Everyday we continue to get more news, both good and not so good. On Wednesday, we found out that the CMV (Cytomegalovirus) is in Brooke's lungs. This will hopefully not cause any long term damage, but does mean that she will probably be on the ventilator longer than we had hoped.
In good news, we found out yesterday that her ductus has closed! This is great news because she is able to get off of that medicine. While she was on it, she wasn't able to eat and was definitely frustrated by that. So today they started her back on feedings and she seems happier again. They are increasing her feedings to 14mL, so hopefully she gets back to gaining some weight.
Her lungs have been working hard over the past few days. One of the main ways we measure if she is doing well is by the saturation of oxygen in her lungs. Ideally, the number is over 90%. She has had some trouble staying at that level this week and had her biggest 'desat' - all the way down to 10%. They made adjustments as necessary, including giving her another blood transfusion and lots of extra oxygen. Today she is doing much better and seems more comfortable. One of the ways they get her to the optimal saturation level is by putting her in different positions. She is definitely happiest when she is on her belly with her little butt up in the air! So cute!!
Saturday, February 20, 2010
Tuesday, February 16, 2010
Growing big and strong!
Brooke just keeps on growing and they have been able to increase her feeds to 11 mL every 3 hours. She is now 1050 grams (2 lbs 5.5 oz), which is 200 grams above her birth weight. Both Jason and I thought she looked a lot bigger today... she is really filling out! I added some pictures today so that you can see how she is changing.
Unfortunately, there is some not so good news too. Brooke's ductus venosus has not closed. The ductus venosus is in the heart and is open in the fetus to help with getting oxygen where it is needed. However, it is supposed to close after birth and Brooke's has not yet closed. This is apparently common with premature babies. Brooke begins medicine today to help close the ductus which will hopefully work so she doesn't have to have surgery.
Brooke also had an eye exam with an ophthalmologist today and he did not see any effects of CMV in her eyes. So, this was good news.
As for her lungs and breathing, she is still fighting. They are making adjustments to the ventilator hourly. They did have to start massaging her lungs every 6 hours to make sure that the oxygen is saturating the sacs fully. Dr. Derrick said today that closing the ductus venosus may help with her lung function because it will correct the flow of oxygenated blood. Here's hoping...
Unfortunately, there is some not so good news too. Brooke's ductus venosus has not closed. The ductus venosus is in the heart and is open in the fetus to help with getting oxygen where it is needed. However, it is supposed to close after birth and Brooke's has not yet closed. This is apparently common with premature babies. Brooke begins medicine today to help close the ductus which will hopefully work so she doesn't have to have surgery.
Brooke also had an eye exam with an ophthalmologist today and he did not see any effects of CMV in her eyes. So, this was good news.
As for her lungs and breathing, she is still fighting. They are making adjustments to the ventilator hourly. They did have to start massaging her lungs every 6 hours to make sure that the oxygen is saturating the sacs fully. Dr. Derrick said today that closing the ductus venosus may help with her lung function because it will correct the flow of oxygenated blood. Here's hoping...
Saturday, February 13, 2010
Two steps forward, one step back...
Everyone describes having a child in the ISCU in this way... a roller coaster ride where we will take two step forwards and one step back. Unfortunately, Brooke is going to have a long ride.
Good news first... Brooke has gained some weight. She is now 950 grams, which is almost 2 lbs 2 oz. They are increasing her food everyday and later today plan on giving her 6mL for the first time. She isn't always processing all of her food, but is processing most of it and keeps on pooping... definitely a good sign.
As for her lungs and breathing, she is pretty much the same. They are really hoping to get her off of the ventilator soon and keep making adjustments to the pressure, rate, and oxygen level to try to get her there. Unfortunately, her lungs are still a bit too small, but Dr. Derrick said we need to see her grow and we are starting to see that finally.
