both girls' hands and feet and put them in a cute frame so that we will never forget how precious and little they were. It's nice when they are with them, I feel like Craig and I can sleep better knowing they are in good hands.
Let's hope and pray for more steps forward and more good days to come.
7.11.2009
Growing Girls
Both girls are growing right along and doing great. Georgia was 2lb 4oz last night and Madelyn was right behind her at 2lb 2oz. Both girls are also off of their CPAPs again, for the time being. They look a little healthier and a little less wrinkly every time we see them.
We're hoping for a nice, quiet weekend. The only thing coming up as far as medical procedures is Georgia's repeat head ultrasound on Monday and we are hoping to see continued decrease in ventricle size.
Madelyn
Georgia
We're hoping for a nice, quiet weekend. The only thing coming up as far as medical procedures is Georgia's repeat head ultrasound on Monday and we are hoping to see continued decrease in ventricle size.
Madelyn
Georgia
6.25.2009
Look Mom, No CPAP!
To our amazement we walked into the NICU yesterday afternoon to see both girls free of their CPAPs! We were so happy to see their little faces and they looked so much more comfortable. Madelyn is on a regular flow nasal cannula that provides very little oxygen as support. We will find out today but her nurses didn't feel she even needed that as she kept pulling it out of her nose and was doing great without it. Georgia is on a high flow nasal cannula and was doing great on that as well.
Georgia got to get all dressed up in a cute little pink hat and pink shirt as her billy levels have gone down and she doesn't need her lights anymore. She looked so snuggly and comfortable. Hopefully Madelyn's billy levels will cooperate and she can play dress-up soon too.
Some other great news... we found out last night that we can hold the girls now. Craig and I are going to be trying what is called "skin to skin therapy" with them this evening. The girls will get to snuggle up on our chests and sleep while gaining heat from our bodies and getting to know us, we are both very excited about this.
One of our favorite nurses, Megan helped us out with a little mini photo shoot last night.
Georgia
Madelyn
Georgia
Georgia
Madelyn
Madelyn
Georgia got to get all dressed up in a cute little pink hat and pink shirt as her billy levels have gone down and she doesn't need her lights anymore. She looked so snuggly and comfortable. Hopefully Madelyn's billy levels will cooperate and she can play dress-up soon too.
Some other great news... we found out last night that we can hold the girls now. Craig and I are going to be trying what is called "skin to skin therapy" with them this evening. The girls will get to snuggle up on our chests and sleep while gaining heat from our bodies and getting to know us, we are both very excited about this.
One of our favorite nurses, Megan helped us out with a little mini photo shoot last night.
Georgia
Madelyn
Georgia
Georgia
Madelyn
Madelyn
6.24.2009
We're Here! Our first week in the NICU
Our little miracles just couldn't wait to make their appearance. Georgia Ann and Madelyn Jo were born at 3:50 and 3:53 AM on June 16, 2009 at 26 weeks 3 days gestation. Both girls weighed 1 lb. 13 oz. Georgia was 14 inches long and Madelyn was 12.5 inches long. I spent 5 weeks on bed rest at home and an additional 2.5 weeks on bed rest at the hospital. After a few hours of contractions and back labor on Monday night the doctors decided the only option was an emergency C-section. Craig made it to the hospital just in time. Both girls were taken immediately to the Neonatal Intensive Care Unit and put on ventilators. After a little recovery the nurses wheeled me down to see the girls briefly.
I will try my best to remember all that has happened in the past week but it has been a lot and has all been mixed in with a great deal of tears, stress and every other emotion possible.
Both girls started off on ventilators that were essentially breathing for them. Over the week both girls have moved on to CPAPS which allow them pressure to keep their lungs open and provide a smaller amount of oxygen while letting them breathe for themselves. The CPAP is the tubing you might see in some pictures inserted in their noses and they both hate them, I can't say I blame them. The nurses and doctors say they are both doing very well respiratory wise and will hopefully be ditching the CPAPs soon for a nasal cannula that will only provide oxygen, not pressure.
Both girls have also been on and off special lights that help to prevent jaundice. We call them their little tanning lights. Every evening they measure what is called their billy levels and determine from that whether or not the lights are necessary. While on the lights they have to wear black masks over their eyes and Georgia especially dislikes this. They look so much more comfortable without them but we are told it is very common for them to go on and off the lights for the first 10 days of life. Madelyn's light is currently off but as of last night Georgia's light was still on.
