Wednesday, December 31, 2008
Hands-on
"Hands-on" - the time when nurses perform assessments - taking temps, changing diapers and introducing feeds - takes place every four hours. The hands-on concept confines the number of interruptions that a baby receives in a 24-hour period, resulting in lengthier amounts of resting time. Another important aspect of hands-on involves monitoring the baby's numbers. The activities noted above can often cause stress on a baby. The heart rate may increase dramatically and/or the baby may stop breathing periodically, both of which result in low oxygen saturation levels (reflected by a desat). The ability for Will to tolerate the hands-on experience is but one more step in the process of growing and maturing. In one of the pictures Liz is watching the monitors while she performs Will's assessment.
Nichole and I actively participate in hands-on. We take Will's temp and change his diapers. Never did I think that changing diapers would bring so much enjoyment.
Tuesday, December 30, 2008
More Medical Updates - December 29
Monday morning brought several tests. The results are as follows:
(1) Will's brain scan revealed that blood from the previous intraventricular hemorrhage has begun to dissipate and that no further hemorrhaging was evident.
(2) Will's chest x-ray revealed that lung fluid is still present. Dr. Akinola also informed us that Will's respiratory distress condition is now categorized as "chronic lung disease (CLD)." She explained to us that this condition is common in babies that receive assisted breathing methods and that with time, Will is likely to move beyond CLD. A description of CLD is included below.
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; birth weight less than 2,000 grams (Will was born at 1,150 grams); 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) and 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
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.
(1) Will's brain scan revealed that blood from the previous intraventricular hemorrhage has begun to dissipate and that no further hemorrhaging was evident.
(2) Will's chest x-ray revealed that lung fluid is still present. Dr. Akinola also informed us that Will's respiratory distress condition is now categorized as "chronic lung disease (CLD)." She explained to us that this condition is common in babies that receive assisted breathing methods and that with time, Will is likely to move beyond CLD. A description of CLD is included below.
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; birth weight less than 2,000 grams (Will was born at 1,150 grams); 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) and 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
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.
Sunday, December 28, 2008
A Medical Update This Morning
A quick update on Will's medical conditions:pictured: a NICU Dr. conducting routine morning rounds
Weight Loss
Will lost weight for the second consecutive day. He dropped 3 oz Friday, moving from 3.8lbs to just slightly over 3.5lbs. He lost an additional 40 grams Saturday, meaning he now weighs about 3.4lbs. On the surface, this may sound adverse. However, Will now receives Lasix aimed at eliminating excess fluid in his lungs and other body areas. To counter the diuretic, his feeds have been increased from 26ml to 29ml of breast milk every three hours. If all goes well, he should begin gaining weight soon.
Tachypneic Breathing Patterns
Will continues to battle tachypnea issues - rapid breathing patterns associated with shallow breathing and lung fluid. Tachypnea is relatively common for premature infants that experience periodic breathing.
Nurses count Will's breaths over a one minute period. If the number of breaths per minute exceed 60, then he is described as being tachypneic. Presently, this does not seem to be a major concern. But as with all premature babies, even the smallest concerns run the risk compounded effects due to the baby's size and development stage. The NICU medical staff is monitoring the situation closely but are optimistic that a combination of a reduction in lung fluid and time/growth will eliminate the tachypnea. For Nichole and I, we can't wait for the day when Will has a strong and steady breathing pattern.
Saturday, December 27, 2008
Latest from the NICU ... 32 weeks, a good day, weight loss and his great-grandfather
Overall, Will had another good day, experiencing only a small amount of deep desats. What a way to celebrate his 32nd gestational week.
The nurses continue to chase his oxygen, meaning they increase the percentage (anywhere from 25% to almost 40%) of supplemental oxygen in an effort to ensure consistent oxygen saturation levels. We've been told two things (1) periodic breathing/resulting in low sat rates is common in premature infants and (2) typically, babies grow out of periodic breathing. In some cases, medical intervention/treatments are needed to correct the problem. We certainly hope he grows out of this - tomorrow would not be too soon! In the meantime, caffeine doses are given to help regulate breathing patterns. However, the fact that his lungs continue holding fluid makes breathing a bit more difficult and shallow. With the diuretic aid attacking the fluid, we too hope this remedies itself.