Now onto other news... We got some findings back from Lexie's autopsy. The main cause of her death was the size of her lungs. At 28 weeks, a baby's lungs should weigh 25 grams. Lexie's only weighed 9 grams, so about a third of the size they should have been. Additionally, they found that Lexie had a virus called CMV, Cytomegalovirus. This was important because we had Twin to Twin Transfusion Syndrome which means that Brooke probably has the virus too... and she does.
The virus isn't something they would have tested for in Brooke because she wasn't showing some of the main signs. Her head ultrasounds at 3 and 7 days had been clear. However, she does have a low white blood cell count and an enlarged spleen, both signs of her trying to fight off the virus. I talked with both our neonatologist, Dr. Derrick, and the infectious disease doctor, Dr. Schrantz, yesterday. They have decided that the best course of action is to start treatment for the virus through her IV. This medication will last for the next six weeks.
The main risks with this virus are to Brooke's hearing, vision, and cognitive development. Dr. Schrantz said that studies have been very positive using this medication in premature babies. We are once again hopeful.
Now to end on a positive note... I got to hold Brooke... twice. It was amazing. She is finally off of the Bilirubin light and doesn't have to wear the eye mask anymore. So we can see her face a little more and can now hold her every few days :)
Good news first... Brooke has gained some weight. She is now 950 grams, which is almost 2 lbs 2 oz. They are increasing her food everyday and later today plan on giving her 6mL for the first time. She isn't always processing all of her food, but is processing most of it and keeps on pooping... definitely a good sign.
As for her lungs and breathing, she is pretty much the same. They are really hoping to get her off of the ventilator soon and keep making adjustments to the pressure, rate, and oxygen level to try to get her there. Unfortunately, her lungs are still a bit too small, but Dr. Derrick said we need to see her grow and we are starting to see that finally.
Now onto other news... We got some findings back from Lexie's autopsy. The main cause of her death was the size of her lungs. At 28 weeks, a baby's lungs should weigh 25 grams. Lexie's only weighed 9 grams, so about a third of the size they should have been. Additionally, they found that Lexie had a virus called CMV, Cytomegalovirus. This was important because we had Twin to Twin Transfusion Syndrome which means that Brooke probably has the virus too... and she does.
The virus isn't something they would have tested for in Brooke because she wasn't showing some of the main signs. Her head ultrasounds at 3 and 7 days had been clear. However, she does have a low white blood cell count and an enlarged spleen, both signs of her trying to fight off the virus. I talked with both our neonatologist, Dr. Derrick, and the infectious disease doctor, Dr. Schrantz, yesterday. They have decided that the best course of action is to start treatment for the virus through her IV. This medication will last for the next six weeks.
The main risks with this virus are to Brooke's hearing, vision, and cognitive development. Dr. Schrantz said that studies have been very positive using this medication in premature babies. We are once again hopeful.
Now to end on a positive note... I got to hold Brooke... twice. It was amazing. She is finally off of the Bilirubin light and doesn't have to wear the eye mask anymore. So we can see her face a little more and can now hold her every few days :)
Sunday, February 7, 2010
Holding Strong
It's been a tough week on the Anderson family, but we are pleased to say that Brooke is holding strong. She is definitely up for a fight and has had a busy week, but we are extremely pleased with the care that she is receiving in the ISCU.
As we have mentioned, one of the biggest concerns with Brooke is her small lungs. She is still on the ventilator, but her levels of oxygen have gotten better through the week. She is still having some trouble getting all of the carbon monoxide out, but they are constantly monitoring it and adjusting the ventilator as necessary. They have done a lot of blood tests on her throughout the week and so she needed a blood transfusion yesterday. But, she has reacted to it well so far.
On Thursday, Brooke finally started eating (1 mL at a time). She has had a bit of difficulty processing the food so far, but did poop once - we were very excited!! Brooke was 850 grams (1 lb 14 oz) when she was born and has lost a bit of weight. She is now 780 grams (1 lb 12 oz). It is normal to lose a little weight during the first week, but we are anxious to see her get a little bigger.
