Henry is doing good today, he was still a little out of it. They gave him morphine this morning because he looked a little uncomfortable. When the Dr came for rounds she said no more morphine since it was making him sluggish with his breathing and they needed him to work harder, he would be given Tylenol if he needed anything. He was very agitated and did not like to be bothered. He would stop breathing on his own again and set off the alarms. So i pretty much left him alone. It was hysterical though every time the Dr walked by or said something or the nurse opened his incubator he would do the same thing!! It was amazing to see how observant the little guy is. The nurse said it happens a lot with babies, they get upset after a while because they associate those sounds with someone bothering them...needles, thermometers, suctions, diaper changes, xrays...the poor kid hasn't probably gotten a full hour sleep since he was born with all that has been done to him!! :(
They said they would leave him alone as much as possible today so he could rest because hopefully tomorrow is a big day. They are going to extubate him!!!!!!!!!!!!!!!!!!!!! The Dr is hoping to take him off the ventilator and on to CPAP tomorrow, this is HUGE!! I'm nervous though because that means he needs to breath on his own, which he isn't a fan of but the nurse assured me it's fine. He will be watched closely and his settings tonight will be dropped very low to get him used to the idea of doing the work himself.
So excited!!!!!!
Thursday, October 22, 2009
Wednesday, October 21, 2009
Chronic Lung Disease
People have been asking us what Henry has or how is he and I don't really know how to explain because he will be ok but it's going to take a long time and we have a lot to deal with before he's "ok". He has Chronic Lung Disease, not sure why the "chronic" part is there since he will eventually get better.
I have no idea how to explain it but this site literally explains what he has gone through, going through and what's to come. Hope this helps!! :-)
http://www.lpch.org/DiseaseHealthInfo/HealthLibrary/respire/cld.html
Chronic Lung Disease (Bronchopulmonary Dysplasia)
What is chronic lung disease?
Chronic lung disease (CLD) is a general term for long-term respiratory problems in premature babies. It is also known as bronchopulmonary dysplasia (BPD).
What causes chronic lung disease?
CLD results from lung injury to newborns who must use a mechanical ventilator and extra oxygen for breathing. The lungs of premature babies are fragile and are easily damaged. With injury, the tissues inside the lungs become inflamed and can break down causing scarring. This scarring can result in difficulty breathing and increased oxygen needs. Some of the causes of lung injury include the following:
prematurity - the lungs, especially the air sacs, are not fully developed
low amounts of surfactant (a substance in the lungs that helps keep the tiny air sacs open)
oxygen use (high concentrations of oxygen can damage the cells of the lungs)
mechanical ventilation - the pressure of air from breathing machines, suctioning of the airways, use of an endotracheal tube (ET tube - a tube placed in the trachea and connected to a breathing machine)
Who is affected by chronic lung disease?
Chronic lung disease can develop in premature babies who have had mechanical ventilation (breathing machine). Risk factors for developing CLD include:
birth at less than 34 weeks gestation
birthweight less than 2,000 grams (4 pounds 6 1/2 ounces)
hyaline membrane disease - lung disease of prematurity due to lack of surfactant that does not show the usual improvement by the third or fourth day.
pulmonary interstitial emphysema (PIE) - a problem in which air leaks out of the airways into the spaces between the small air sacs of the lungs.
patent ductus arteriosus (PDA) - a connection between the blood vessels of the heart and lungs that does not close as it should after birth.
Caucasian, male babies
maternal womb infection (chorioamnionitis)
a family history of asthma
What are the symptoms of chronic lung disease?
The following are the most common symptoms of CLD. However, each baby may experience different symptoms of the condition. Symptoms may include:
respiratory distress (rapid breathing, flaring of the nostrils, chest retractions)
continued need for mechanical ventilation or oxygen after a premature baby reaches 36 weeks gestation
Symptoms of CLD may resemble other conditions or medical problems. Always consult your baby's physician for a diagnosis.
How is chronic lung disease diagnosed?
Because CLD is a chronic disease and appears gradually, physicians must look at several factors. It is often diagnosed when a premature baby with respiratory problems continues to need additional oxygen after reaching 36 weeks gestational age. Chest x-rays compared with previous x-rays may show changes in the appearance of the lungs. The x-ray of lungs with CLD often have a bubbly, sponge-like appearance. X-rays are diagnostic tests which use invisible electromagnetic energy beams to produce images of internal tissues, bones, and organs onto film.
