JFK
Thursday, November 30, 2006
Thursday, November 16, 2006
Ben & Jake, 9 weeks old
The boys are doing great. They are enjoying the luxuries of home!!! I still have to pinch myself…I can’t believe they are actually here. They are growing like weeds since they have been home. We have taken them to the pediatrician twice and boy was that an adventure. We were actually a half an hour late to the appointment because we did not allow for enough time to get two newborns and all of their belongings into the car and to the clinic. The doctor’s office was very understanding about our late arrival. Next time we will give ourselves a good hour prior to departure!! :)
The pediatrician said the boys look great. Ben’s lungs sounded clear, his color was good, and his blood work came back just fine too. We will be going to the pediatrician once a week for a few more weeks just to make sure he is still on the right track. We still are a little nervous about his health after all we have been through. I pretty much analyze every move he makes. I know in time we will be more and more confident about his health. He sure looks perfect to us!!
Our first night was very entertaining. We didn’t sleep at all. It was a combination of new parent jitters, excitement, diaper changing, feeding, burping, rocking, etc., etc. Each night we get just a few more minutes of sleep however each feeding takes about an hour and they eat every three hours…so you do the math! :)
I also wanted to update everyone on the pathology report. I just got the results last week and it was very interesting. The findings showed:
1) Jake had about 70% of the placenta and Ben had about 30%
2) Ben’s cord was restricted at the placental insertion
3) There were connections as expected in a Di Mo pregnancy that caused mild TTTS
4) There may have been an infection in the uterus
5) There was traces of meconium found in the membrane
6) Advanced placental maturation for stated gestational age of 31 weeks
As you can see, these boys are a true miracle!!! It’s hard to believe they made it out so safely. The doctor said he is not sure if one of these six problems were more dominant then the other..but he thinks #2 was the number one reason Ben’s growth was restricted. He said we will never really know for sure why things played out the way they did…but the important thing is we had a happy ending.
Well, I must go feed the boys! Hope you are having a good day!
By the way…November 19th was my actual due date. Interesting…huh??
Danielle
The boys are doing great. They are enjoying the luxuries of home!!! I still have to pinch myself…I can’t believe they are actually here. They are growing like weeds since they have been home. We have taken them to the pediatrician twice and boy was that an adventure. We were actually a half an hour late to the appointment because we did not allow for enough time to get two newborns and all of their belongings into the car and to the clinic. The doctor’s office was very understanding about our late arrival. Next time we will give ourselves a good hour prior to departure!! :)
The pediatrician said the boys look great. Ben’s lungs sounded clear, his color was good, and his blood work came back just fine too. We will be going to the pediatrician once a week for a few more weeks just to make sure he is still on the right track. We still are a little nervous about his health after all we have been through. I pretty much analyze every move he makes. I know in time we will be more and more confident about his health. He sure looks perfect to us!!
Our first night was very entertaining. We didn’t sleep at all. It was a combination of new parent jitters, excitement, diaper changing, feeding, burping, rocking, etc., etc. Each night we get just a few more minutes of sleep however each feeding takes about an hour and they eat every three hours…so you do the math! :)
I also wanted to update everyone on the pathology report. I just got the results last week and it was very interesting. The findings showed:
1) Jake had about 70% of the placenta and Ben had about 30%
2) Ben’s cord was restricted at the placental insertion
3) There were connections as expected in a Di Mo pregnancy that caused mild TTTS
4) There may have been an infection in the uterus
5) There was traces of meconium found in the membrane
6) Advanced placental maturation for stated gestational age of 31 weeks
As you can see, these boys are a true miracle!!! It’s hard to believe they made it out so safely. The doctor said he is not sure if one of these six problems were more dominant then the other..but he thinks #2 was the number one reason Ben’s growth was restricted. He said we will never really know for sure why things played out the way they did…but the important thing is we had a happy ending.
Well, I must go feed the boys! Hope you are having a good day!