As for the rest of us, we are at home together again. I came home on Thursday and being home with Owen & Jason has definitely helped us all. On Saturday, we had a nice, small family ceremony for Lexie. Jason & I truly feel loved and supported by our family and friends and thank you all for your continued prayers for Brooke.
As we have mentioned, one of the biggest concerns with Brooke is her small lungs. She is still on the ventilator, but her levels of oxygen have gotten better through the week. She is still having some trouble getting all of the carbon monoxide out, but they are constantly monitoring it and adjusting the ventilator as necessary. They have done a lot of blood tests on her throughout the week and so she needed a blood transfusion yesterday. But, she has reacted to it well so far.
On Thursday, Brooke finally started eating (1 mL at a time). She has had a bit of difficulty processing the food so far, but did poop once - we were very excited!! Brooke was 850 grams (1 lb 14 oz) when she was born and has lost a bit of weight. She is now 780 grams (1 lb 12 oz). It is normal to lose a little weight during the first week, but we are anxious to see her get a little bigger.
As for the rest of us, we are at home together again. I came home on Thursday and being home with Owen & Jason has definitely helped us all. On Saturday, we had a nice, small family ceremony for Lexie. Jason & I truly feel loved and supported by our family and friends and thank you all for your continued prayers for Brooke.
Wednesday, February 3, 2010
Thank you...
Thank you to everyone for their love and support. Brooke is still stable and fighting hard. She was actually taken off of the oscillator today and put on a normal ventilator which is a step in the right direction.
A few people have asked how they can help. In lieu of flowers, please send a small donation to the ISCU (Infant Special Care Unit) general fund. The money will go towards all of the babies in need of special care here, including Brooke.
Send donations to:
Northshore University HealthSystem Foundation
1033 University Place
Suite 450
Evanston, IL 60201
224.364.7200
Please make sure to let them know that the donation is for the ISCU general fund in memory of Lexie Anderson.
Please also ask them to notify Jason & Cindy Anderson that a contribution was made.
Thank you again for all of your support. Our little Brooke has a long fight ahead of her and we are going to need all of the thoughts & prayers for her.
A few people have asked how they can help. In lieu of flowers, please send a small donation to the ISCU (Infant Special Care Unit) general fund. The money will go towards all of the babies in need of special care here, including Brooke.
Send donations to:
Northshore University HealthSystem Foundation
1033 University Place
Suite 450
Evanston, IL 60201
224.364.7200
Please make sure to let them know that the donation is for the ISCU general fund in memory of Lexie Anderson.
Please also ask them to notify Jason & Cindy Anderson that a contribution was made.
Thank you again for all of your support. Our little Brooke has a long fight ahead of her and we are going to need all of the thoughts & prayers for her.
Tuesday, February 2, 2010
Lexie
Early this afternoon our baby girl, Lexie Lee Anderson, passed away. Jason and I got to spend time with her and hold her at the end which we treasured. Despite her best efforts, her little lungs just weren't strong enough to get oxygen to her body. As with our entire experience, the doctors and nurses were incredibly compassionate and wonderful.
We are extremely saddened in the loss, but I let Lexie know that she was in excellent hands as she is now being held by my mom in heaven. We are comforted by the fact that both my mom and dear friend Kindra are watching over her now. We also feel very fortunate that we were able to have her baptized last night with the family and that she is now with God watching over her sister Brooke.
We do not yet know all of the details for the service, but will be having a small gathering for immediate family only. Please continue to send all of your love and support to our little girl Brooke who still has a long and hard fight as she has many of the same issues as her sister.
We are extremely saddened in the loss, but I let Lexie know that she was in excellent hands as she is now being held by my mom in heaven. We are comforted by the fact that both my mom and dear friend Kindra are watching over her now. We also feel very fortunate that we were able to have her baptized last night with the family and that she is now with God watching over her sister Brooke.