Earlier in the week a heart scan and brain ultrasound showed Georgia was having some issues. She had an irregular heartbeat that has been treated with medications and has resolved itself wonderfully. The doctors also identified a level 1 and level 2 bleed in her brain. We are told that as scary as this sounds it is really not something to worry about but something the doctors will be watching closely and should resolve itself.
Georgia also gave us some excitement earlier in the week when we were told that she had a small hole in her lung. This also is very common with premature babies but scary to us none the less. The doctors inserted a small tube in the left side of her chest to allow the air to escape and give her lung room to completely expand as it healed itself. The tube was removed after 2 days and her lungs look great now.
Georgia's current issue is an open PDA valve in her heart. This valve is open in all babies in the womb and is supposed to close naturally within 48 hours of birth. Madelyn's has closed but Georgia's has not. This valve being open can cause complications with the distribution of oxygen to her body and cause her heart to work harder than necessary. The treatment for this is ibuprofen. She will be given 2 doses of ibuprofen which has been shown to work about 60% of the time. She was given her first dose yesterday and they allow each dose 3 days to work so we should know more on the 26th. If the ibuprofen does not work the doctors will have to close the valve surgically.
Madelyn had a pretty steady week until Friday. Apparently she felt her sister was just getting too much attention and she needed to do something exciting too. Over the week the doctors had noticed what they call dilated loops in her bowels. They weren't resolving themselves and she hadn't had a bowel movement yet so they ordered a special enema that allowed an x-ray to see it travel through her bowels. After 2 unsuccessful enemas surgery was the only option. The surgeons were looking for some kind of blockage but got a little more than they bargained for. The surgeon Dr. Robertson found what is called a type 3B jejunal atresia. This is a very rare issue, there are multiple types of jejunal atresias which occur in about 1 in 5,000 babies. Of that 1 in 5,000 less than 20% have ever been identified as type 3b. Basically the a section of Madelyn's intestines were dead inside of her, they weren't getting any blood and had to be removed. She had 15cm of intestines removed. We were told that everything went very well and she has done a great job recovering. Currently each end of her intestines have been brought up to her skin as she is too small to reconnect them. After 6-8 weeks Dr. Robertson will be performing a second surgery to reconnect everything.
For the past week Craig and I have been constantly wondering "why?" Why couldn't they just have stayed in and developed longer? Could we have done something to prevent this? Well... after talking to Dr. Gelfand last night I think we both feel a little bit better about this why question. Type 3b jejunal atresia has nothing to do with prematurity. This is something Madelyn would have had even as a full term baby. This is also something they believe began about 10 weeks into my pregnancy and would have continued to progress and cause more damage the longer the gestation. Dr. Gelfand told us last night that if this had been identified through an early ultrasound it is likely they would have elected to take the babies at 26-28 weeks regardless of any signs of preterm labor. I don't know if better is the right word but it made me feel more comfortable. Our babies and God obviously knew something we didn't.
Craig and I are both very thankful to all of our family and friends that have been so supportive. We will try our hardest to keep everyone informed as we know you all love these little girls too. As much as we would like to show them off to everyone while they are so little and fragile and susceptible to infection only family is allowed to visit them and only Craig and I are allowed to touch them until they are breathing on their own. We have been told that this will be a long haul and should expect many ups and downs but they are strong little girls. We have been told that September-October is a realistic expectation of when they will be strong enough to come home. It will be a long summer but everyone's prayers and support will make it that much easier.
Georgia - on ventilator
Madelyn (on ventilator)
Madelyn and Mom
Georgia (on CPAP) and Mom
Madelyn and Dad
Georgia (on CPAP) and Mom
Georgia (with CPAP and mask for lights to decrease billy levels)
Dad and Georgia - on ventilator with mask for lights
Dad and Madelyn - on ventilator
I will try my best to remember all that has happened in the past week but it has been a lot and has all been mixed in with a great deal of tears, stress and every other emotion possible.
Both girls started off on ventilators that were essentially breathing for them. Over the week both girls have moved on to CPAPS which allow them pressure to keep their lungs open and provide a smaller amount of oxygen while letting them breathe for themselves. The CPAP is the tubing you might see in some pictures inserted in their noses and they both hate them, I can't say I blame them. The nurses and doctors say they are both doing very well respiratory wise and will hopefully be ditching the CPAPs soon for a nasal cannula that will only provide oxygen, not pressure.