Treatment of chronic lung disease:
Specific treatment for CLD will be determined by your baby's physician based on:
your baby's gestational age, overall health, and medical history
extent of the disease
your baby's tolerance for specific medications, procedures, or therapies
expectations for the course of the disease
your opinion or preference
Treatment of CLD may include:
extra oxygen (to make up for the decreased breathing ability of the damaged lungs)
mechanical ventilation with gradual weaning as the baby's lungs grow and can do more of the work of breathing
medications such as:
bronchodilators (to help open the airways)
steroids (to help reduce inflammation)
limiting fluids and giving a diuretic medication to help reduce excess fluid which can worsen breathing ability
nutrition (to help the baby and the lungs grow)
immunization against lung infection by respiratory syncytial virus (RSV) and influenza
CLD can be a long-term condition. Some babies with CLD require mechanical ventilators for several months. Some babies will continue to require oxygen when they go home from the hospital, but most can be weaned from oxygen by the end of their first year. Babies with CLD may be at increased risk for respiratory infection and may have to be re-hospitalized.
I have no idea how to explain it but this site literally explains what he has gone through, going through and what's to come. Hope this helps!! :-)
http://www.lpch.org/DiseaseHealthInfo/HealthLibrary/respire/cld.html
Chronic Lung Disease (Bronchopulmonary Dysplasia)
What is chronic lung disease?
Chronic lung disease (CLD) is a general term for long-term respiratory problems in premature babies. It is also known as bronchopulmonary dysplasia (BPD).
What causes chronic lung disease?
CLD results from lung injury to newborns who must use a mechanical ventilator and extra oxygen for breathing. The lungs of premature babies are fragile and are easily damaged. With injury, the tissues inside the lungs become inflamed and can break down causing scarring. This scarring can result in difficulty breathing and increased oxygen needs. Some of the causes of lung injury include the following:
prematurity - the lungs, especially the air sacs, are not fully developed
low amounts of surfactant (a substance in the lungs that helps keep the tiny air sacs open)
oxygen use (high concentrations of oxygen can damage the cells of the lungs)
mechanical ventilation - the pressure of air from breathing machines, suctioning of the airways, use of an endotracheal tube (ET tube - a tube placed in the trachea and connected to a breathing machine)
Who is affected by chronic lung disease?
Chronic lung disease can develop in premature babies who have had mechanical ventilation (breathing machine). Risk factors for developing CLD include:
birth at less than 34 weeks gestation
birthweight less than 2,000 grams (4 pounds 6 1/2 ounces)
hyaline membrane disease - lung disease of prematurity due to lack of surfactant that does not show the usual improvement by the third or fourth day.
pulmonary interstitial emphysema (PIE) - a problem in which air leaks out of the airways into the spaces between the small air sacs of the lungs.
patent ductus arteriosus (PDA) - a connection between the blood vessels of the heart and lungs that does not close as it should after birth.
Caucasian, male babies
maternal womb infection (chorioamnionitis)
a family history of asthma
What are the symptoms of chronic lung disease?
The following are the most common symptoms of CLD. However, each baby may experience different symptoms of the condition. Symptoms may include:
respiratory distress (rapid breathing, flaring of the nostrils, chest retractions)
continued need for mechanical ventilation or oxygen after a premature baby reaches 36 weeks gestation
Symptoms of CLD may resemble other conditions or medical problems. Always consult your baby's physician for a diagnosis.
How is chronic lung disease diagnosed?
Because CLD is a chronic disease and appears gradually, physicians must look at several factors. It is often diagnosed when a premature baby with respiratory problems continues to need additional oxygen after reaching 36 weeks gestational age. Chest x-rays compared with previous x-rays may show changes in the appearance of the lungs. The x-ray of lungs with CLD often have a bubbly, sponge-like appearance. X-rays are diagnostic tests which use invisible electromagnetic energy beams to produce images of internal tissues, bones, and organs onto film.
