So, it occurred to me that Josiah will be weighed in the morning. This is routine during his cardiology visits. I tossed him on the scale today....10lbs 11.5oz. Are you serious? I feel like the last two weeks has been a series of experiments gone wrong lol. I had stopped supplementing; that came back to bite me in the butt. I'd gotten lazy about pumping; I need to make an extra effort now. I've been letting Josiah sleep at night (generally 9pm until 7am); I will resume the midnight wake-up/feedings. Given that he weighed 10lbs 6.5oz 2 wks ago, he should "ideally" weigh 11lbs 4.5oz tomorrow morning. UGH!!! This continues to be a huge frustration for me. I cannot wait until we're at the point where we can relax for a minute without the fear of the "weight thing." So, I'll give him a few extra bottles tonight, in the a.m., and hope for the best. I'll fix the aforementioned things, in the meanwhile.
Tomorrow's cardiology appointment should be a breeze. Josiah is doing great post-surgery! We anticipate no problems or surprises. We just need to fix the weight issue before we see the pediatrician again :>
I think it's time to touch base with KF again. Soon.....this is driving me CRAZY :)
Showing posts with label surgery. Show all posts
Showing posts with label surgery. Show all posts
Thursday, April 5, 2012
Tuesday, January 24, 2012
The Day Before Surgery
We took Josiah for pre-op testing today. He had an EKG and labs, which all came back normal (a big relief). His weight had dropped from 9.3 lbs to 8.7 lbs since Friday....that was frustrating to hear. Given that he's been on Lasix since Friday, the medical staff was not surprised by the weight loss.
We spoke with a member of the anesthesiology and surgery departments. Releases were signed. We were given a tour of ICU, Josiah's first stop after surgery. We can bring a computer, as long as we don't plug it in (Wow! I guess I'll be leaving the computer at home LOL). We can have a drink in Josiah's room, as long as it has a cover on it. We can eat, as long as it's in the family room. We can have our cell phone, as long as we're in the hallway outside of the unit. Ok, looks like this stay won't be quite as comfortable as I had hoped. The priority is Josiah so it matters not. Sometimes, a little extra comfort just helps. Oh well.
We were home by 2pm, which was nice. We all took a nap. I checked in with my folks; the boys are doing well. We've cleaned up the house a bit. I'm not planning on getting a lot of sleep tonight. It's 10:43pm now. We still have to pack for Josiah (and us). Josiah needs a bath. And, finally, I need to feed him at 2am to allow him to eat before his 3am cut-off time. We're leaving the house at 5am to assure the 7am check-in time. Traffic can be horrible, even that early.
It's hard to imaging handing my 3 month old baby, and all the control, to a surgeon in a few hours. It's hard knowing that they will stop his little heart from beating, in order to fix it. It's hard knowing that he will have tubes, and breathing machines, and goodness knows what! I just keep reminding myself that it's become a fairly common procedure, and success rates are very high (98-99%). It's hard knowing that he will be in pain. On the other hand, I am grateful that he is too young to know, too young to be afraid, and too young to remember.
God, please take care of my son!
Josiah, be strong my littlest angel <3
We spoke with a member of the anesthesiology and surgery departments. Releases were signed. We were given a tour of ICU, Josiah's first stop after surgery. We can bring a computer, as long as we don't plug it in (Wow! I guess I'll be leaving the computer at home LOL). We can have a drink in Josiah's room, as long as it has a cover on it. We can eat, as long as it's in the family room. We can have our cell phone, as long as we're in the hallway outside of the unit. Ok, looks like this stay won't be quite as comfortable as I had hoped. The priority is Josiah so it matters not. Sometimes, a little extra comfort just helps. Oh well.
We were home by 2pm, which was nice. We all took a nap. I checked in with my folks; the boys are doing well. We've cleaned up the house a bit. I'm not planning on getting a lot of sleep tonight. It's 10:43pm now. We still have to pack for Josiah (and us). Josiah needs a bath. And, finally, I need to feed him at 2am to allow him to eat before his 3am cut-off time. We're leaving the house at 5am to assure the 7am check-in time. Traffic can be horrible, even that early.