By the way…November 19th was my actual due date. Interesting…huh??
Danielle
Sunday, November 12, 2006
Jake & Ben, HOME AT LAST!!!!!!!!!!!!!!!!!!!!!!!!!!!
Today is such a wonderful day. A day we have dreamed about for so long!!!! Our family is together, under one roof!!! We couldn't be happier! The best part is that my family is celebrating Thanksgiving today because my parents are leaving for Florida this week. It was so wonderful having the entire family together for this joyous occasion. We have sooooo much to be thankful for.
Wow, I get tears in my eyes when I think about all of the support we have recieved on this blog. Whether we knew you or you were a perfect stranger...your comments, prayers, and support have given us the strength to keep fighting. We created this to keep family & friends updated because it was so hard to rehash the event each time we talked to someone..but we had no idea how much WE would get from doing the blog. We hope to post again...might not be as interesting...unless you find dirty diapers and sleepless nights interesting! :)
Thank you from the bottom of our hearts! We are now moving on to part three of this journey...Life with twin boys!!!
Fondly,
Danielle and Kevin
Enjoy the pictures
Today is such a wonderful day. A day we have dreamed about for so long!!!! Our family is together, under one roof!!! We couldn't be happier! The best part is that my family is celebrating Thanksgiving today because my parents are leaving for Florida this week. It was so wonderful having the entire family together for this joyous occasion. We have sooooo much to be thankful for.
Wow, I get tears in my eyes when I think about all of the support we have recieved on this blog. Whether we knew you or you were a perfect stranger...your comments, prayers, and support have given us the strength to keep fighting. We created this to keep family & friends updated because it was so hard to rehash the event each time we talked to someone..but we had no idea how much WE would get from doing the blog. We hope to post again...might not be as interesting...unless you find dirty diapers and sleepless nights interesting! :)
Thank you from the bottom of our hearts! We are now moving on to part three of this journey...Life with twin boys!!!
Fondly,
Danielle and Kevin
Enjoy the pictures
Ben & Jake, 8 weeks and 3 days old
GREAT NEWS!!!!!!!!!!! We are picking Ben up today. I have been hesitant about posting just because I wanted to make sure it was really going to happen. We called at 6 a.m. this morning and they confirmed Ben's discharge. We are so happy!!!
We will write later! :) Danielle
GREAT NEWS!!!!!!!!!!! We are picking Ben up today. I have been hesitant about posting just because I wanted to make sure it was really going to happen. We called at 6 a.m. this morning and they confirmed Ben's discharge. We are so happy!!!
We will write later! :) Danielle
Friday, November 10, 2006
Jake & Ben, 8 weeks old
The roller coaster ride continues! We were told Ben was coming home Saturday but his homecoming has been delayed once again. He continues to intermittently breath fast, which they believe is still related to the fluid in the lungs. The diuretics are helping with the breathing episodes but have caused him to loose weight. He went from 4 pounds 12 ounces to 4 pounds 6 ounces. The doctors want to get him on an effective dosage of diuretics and have him gaining weight at the same time. Not sure how long this will take…
We are beside ourselves. I don’t even know what to write… The doctors keep telling us he will be fine we just have to be patient. We are trying so hard to be patient but we worry 24 hours a day. We know things could be a lot worse but seeing Ben in the hospital by himself is so heartbreaking.
Jake is doing really well…other then suffering from separation anxiety like the rest of us. Its obvious he enjoys all of the constant love he is getting. We are making up for lost time! :) Soon enough we can do the same for Ben.
Please keep Ben in your prayers!
XOXO
The roller coaster ride continues! We were told Ben was coming home Saturday but his homecoming has been delayed once again. He continues to intermittently breath fast, which they believe is still related to the fluid in the lungs. The diuretics are helping with the breathing episodes but have caused him to loose weight. He went from 4 pounds 12 ounces to 4 pounds 6 ounces. The doctors want to get him on an effective dosage of diuretics and have him gaining weight at the same time. Not sure how long this will take…
We are beside ourselves. I don’t even know what to write… The doctors keep telling us he will be fine we just have to be patient. We are trying so hard to be patient but we worry 24 hours a day. We know things could be a lot worse but seeing Ben in the hospital by himself is so heartbreaking.