We do not yet know all of the details for the service, but will be having a small gathering for immediate family only. Please continue to send all of your love and support to our little girl Brooke who still has a long and hard fight as she has many of the same issues as her sister.
We made it through a rough night...
So Brooke & Lexie have officially made it through a full day! Unfortunately, it has been a rough day for them. Both girls are around two pounds and 13 inches long. They also both have really small lungs for their size and age. Unfortunately, this is causing some problems.
Last night, we got a call at about 1:15am from the doctor saying that Lexie was really struggling. She had been having trouble getting the carbon dioxide out of her lungs, but it then turned into an additional problem of getting oxygen in her lungs. They eventually found an air pocket next to her right lung that was stopping her lung from expanding. They had to put a tube in her side to drain the fluid and excess air and this really seemed to help her. We were extremely scared that she wasn't going to make it through the night. Aunt Becky, Aunt Jenny, Papa Terry & Annie came out and we had Lexie baptized. It was beautiful.
Brooke seems to be in a more stable condition. They are still worried about her lungs and are watching her very closely, but they have been able to keep her oxygen intake more steady. This morning, I wished both girls a happy birthday (1 day old) and they were both still fighting. Dr. Derrick is still watching them very closely and making adjustments as necessary to make sure they are getting as much oxygen as possible.
We definitely need your love and prayers for our baby girls. The doctors have said that this is going to be hour by hour, day by day for a while. But they are fighters and we are all trying to stay strong.
Last night, we got a call at about 1:15am from the doctor saying that Lexie was really struggling. She had been having trouble getting the carbon dioxide out of her lungs, but it then turned into an additional problem of getting oxygen in her lungs. They eventually found an air pocket next to her right lung that was stopping her lung from expanding. They had to put a tube in her side to drain the fluid and excess air and this really seemed to help her. We were extremely scared that she wasn't going to make it through the night. Aunt Becky, Aunt Jenny, Papa Terry & Annie came out and we had Lexie baptized. It was beautiful.
Brooke seems to be in a more stable condition. They are still worried about her lungs and are watching her very closely, but they have been able to keep her oxygen intake more steady. This morning, I wished both girls a happy birthday (1 day old) and they were both still fighting. Dr. Derrick is still watching them very closely and making adjustments as necessary to make sure they are getting as much oxygen as possible.
We definitely need your love and prayers for our baby girls. The doctors have said that this is going to be hour by hour, day by day for a while. But they are fighters and we are all trying to stay strong.
Monday, February 1, 2010
Lexie and Brooke have arrived!
Early this morning Cindy began having contractions. We have seen this in the past but the contractions progressed quickly in terms of frequency and pain. We had hoped to have a meeting with our doctors this morning but our girls had other plans! We were quickly moved to the operating room where an emergency c-section was performed. As usual Cindy was checking on everyone, (the babies, her dad, sister, Lindsay, Mandy, and me.) The c-section was quick and our girls were delivered at 8:40. Cindy is in some pain, but is doing well.
Brooke and Lexie are fighting! They both have dark hair and Cindy and I were both able see and touch them briefly. We have had a chance to talk with the doctor and both girls are on the small side for 28 weeks and both are probably more on the severe side in terms of overall condition because of their small size. The biggest concern at this point is the size of their lungs. They are on special ventilators that pump over 100 "breaths" a minute to help get them more oxygen. At this point we really don't know much more other than they are working hard and have a difficult road in front of them. Cindy and I are staying positive and appreciate all the support.
Brooke and Lexie are fighting! They both have dark hair and Cindy and I were both able see and touch them briefly. We have had a chance to talk with the doctor and both girls are on the small side for 28 weeks and both are probably more on the severe side in terms of overall condition because of their small size. The biggest concern at this point is the size of their lungs. They are on special ventilators that pump over 100 "breaths" a minute to help get them more oxygen. At this point we really don't know much more other than they are working hard and have a difficult road in front of them. Cindy and I are staying positive and appreciate all the support.
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