It's hard to imaging handing my 3 month old baby, and all the control, to a surgeon in a few hours. It's hard knowing that they will stop his little heart from beating, in order to fix it. It's hard knowing that he will have tubes, and breathing machines, and goodness knows what! I just keep reminding myself that it's become a fairly common procedure, and success rates are very high (98-99%). It's hard knowing that he will be in pain. On the other hand, I am grateful that he is too young to know, too young to be afraid, and too young to remember.
God, please take care of my son!
Josiah, be strong my littlest angel <3
Friday, January 13, 2012
Cardiology update, Open-heart surgery, and Synagis shots
Josiah's cardiologist called this a.m. He's reviewed, and re-reviewed, the results from last weeks echo cardiogram. He's consulted with his Senior staff members, and they have reached a consensus.
Josiah has multiple ASD's. Due to the enlargement on the right side of his heart, it is believed that there is more blood flowing between chambers than originally thought. Unfortunately, this can lead to pulmonary hypertension. For a person without Trisomy 21 (Down Syndrome) the damage could take a decade or more. For someone with DS, the damage can occur within one year. Josiah is three months old now. They want to prevent his lungs from becoming damaged. As our pediatrician told us, pulmonary hypertension is often irreversible. Therefore, they have made the smartest decision to protect our little one.
Josiah will have open-heart surgery.
Next week, we will be bringing Josiah to Children's for a sedated echo cardiogram. He will also have an xray of his chest done (perhaps this is to confirm the earlier suspicion of RSV, perhaps it's just to gain an image of his lungs).
The cardiologist put in a surgical request today. We have been told that we will be hearing from the surgical clinic within 7-10 days. Surgery will likely occur in 4-8 weeks.
Had that original VSD not been found, we would probably be more flooded with emotion now. Mind you, we didn't know about the ASD's. We had prepared, early on, that Josiah would need surgery within the first 6 months of life. Believing the VSD had closed was a huge relief, but did not erase that initial preparation for what was to come. I'm glad about that.
You never want to be told that your baby needs open-heart surgery but the statistics are comforting. This is considered an 'easy' operation with a high success and rapid recovery rate. Josiah will likely be home within a few days of having surgery.
I cannot speak highly enough about the support system we have, and have built. Our pediatricians office called today stating they will putting in a request for Josiah to receive the Synagis shots for RSV. We didn't have to ask....they simply took it upon themselves to initiate. The following is information I copied from the website http://pediatrics.about.com/od/rsv/a/1006_synagis.htm about Synagis.
Although the flu and flu shots get most of the attention in the fall and winter, parents of high risk children shouldn't forget to consider Synagis shots to prevent RSV infections through the winter RSV season.
While RSV, or the respiratory syncytial virus, may just cause a cold in older children, it can cause a serious and life threatening infection in younger high risk children. These children, including premature babies, can develop bronchiolitis, which is associated with inflammation in the lungs, wheezing and difficulty breathing. RSV can also cause croup, ear infections, and pneumonia.
Children who are considered high risk for RSV infections and who should get monthly Synagis shots during RSV season, which typically lasts from November through April, include:
1) Infants and children under age 2 years who have required treatment for chronic lung disease, such as oxygen, bronchodilators, diuretics, or steroids, within 6 months of the start of RSV season.
2) Infants born at or before 28 weeks gestation and who are less than 12 months old at the start of RSV season, which means that these preemies will need Synagis for at least one RSV season.
3) Infants born at 29 to before 32 weeks, 0 days gestation and who are less than 6 months old at the start of RSV season.
4) Infants born at 32 weeks, 0 day to 35 weeks gestation and who are less than 3 months old at the start of RSV season or who are born during RSV season and who have at least one of the following risk factors:
6) Certain infants born before 35 weeks with congenital abnormalities of the airway or neuromuscular disease.
The NICU might also set up your child's Synagis shots before you leave the nursery if your child was born prematurely.
Keep in mind that it can take some time to get the Synagis shots approved by your insurance company, so start early if your child is in a high risk group and needs Synagis this RSV season.
I read two quotes today (on a social media networking site). It's funny how sometimes things seem like they were intended for you to see, at just the right time :)
Josiah has multiple ASD's. Due to the enlargement on the right side of his heart, it is believed that there is more blood flowing between chambers than originally thought. Unfortunately, this can lead to pulmonary hypertension. For a person without Trisomy 21 (Down Syndrome) the damage could take a decade or more. For someone with DS, the damage can occur within one year. Josiah is three months old now. They want to prevent his lungs from becoming damaged. As our pediatrician told us, pulmonary hypertension is often irreversible. Therefore, they have made the smartest decision to protect our little one.