Treatment of chronic lung disease:
Specific treatment for CLD will be determined by your baby's physician based on:
your baby's gestational age, overall health, and medical history
extent of the disease
your baby's tolerance for specific medications, procedures, or therapies
expectations for the course of the disease
your opinion or preference
Treatment of CLD may include:
extra oxygen (to make up for the decreased breathing ability of the damaged lungs)
mechanical ventilation with gradual weaning as the baby's lungs grow and can do more of the work of breathing
medications such as:
bronchodilators (to help open the airways)
steroids (to help reduce inflammation)
limiting fluids and giving a diuretic medication to help reduce excess fluid which can worsen breathing ability
nutrition (to help the baby and the lungs grow)
immunization against lung infection by respiratory syncytial virus (RSV) and influenza
CLD can be a long-term condition. Some babies with CLD require mechanical ventilators for several months. Some babies will continue to require oxygen when they go home from the hospital, but most can be weaned from oxygen by the end of their first year. Babies with CLD may be at increased risk for respiratory infection and may have to be re-hospitalized.
Day 32: Recovery
We got in his morning about 8:30 and they said he actually had a pretty good night. The nurse gave him some morphine this morning because she thought he looked uncomfortable. I tried to touch him and he stopped breathing and set off the alarms...he pretty much did that all day, he REALLY wanted to be left alone. (the ventilator still breaths for him when he does that)
At rounds the Dr said she was very happy with how everything went yesterday. She was surprised by the need for 2 clips, but she said the hole was pretty big. She said it also could have been due to the fact that he is "old" and "big" haha, normally it is done on smaller preemies because babies his age would have either had the hole close on their own or been given medication earlier to close it but he was too sick in the beginning to get the meds and it can not be given after 14 days...which is how he ended up in surgery.
The Dr said she hopes to have him off the ventilator with in the next 48hrs and on to C-PAP
When infants are disconnected from a mechanical ventilator, they often require a form of assisted breathing called nasal continuous positive airway pressure (CPAP). A nasal CPAP device consists of a large tube with tiny prongs that fit into the baby's nose, which is hooked to a machine that provides oxygenated air into the air passages and lungs. The pressure from the CPAP machine helps keep a preemie's lungs open so he or she can breathe. However, the machine does not provide breaths for the baby, so the baby breathes on his or her own.http://www.thechildrenshospital.org/wellness/info/parents/20823.aspx
She said this is optimistic but she really would like him on it by the weekend...fingers crossed :)
At rounds the Dr said she was very happy with how everything went yesterday. She was surprised by the need for 2 clips, but she said the hole was pretty big. She said it also could have been due to the fact that he is "old" and "big" haha, normally it is done on smaller preemies because babies his age would have either had the hole close on their own or been given medication earlier to close it but he was too sick in the beginning to get the meds and it can not be given after 14 days...which is how he ended up in surgery.
The Dr said she hopes to have him off the ventilator with in the next 48hrs and on to C-PAP
When infants are disconnected from a mechanical ventilator, they often require a form of assisted breathing called nasal continuous positive airway pressure (CPAP). A nasal CPAP device consists of a large tube with tiny prongs that fit into the baby's nose, which is hooked to a machine that provides oxygenated air into the air passages and lungs. The pressure from the CPAP machine helps keep a preemie's lungs open so he or she can breathe. However, the machine does not provide breaths for the baby, so the baby breathes on his or her own.http://www.thechildrenshospital.org/wellness/info/parents/20823.aspx
She said this is optimistic but she really would like him on it by the weekend...fingers crossed :)
PDA Surgery
Patent Ductus Arteriosus (PDA)
The ductus arteriosus is a short blood vessel that connects the main blood vessel supplying the lungs to the aorta, the main blood vessel that leaves the heart. Its function in the unborn baby is to allow blood to bypass the lungs, because oxygen for the blood comes from the mother and not from breathing air. In full-term babies, the ductus arteriosus closes shortly after birth, but it frequently stays open in premature babies. When this happens, excess blood flows into the lungs and can cause breathing difficulties and sometimes heart failure. Patent ductus arteriosus (PDA) is often treated with a medication called indomethacin or ibuprofen, which is successful in closing the ductus arteriosus in more than 80% of infants requiring these medications. However, if medical therapy fails, then surgery may be required to close the ductus.