As for the fluid, Will lost 3 oz (90 grams) today. He now weighs just over 3.5 oz. We are optimistic that the weight loss was directly related to the Lasix (diuretic) dose.
Will met his great-grandfather, Arthur William Bayer (Will's namesake), for the first time today. Nichole and I were so pleased he made the 4 hour trip from Mt. Vernon, bringing along Will's Aunts, Megan and Heather, ... a very special Christmas gift indeed.
And for those of you who continue to support Will, Nichole and me with your thoughts and prayers, please know we are deeply thankful. We ask that you keep the other NICU babies in mind too. There are close to 60 babies in the St. Vincent Women's NICU, many of which face extreme odds. It is hard to describe the moving stories and scenes we've witnessed during our first month in the NICU. It is truly an amazing place.
The nurses continue to chase his oxygen, meaning they increase the percentage (anywhere from 25% to almost 40%) of supplemental oxygen in an effort to ensure consistent oxygen saturation levels. We've been told two things (1) periodic breathing/resulting in low sat rates is common in premature infants and (2) typically, babies grow out of periodic breathing. In some cases, medical intervention/treatments are needed to correct the problem. We certainly hope he grows out of this - tomorrow would not be too soon! In the meantime, caffeine doses are given to help regulate breathing patterns. However, the fact that his lungs continue holding fluid makes breathing a bit more difficult and shallow. With the diuretic aid attacking the fluid, we too hope this remedies itself.
As for the fluid, Will lost 3 oz (90 grams) today. He now weighs just over 3.5 oz. We are optimistic that the weight loss was directly related to the Lasix (diuretic) dose.
Will met his great-grandfather, Arthur William Bayer (Will's namesake), for the first time today. Nichole and I were so pleased he made the 4 hour trip from Mt. Vernon, bringing along Will's Aunts, Megan and Heather, ... a very special Christmas gift indeed.
And for those of you who continue to support Will, Nichole and me with your thoughts and prayers, please know we are deeply thankful. We ask that you keep the other NICU babies in mind too. There are close to 60 babies in the St. Vincent Women's NICU, many of which face extreme odds. It is hard to describe the moving stories and scenes we've witnessed during our first month in the NICU. It is truly an amazing place.
Friday, December 26, 2008
Thursday, December 25, 2008
Christmas Eve Update
Nichole and I had a wonderful Christmas Eve at the NICU. Will seems to be doing great and it appears he's lost some water weight. Today was the first in several that he did not gain weight. We were told that the diuretics might take a couple days to produce results. Visually however, Will seems less puffy. Also, he has tolerated his feeds, with no residual. His numbers were fairly consistent and he frequently desat high. Hopefully, this is a sign of increasing improvements.
As for Christmas Eve in the NICU - our experience was quiet and peaceful. Tonight, Nichole and I prepared small gift bags for each child on our floor - nurses will hand them out sometime later or in the morning. There are currently 25 NICU children on our floor and the NICU above us holds twice as many beds. I am unsure how many children are on in the 3rd floor NICU. I do know there are at least 4, as a woman on the 3rd floor gave birth to quadruplets this morning!
This time of year we are reminded of our many blessings. We have a strong son, who was eager to get started in this world, wonderful family and friends that continue to provide support and we receive great care at the NICU. Thanks to everyone.
Wednesday, December 24, 2008
Christmas Eve in the NICU ...
Nichole and I'd like to say thank you for all the wonderful cards and holiday wishes - they've made all the difference this Christmas Eve.
I've included two pictures of Will in his new outfit taken today.