Josiah will have open-heart surgery.
Next week, we will be bringing Josiah to Children's for a sedated echo cardiogram. He will also have an xray of his chest done (perhaps this is to confirm the earlier suspicion of RSV, perhaps it's just to gain an image of his lungs).
The cardiologist put in a surgical request today. We have been told that we will be hearing from the surgical clinic within 7-10 days. Surgery will likely occur in 4-8 weeks.
Had that original VSD not been found, we would probably be more flooded with emotion now. Mind you, we didn't know about the ASD's. We had prepared, early on, that Josiah would need surgery within the first 6 months of life. Believing the VSD had closed was a huge relief, but did not erase that initial preparation for what was to come. I'm glad about that.
You never want to be told that your baby needs open-heart surgery but the statistics are comforting. This is considered an 'easy' operation with a high success and rapid recovery rate. Josiah will likely be home within a few days of having surgery.
I cannot speak highly enough about the support system we have, and have built. Our pediatricians office called today stating they will putting in a request for Josiah to receive the Synagis shots for RSV. We didn't have to ask....they simply took it upon themselves to initiate. The following is information I copied from the website http://pediatrics.about.com/od/rsv/a/1006_synagis.htm about Synagis.
Although the flu and flu shots get most of the attention in the fall and winter, parents of high risk children shouldn't forget to consider Synagis shots to prevent RSV infections through the winter RSV season.
While RSV, or the respiratory syncytial virus, may just cause a cold in older children, it can cause a serious and life threatening infection in younger high risk children. These children, including premature babies, can develop bronchiolitis, which is associated with inflammation in the lungs, wheezing and difficulty breathing. RSV can also cause croup, ear infections, and pneumonia.
Children who are considered high risk for RSV infections and who should get monthly Synagis shots during RSV season, which typically lasts from November through April, include:
1) Infants and children under age 2 years who have required treatment for chronic lung disease, such as oxygen, bronchodilators, diuretics, or steroids, within 6 months of the start of RSV season.
2) Infants born at or before 28 weeks gestation and who are less than 12 months old at the start of RSV season, which means that these preemies will need Synagis for at least one RSV season.
3) Infants born at 29 to before 32 weeks, 0 days gestation and who are less than 6 months old at the start of RSV season.
4) Infants born at 32 weeks, 0 day to 35 weeks gestation and who are less than 3 months old at the start of RSV season or who are born during RSV season and who have at least one of the following risk factors:
- child care attendance (daycare)
- has a siblings less than five years old
6) Certain infants born before 35 weeks with congenital abnormalities of the airway or neuromuscular disease.
Where to Get Synagis
Because Synagis is so expensive, it is unlikely that you will be able to get your child's Synagis shots from your pediatrician. Instead, your pediatrician will probably refer you to a 'Synagis clinic' or a home health agency for the Synagis shots.The NICU might also set up your child's Synagis shots before you leave the nursery if your child was born prematurely.
Keep in mind that it can take some time to get the Synagis shots approved by your insurance company, so start early if your child is in a high risk group and needs Synagis this RSV season.
What You Need To Know
- Once you start Synagis during an RSV season, you typically complete the season, even if your child outgrows his risk factor. For example, if your 31 week preemie started his Synagis shots when he was 5 months old in November, you wouldn't stop them in December just because he was now 6 months old. If your child's risk factor was attending daycare and your child is now staying home, you might talk to your pediatrician about whether or not you needed to continue your infant's Synagis shots though.
- During a typical RSV season, kids get their last RSV shot in March, which provides protection into April. The timing of the last shot may vary though, depending on whether or not experts are still seeing a lot of children with RSV into early or late April.
- Some experts consider multiple births, crowded living conditions, family history of asthma, and low birth weight, to be additional risk factors to use when considering which 32 to 35 week preemies should get Synagis.
I read two quotes today (on a social media networking site). It's funny how sometimes things seem like they were intended for you to see, at just the right time :)
- "When life puts you in tough situations, Don't say, "Why me?" Just say, "Try me!"
- "Don't believe in miracles - depend on them" ~ Laurence J. Peter
Wednesday, January 4, 2012
Looking back at 2011
2011 was a year of great change, enormous obstacles, tragedy, and laughter.