**Right after surgery, enjoying his drug induced sleep!**
**Henry's war wound from surgery, on his left side**
**The happy daddy post surgery!**
The ductus arteriosus is a short blood vessel that connects the main blood vessel supplying the lungs to the aorta, the main blood vessel that leaves the heart. Its function in the unborn baby is to allow blood to bypass the lungs, because oxygen for the blood comes from the mother and not from breathing air. In full-term babies, the ductus arteriosus closes shortly after birth, but it frequently stays open in premature babies. When this happens, excess blood flows into the lungs and can cause breathing difficulties and sometimes heart failure. Patent ductus arteriosus (PDA) is often treated with a medication called indomethacin or ibuprofen, which is successful in closing the ductus arteriosus in more than 80% of infants requiring these medications. However, if medical therapy fails, then surgery may be required to close the ductus.
**Right after surgery, enjoying his drug induced sleep!**
**Henry's war wound from surgery, on his left side**
**The happy daddy post surgery!**
Day 31: Surgery Day
**Jamie held his little elephant during the surgery..i had his little bear!**
UGH...this could possibly have been the longest day ever. On Monday they told us the surgery would be today, in the early afternoon, but when I went in for rounds this morning they said his had been pushed back to later in the day because a more serious case had presented itself overnight. So 12pm...1pm...2pm....3pm...go by, I took a walk through Washington Heights to take my mind of things...that'll do it!! lol
At about 2 we still hadn't heard anything and the nurse mentioned it might get pushed to the next day. NO WAY could I handle waiting another day. Finally at 3 something the surgeon came and said the surgery was on and they would start prepping soon. Yeah I wanted to pretty much throw up but i was happy it was finally going to be over.
Jamie had been waiting at work so I called him and he headed to the hospital. Finally about 4:45 they came and got him..it sucked, plain and simple. I started to lose it but quickly stopped, thinking I have a lot of tears waiting to come out and was scared I wouldn't know how to stop the flow. We headed down to get something to eat and wait. Luckily it is a quick surgery. We went back up at 6 and the nurse said he would be back soon and she would come get us when he was all set up again. About 10 minutes later the mother of the baby next to us came peeking in the room we were waiting in and told us he was back...that was so sweet of her, she was so happy for us...even her husband was looking for us out in the family lounge :)
Before we got a chance to go see him the surgeons found us and told us everything went great. They said he "behaved" and everything went smoothly. The hole in his heart was actually really big so they had to use 2 clips to close it but it was all done!! They said he would be sluggish for the night and need extra assistance from the ventilator but everything would be fine. We went to see him and he looked great!!! It was such a relief! He opened his eyes a couple of times but just for a second or so he definetly was out of it.
We stayed till about 9 to make sure everything was ok, we were so beat and finally had to head home. SO HAPPY that is over with!!!!!! Now we can move forward.
Monday, October 19, 2009
I HELD MY SON!!!!
I finally got to hold him!!! It was so awesome!! When I walked in I was looking at him and thinking he got bigger and then when she put him in my arms the reality of how small he is hit me. I just kept staring at him, I still can not believe we made him, it's unbelievable. Every day I wish he didn't have to be born so soon and go through all this stuff, but it is nice getting to meet him a little earlier :)
Sunday, October 18, 2009
Preeclampsia
What is Preeclampsia?
Preeclampsia is a disorder that occurs only during pregnancy and the postpartum period and affects both the mother and the unborn baby. Affecting at least 5-8% of all pregnancies, it is a rapidly progressive condition characterized by high blood pressure and the presence of protein in the urine. Swelling, sudden weight gain, headaches and changes in vision are important symptoms; however, some women with rapidly advancing disease report few symptoms.
Typically, preeclampsia occurs after 20 weeks gestation (in the late 2nd or 3rd trimesters or middle to late pregnancy), though it can occur earlier. Proper prenatal care is essential to diagnose and manage preeclampsia. Preeclampsia, Pregnancy Induced Hypertension (PIH) and toxemia are closely related conditions. HELLP Syndrome and eclampsia are other manifestations of the same syndrome. It is important to note that research shows that more women die from preeclampsia than eclampsia and one is not necessarily more serious than the other.
Globally, preeclampsia and other hypertensive disorders of pregnancy are a leading cause of maternal and infant illness and death. By conservative estimates, these disorders are responsible for 76,000 maternal and 500,000 infant deaths each year.
Last Updated: July 19, 2008
© 2000 - 2009 Preeclampsia Foundation
www.preeclampsia.org
www.