Jake is doing really well…other then suffering from separation anxiety like the rest of us. Its obvious he enjoys all of the constant love he is getting. We are making up for lost time! :) Soon enough we can do the same for Ben.
Please keep Ben in your prayers!
XOXO
Wednesday, November 08, 2006
Interested in helping unborn babies???
Check out www.fetalhope.org.
There is a TTTS calendar on their that features TTTS survivors and angels.
All proceeds go directly to the fetal hope foundation for further research of TTTS.
Kevin and I know a few of the families featured in the calendar. What a wonderful cause!!
Check out www.fetalhope.org.
There is a TTTS calendar on their that features TTTS survivors and angels.
All proceeds go directly to the fetal hope foundation for further research of TTTS.
Kevin and I know a few of the families featured in the calendar. What a wonderful cause!!
Tuesday, November 07, 2006
Ben & Jake, 7 ½ weeks old
We finally have some answers as to why Ben is still having breathing issues…and hopefully, a solution. Sunday night they did a multi-channel test to see if Ben’s breathing issues were central (related to the brain) or obstructed. Acid reflux, a stuffy nose, and other miscellaneous reasons can cause obstructed Apnea. Ben’s breathing issues are obstructed, which we were told was the better of the two.
In Ben’s case, the obstruction is fluid in his lungs. The doctors are calling this diagnosis “Chronic Lung Disease.” This sounds very scary but we were happy to find out that Ben will be able to play sports and bounce around like any other two year old. He has a very mild case of CLD. Most preemies with CLD are still on the vent and oxygen, neither of which Ben is on. They said this is very common in babies born under two pounds two ounces.
Where to we go from here…Ben is now on a diuretic to rid the extra fluid from his body. We started this yesterday at 2:00 p.m. and can already see improvements. They are going to try to take his cannula out today and hopefully we will see great improvements in the next few days. We hope he will be home by the weekend or early next week. We won’t get our hopes up until he is actually in his car seat and on the way home.
The doctor said he may have to come home on the diuretic but predicts Ben will be off of any meds. by six months old. He also said he should have healthy, normal lungs by the time he is two if not before. This will change our plan of care for him. If he catches a common cold, it can put him back in the hospital. We have to be extra careful with him and exposing him to sick people. I thought I was paranoid before…now I really am paranoid.
When the doctor told me about the Chronic Lung Disease last night I was pretty upset. But when I think about what our prognosis was eight months ago, this seems like a walk in the park. I am glad to know this will not cause any long-term problems for Ben. It just breaks my heart to see my child in distress…whether it is gas pains or breathing issues. You feel so helpless as a parent. You just want to take away their pain, but don’t know how. Thank goodness we have wonderful doctors and nurses.
Our nurses have been so great. Two of our favorite nurses, Casey and Jill, actually gave us their home phone numbers. How nice is that!! I talked to Casey about ten times the night Jake came home. Jill has also been such an advocate for the boys. She treats them like her own. They cuddle with them when we are not there. They make the parents feel at ease. We are so lucky to be at U.M.
Hopefully we will have some good news soon!
Thanks, Danielle & Kevin
We finally have some answers as to why Ben is still having breathing issues…and hopefully, a solution. Sunday night they did a multi-channel test to see if Ben’s breathing issues were central (related to the brain) or obstructed. Acid reflux, a stuffy nose, and other miscellaneous reasons can cause obstructed Apnea. Ben’s breathing issues are obstructed, which we were told was the better of the two.