In February, we discovered I was pregnant. During the next few months, we learned that we were carrying a baby boy and that he would have Down Syndrome. We learned of a hole in the baby's heart that would later heal on its own. In October, we gave birth to Josiah. We quickly became involved with several Down Syndrome Societies, Early Intervention, the Down Syndrome Clinic at our local Children's Hospital, and a new group of friends.
Carl, after having had a horrific history of back pain and ulcers, had his first cortisone shot in February. His back pain kept him from participating in most activities for the better part of the year. In Sept, we learned that the cortisone shot had begun a chain reaction....it reactivated an ulcer that had been surgically repaired years ago. The result.....he almost died, had emergency surgery, spent 3 weeks in the hospital, and returned just in time to witness the birth of Josiah.
Our son Jesse turned four. He started preschool in February, enjoyed summer activities with family, and returned to preschool in Sept.
Our son James turned two. He enjoyed summer activities with family, and began potty-training.
Both older boys said good-bye to an uncle and embraced a baby brother.
In Sept, my brother Scott died unexpectedly of a drug overdose. He was 50 yrs old. My brother Jeff and I both spoke at his funeral and we adjusted to not having an older brother any longer. We watched our parents bury their oldest child. We celebrated the good memories and mourned what could have been. We celebrated our first Thanksgiving and Christmas without Scott.
Some would say, it's been a bad year for our family. I don't see it that way.
* We were given the gift of Josiah and we couldn't be prouder to be his chosen parents.
* We've watched our older boys grow, learn, blossom, and embrace life. We couldn't be any prouder of them.
* Our family continuously demonstrates their undying love and support. We are extremely lucky. I thank God, everyday, for blessing us with our family.
* Carl was given a new lease on life. He was blessed with doctors that intervened, at just the right time. He was returned to us. For that, we are so blessed.
* My brother Scott finally found his way Home. His torment ended. He found peace.
* We have 3 beautiful boys who remind us, everyday, that life is a journey that must be embraced with love and adoration.
The focus can never be on the 'bad' moments but rather the knowledge gained from enduring them with grace, dignity, and an open heart.
Happy New Year!
In February, we discovered I was pregnant. During the next few months, we learned that we were carrying a baby boy and that he would have Down Syndrome. We learned of a hole in the baby's heart that would later heal on its own. In October, we gave birth to Josiah. We quickly became involved with several Down Syndrome Societies, Early Intervention, the Down Syndrome Clinic at our local Children's Hospital, and a new group of friends.
Carl, after having had a horrific history of back pain and ulcers, had his first cortisone shot in February. His back pain kept him from participating in most activities for the better part of the year. In Sept, we learned that the cortisone shot had begun a chain reaction....it reactivated an ulcer that had been surgically repaired years ago. The result.....he almost died, had emergency surgery, spent 3 weeks in the hospital, and returned just in time to witness the birth of Josiah.
Our son Jesse turned four. He started preschool in February, enjoyed summer activities with family, and returned to preschool in Sept.
Our son James turned two. He enjoyed summer activities with family, and began potty-training.
Both older boys said good-bye to an uncle and embraced a baby brother.
In Sept, my brother Scott died unexpectedly of a drug overdose. He was 50 yrs old. My brother Jeff and I both spoke at his funeral and we adjusted to not having an older brother any longer. We watched our parents bury their oldest child. We celebrated the good memories and mourned what could have been. We celebrated our first Thanksgiving and Christmas without Scott.
Some would say, it's been a bad year for our family. I don't see it that way.
* We were given the gift of Josiah and we couldn't be prouder to be his chosen parents.
* We've watched our older boys grow, learn, blossom, and embrace life. We couldn't be any prouder of them.
* Our family continuously demonstrates their undying love and support. We are extremely lucky. I thank God, everyday, for blessing us with our family.
* Carl was given a new lease on life. He was blessed with doctors that intervened, at just the right time. He was returned to us. For that, we are so blessed.
* My brother Scott finally found his way Home. His torment ended. He found peace.
* We have 3 beautiful boys who remind us, everyday, that life is a journey that must be embraced with love and adoration.
The focus can never be on the 'bad' moments but rather the knowledge gained from enduring them with grace, dignity, and an open heart.
Happy New Year!
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