Both girls have also been on and off special lights that help to prevent jaundice. We call them their little tanning lights. Every evening they measure what is called their billy levels and determine from that whether or not the lights are necessary. While on the lights they have to wear black masks over their eyes and Georgia especially dislikes this. They look so much more comfortable without them but we are told it is very common for them to go on and off the lights for the first 10 days of life. Madelyn's light is currently off but as of last night Georgia's light was still on.
Earlier in the week a heart scan and brain ultrasound showed Georgia was having some issues. She had an irregular heartbeat that has been treated with medications and has resolved itself wonderfully. The doctors also identified a level 1 and level 2 bleed in her brain. We are told that as scary as this sounds it is really not something to worry about but something the doctors will be watching closely and should resolve itself.
Georgia also gave us some excitement earlier in the week when we were told that she had a small hole in her lung. This also is very common with premature babies but scary to us none the less. The doctors inserted a small tube in the left side of her chest to allow the air to escape and give her lung room to completely expand as it healed itself. The tube was removed after 2 days and her lungs look great now.
Georgia's current issue is an open PDA valve in her heart. This valve is open in all babies in the womb and is supposed to close naturally within 48 hours of birth. Madelyn's has closed but Georgia's has not. This valve being open can cause complications with the distribution of oxygen to her body and cause her heart to work harder than necessary. The treatment for this is ibuprofen. She will be given 2 doses of ibuprofen which has been shown to work about 60% of the time. She was given her first dose yesterday and they allow each dose 3 days to work so we should know more on the 26th. If the ibuprofen does not work the doctors will have to close the valve surgically.
Madelyn had a pretty steady week until Friday. Apparently she felt her sister was just getting too much attention and she needed to do something exciting too. Over the week the doctors had noticed what they call dilated loops in her bowels. They weren't resolving themselves and she hadn't had a bowel movement yet so they ordered a special enema that allowed an x-ray to see it travel through her bowels. After 2 unsuccessful enemas surgery was the only option. The surgeons were looking for some kind of blockage but got a little more than they bargained for. The surgeon Dr. Robertson found what is called a type 3B jejunal atresia. This is a very rare issue, there are multiple types of jejunal atresias which occur in about 1 in 5,000 babies. Of that 1 in 5,000 less than 20% have ever been identified as type 3b. Basically the a section of Madelyn's intestines were dead inside of her, they weren't getting any blood and had to be removed. She had 15cm of intestines removed. We were told that everything went very well and she has done a great job recovering. Currently each end of her intestines have been brought up to her skin as she is too small to reconnect them. After 6-8 weeks Dr. Robertson will be performing a second surgery to reconnect everything.
For the past week Craig and I have been constantly wondering "why?" Why couldn't they just have stayed in and developed longer? Could we have done something to prevent this? Well... after talking to Dr. Gelfand last night I think we both feel a little bit better about this why question. Type 3b jejunal atresia has nothing to do with prematurity. This is something Madelyn would have had even as a full term baby. This is also something they believe began about 10 weeks into my pregnancy and would have continued to progress and cause more damage the longer the gestation. Dr. Gelfand told us last night that if this had been identified through an early ultrasound it is likely they would have elected to take the babies at 26-28 weeks regardless of any signs of preterm labor. I don't know if better is the right word but it made me feel more comfortable. Our babies and God obviously knew something we didn't.
Craig and I are both very thankful to all of our family and friends that have been so supportive. We will try our hardest to keep everyone informed as we know you all love these little girls too. As much as we would like to show them off to everyone while they are so little and fragile and susceptible to infection only family is allowed to visit them and only Craig and I are allowed to touch them until they are breathing on their own. We have been told that this will be a long haul and should expect many ups and downs but they are strong little girls. We have been told that September-October is a realistic expectation of when they will be strong enough to come home. It will be a long summer but everyone's prayers and support will make it that much easier.
Georgia - on ventilator
Madelyn (on ventilator)
Madelyn and Mom
Georgia (on CPAP) and Mom
Madelyn and Dad
Georgia (on CPAP) and Mom
Georgia (with CPAP and mask for lights to decrease billy levels)
Dad and Georgia - on ventilator with mask for lights
Dad and Madelyn - on ventilator
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