In Ben’s case, the obstruction is fluid in his lungs. The doctors are calling this diagnosis “Chronic Lung Disease.” This sounds very scary but we were happy to find out that Ben will be able to play sports and bounce around like any other two year old. He has a very mild case of CLD. Most preemies with CLD are still on the vent and oxygen, neither of which Ben is on. They said this is very common in babies born under two pounds two ounces.
Where to we go from here…Ben is now on a diuretic to rid the extra fluid from his body. We started this yesterday at 2:00 p.m. and can already see improvements. They are going to try to take his cannula out today and hopefully we will see great improvements in the next few days. We hope he will be home by the weekend or early next week. We won’t get our hopes up until he is actually in his car seat and on the way home.
The doctor said he may have to come home on the diuretic but predicts Ben will be off of any meds. by six months old. He also said he should have healthy, normal lungs by the time he is two if not before. This will change our plan of care for him. If he catches a common cold, it can put him back in the hospital. We have to be extra careful with him and exposing him to sick people. I thought I was paranoid before…now I really am paranoid.
When the doctor told me about the Chronic Lung Disease last night I was pretty upset. But when I think about what our prognosis was eight months ago, this seems like a walk in the park. I am glad to know this will not cause any long-term problems for Ben. It just breaks my heart to see my child in distress…whether it is gas pains or breathing issues. You feel so helpless as a parent. You just want to take away their pain, but don’t know how. Thank goodness we have wonderful doctors and nurses.
Our nurses have been so great. Two of our favorite nurses, Casey and Jill, actually gave us their home phone numbers. How nice is that!! I talked to Casey about ten times the night Jake came home. Jill has also been such an advocate for the boys. She treats them like her own. They cuddle with them when we are not there. They make the parents feel at ease. We are so lucky to be at U.M.
Hopefully we will have some good news soon!
Thanks, Danielle & Kevin
Tuesday, October 31, 2006
Jake & Ben, 47 days old
Update/Ben: We have had a few setbacks this week with Benny. Poor little guy can’t catch a break! As I mentioned, he was suppose to come home Saturday but they delayed his homecoming due to some bradycardia spells. He continues to have them and the doctors are perplexed as to why he is still having them. At this point, he really should be outgrowing them but he still is very small and breathing is directly related to muscle mass and fat. Yesterday, he had an echocardiogram to see if there is something wrong with his heart that is causing these breathing spells. Fortunately, the eco. results came back just fine. Nothing seems to be wrong with Ben. He is eating wonderfully, gaining weight, and maintaining his temperature. They are hoping he just needs a little more time. They want him to go at least 24 hours without a bradycardia spell before he goes home. They are going to do another test to see if sending him home on oxygen would help him with his spells. This breaks our heart that he would still have be hooked up to these machines, but hopefully it would only be for a short period of time.
I often wonder if Ben is having a hard time because of the separation. He was ready to go out the door until Jake left. Ever since Jake has been gone, Ben seems to be having these spells again. My doctor was telling me that studies have been done on co-bedding twins and how they often do a lot better when they are together. Hopefully, once Ben gets home and he is back with Jake, he will start thriving again.
Update/Jake: Oh Jake…my little gassy guy!! We spent Sunday night in the emergency room because we thought he was having breathing difficulties. His breathing seemed very labored. He was grunting, groaning, and holding his breathing on and off for 7 hours. It really made us quite nervous and my parents kept telling us he’s just constipated and that these are normal baby sounds…but we wanted to get things checked out for our own piece of mind. Well my parents were right…the diagnosis came back as a severe case of gas and constipation. Yea…we went to the emergency room at 3:00 a.m. for indigestion. I guess being first time parents, you have to learn the hard way. Thank goodness he is ok!
Update/Us: We are a little stressed out over Ben’s current issue. We were so close to being done with the NICU part of this journey. We see it as a minor setback but still worry that something else might be going on with Ben. My gut feeling tells me he is ok and just needs a little more growing time. When we first took the boys off of the cannula, Ben was in the three pound range and Jake was in the five pound range…Ben was still so little. I think it was too soon for him. Again, hopefully time will be the best medicine.