Preeclampsia is a disorder that occurs only during pregnancy and the postpartum period and affects both the mother and the unborn baby. Affecting at least 5-8% of all pregnancies, it is a rapidly progressive condition characterized by high blood pressure and the presence of protein in the urine. Swelling, sudden weight gain, headaches and changes in vision are important symptoms; however, some women with rapidly advancing disease report few symptoms.
Typically, preeclampsia occurs after 20 weeks gestation (in the late 2nd or 3rd trimesters or middle to late pregnancy), though it can occur earlier. Proper prenatal care is essential to diagnose and manage preeclampsia. Preeclampsia, Pregnancy Induced Hypertension (PIH) and toxemia are closely related conditions. HELLP Syndrome and eclampsia are other manifestations of the same syndrome. It is important to note that research shows that more women die from preeclampsia than eclampsia and one is not necessarily more serious than the other.
Globally, preeclampsia and other hypertensive disorders of pregnancy are a leading cause of maternal and infant illness and death. By conservative estimates, these disorders are responsible for 76,000 maternal and 500,000 infant deaths each year.
Last Updated: July 19, 2008
© 2000 - 2009 Preeclampsia Foundation
www.preeclampsia.org
www.
Friday, October 16, 2009
Day 27
Jamie and I were at the hospital last night until about 9:30 and then back this morning at 8....so tired. My mom took a picture of me and bella today and I actually have dark circles around my eyes. Lovely.
Yesterday Henry had a bit of a rough day, we're not sure if something was wrong with his breathing tube like it kept getting stuck or he was just filled with so much fluids and it was getting clogged but the alarms were going off all day saying he was having trouble breathing. We don't freak out anymore but it's still makes us very anxious. The night nurse said she worked on him alot last night to break up his chest congestion and this morning things seemed better. Today was actually a pretty quiet day while I was there. His breathing was good, his blood tests for gases were coming back good so I was happy.
I just talked to jamie who went back to the hospital after work and he said Henry was exhausted and not responding well to being fed (through a tube). They did a bunch of work on him after I left and he was totally worn out. The nurse called the Dr and she said to stop feeing him for the night with the formula to give him a break...he is continually get nutrients through IV's or PICC lines so he's not starving in any way :)
Hopefully he gets some good rest tonight. Jamie said the nurse tonight sucks...she's not forthcoming with info and she's making him feel like he is in the way....that's pretty annoying, hopefully we don't have her again. He said she is good with Henry and that is all that matters.
Yesterday Henry had a bit of a rough day, we're not sure if something was wrong with his breathing tube like it kept getting stuck or he was just filled with so much fluids and it was getting clogged but the alarms were going off all day saying he was having trouble breathing. We don't freak out anymore but it's still makes us very anxious. The night nurse said she worked on him alot last night to break up his chest congestion and this morning things seemed better. Today was actually a pretty quiet day while I was there. His breathing was good, his blood tests for gases were coming back good so I was happy.
I just talked to jamie who went back to the hospital after work and he said Henry was exhausted and not responding well to being fed (through a tube). They did a bunch of work on him after I left and he was totally worn out. The nurse called the Dr and she said to stop feeing him for the night with the formula to give him a break...he is continually get nutrients through IV's or PICC lines so he's not starving in any way :)
Hopefully he gets some good rest tonight. Jamie said the nurse tonight sucks...she's not forthcoming with info and she's making him feel like he is in the way....that's pretty annoying, hopefully we don't have her again. He said she is good with Henry and that is all that matters.
Thursday, October 15, 2009
Wednesday, October 14, 2009
Day 25: Groundhog Day
The Dr actually pointed out that today was day 25....if you asked me i would have said it was day 7 or something...i truly have no idea what day it is or how long this has been going on. Part of me feels like he was just born yesterday and all the rest is just a bad dream. Actually it feels like "Groudhog Day"...every day is exactly the same and i'm walking through a fog..pretty much thinking WTF? Wake up exhausted, drive an hour to the city, sit with Henry, listen to the Dr talk about my son and his "severely damaged lungs", using words i have no clue what they mean, listening to endless beeps and alarms as Henry and other babies forget to breathe, read a little, day dream of when this will be over, pack up, say I love you to my son and drive the hour back home, walk in the door to the biggest smile on Bella's face, play with her, eat dinner and go to bed. Somewhere in there Jamie and I get to see eachother...usually at the hospital. It's a very strange exsistence right now...
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