Life with Jake home is great. He is currently cuddled up on my chest as I type on my laptop. Other then his gas issues, he is such a content little guy. I don’t know if it is a preemie thing, but he doesn’t cry much at all. He seems very content.
As I mentioned before, we are living at my parent’s house till our house is ready. At first, we were stressed about not being in our house when the boys came home but I truly believe this is a part of God’s master plan. It has been so nice being at my parent’s house and having the extra help. After the emergency room debacle, my mom let us sleep for five hours straight while she watched Jake. It was so nice. It has also helped having our parents watch Jake while we go back and forth to see Ben.
I know we have already asked for so many prayers…but could you say one more for Ben? I know he is a fighter and will ultimately be just fine. We just have to be patient.
Thank you for your prayers!
Danielle & Kevin
PS) Jake is 6 pounds and Ben is 4 pound 5 ounces.
Update/Ben: We have had a few setbacks this week with Benny. Poor little guy can’t catch a break! As I mentioned, he was suppose to come home Saturday but they delayed his homecoming due to some bradycardia spells. He continues to have them and the doctors are perplexed as to why he is still having them. At this point, he really should be outgrowing them but he still is very small and breathing is directly related to muscle mass and fat. Yesterday, he had an echocardiogram to see if there is something wrong with his heart that is causing these breathing spells. Fortunately, the eco. results came back just fine. Nothing seems to be wrong with Ben. He is eating wonderfully, gaining weight, and maintaining his temperature. They are hoping he just needs a little more time. They want him to go at least 24 hours without a bradycardia spell before he goes home. They are going to do another test to see if sending him home on oxygen would help him with his spells. This breaks our heart that he would still have be hooked up to these machines, but hopefully it would only be for a short period of time.
I often wonder if Ben is having a hard time because of the separation. He was ready to go out the door until Jake left. Ever since Jake has been gone, Ben seems to be having these spells again. My doctor was telling me that studies have been done on co-bedding twins and how they often do a lot better when they are together. Hopefully, once Ben gets home and he is back with Jake, he will start thriving again.
Update/Jake: Oh Jake…my little gassy guy!! We spent Sunday night in the emergency room because we thought he was having breathing difficulties. His breathing seemed very labored. He was grunting, groaning, and holding his breathing on and off for 7 hours. It really made us quite nervous and my parents kept telling us he’s just constipated and that these are normal baby sounds…but we wanted to get things checked out for our own piece of mind. Well my parents were right…the diagnosis came back as a severe case of gas and constipation. Yea…we went to the emergency room at 3:00 a.m. for indigestion. I guess being first time parents, you have to learn the hard way. Thank goodness he is ok!
Update/Us: We are a little stressed out over Ben’s current issue. We were so close to being done with the NICU part of this journey. We see it as a minor setback but still worry that something else might be going on with Ben. My gut feeling tells me he is ok and just needs a little more growing time. When we first took the boys off of the cannula, Ben was in the three pound range and Jake was in the five pound range…Ben was still so little. I think it was too soon for him. Again, hopefully time will be the best medicine.
Life with Jake home is great. He is currently cuddled up on my chest as I type on my laptop. Other then his gas issues, he is such a content little guy. I don’t know if it is a preemie thing, but he doesn’t cry much at all. He seems very content.
As I mentioned before, we are living at my parent’s house till our house is ready. At first, we were stressed about not being in our house when the boys came home but I truly believe this is a part of God’s master plan. It has been so nice being at my parent’s house and having the extra help. After the emergency room debacle, my mom let us sleep for five hours straight while she watched Jake. It was so nice. It has also helped having our parents watch Jake while we go back and forth to see Ben.
I know we have already asked for so many prayers…but could you say one more for Ben? I know he is a fighter and will ultimately be just fine. We just have to be patient.
Thank you for your prayers!
Danielle & Kevin
PS) Jake is 6 pounds and Ben is 4 pound 5 ounces.
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