The Not So Good Weight Gain
Happy Christmas Eve Everyone,
A quick update ... Will is likely to start diuretics today. Yesterday he gained 70 grams, taking his weight to 3lbs. 7oz. Normally weight gain is a good thing, but in this case the doctors and nurses presume that the weight gain is actual fluid retention. Diuretics will not only help the swelling in his extremities but the help reduce lung fluid too.
Also, you might notice the tubes on Will's head. This is the IV that is used to administer the blood transfusions. We had hoped to take a Christmas photo with a hat knitted by our friend Wendy. Unforunately, the hat is not an option today. On the other hand, we were lucky to have a few photos taken a coupled days ago with another hat that was knitted by his Aunt Elizabeth. Thanks to both Elizabeth and Wendy!
More later ...
Tuesday, December 23, 2008
Afternoon Update
Much like drivers on Indy's icy roads, Will also had an adventurous day. Following the early morning blood transfusion, Will continued to desat frequently. By early afternoon the doctors agreed that Will should undergo an immediate chest and stomach x-ray. The rest of the afternoon was full of projectile vomit and fluctuating oxygen and respiratory rates.
The x-ray was negative to larger scale problems but revealed a "haze" that covers his lungs. The haze is, in general terms, actually a form of lung fluid. The little guy's breathing isn't strong enough yet to clear his lungs. The doctors will continue to monitor the fluid closely and we are assured that a fairly large number of premature babies experience this problem. In many cases, as the baby grows stronger it develops the ability to clear the lungs. In other cases, babies are given diuretics to combat the problem.
As Nichole and I prepared to travel home for dinner, Will was resting comfortably with steady numbers. I have to admit that it is quite sad seeing him with the IV attachment located in the scalp above his forehead. This was used for the blood transfusion and won't be removed for some time.
The x-ray was negative to larger scale problems but revealed a "haze" that covers his lungs. The haze is, in general terms, actually a form of lung fluid. The little guy's breathing isn't strong enough yet to clear his lungs. The doctors will continue to monitor the fluid closely and we are assured that a fairly large number of premature babies experience this problem. In many cases, as the baby grows stronger it develops the ability to clear the lungs. In other cases, babies are given diuretics to combat the problem.
As Nichole and I prepared to travel home for dinner, Will was resting comfortably with steady numbers. I have to admit that it is quite sad seeing him with the IV attachment located in the scalp above his forehead. This was used for the blood transfusion and won't be removed for some time.
In other news ...
Will took a big step yesterday by transitioning to the use of clothing. Will is no longer on a personal temp probe. Rather, a consistent temperature is maintained inside his incubator. This encourages Will to regulate his own temp.
Blood Transfusion - Part II
This morning Nichole and I talked to both Dr. Weaver and Liz our night nurse. Will received a blood transfusion between 4:00 and 5:00 AM. The blood was administered through his scalp. For the meantime, a small tube will remain attached to his scalp in case additional transfusions are needed. Liz commented that during the procedure Will experienced several Bradycardia ("Brady") that required stimulation to raise his heart rate - obviously something we didn't want to hear. We were informed that bradys aren't necessarily common with a blood transfusion and were more likely the result of the many preemie issues he faces.
Last night I began to feel sick, so I decided to remain at home. Germs have no place in the NICU. Nichole stayed with Will until after midnight. While holding him, Nichole spoke to him and explained what has happening and encouraged him to stay strong. Liz lowered the incubator so that Nichole could see him as she sat next to him. Nichole said that Will was awake and looked at her intently as she spoke to him.
Liz said this morning at 6:00 AM that Will handled the procedure well, cried very little and was unusually calm for a baby poked by numerous needles.
Last night I began to feel sick, so I decided to remain at home. Germs have no place in the NICU. Nichole stayed with Will until after midnight. While holding him, Nichole spoke to him and explained what has happening and encouraged him to stay strong. Liz lowered the incubator so that Nichole could see him as she sat next to him. Nichole said that Will was awake and looked at her intently as she spoke to him.
Liz said this morning at 6:00 AM that Will handled the procedure well, cried very little and was unusually calm for a baby poked by numerous needles.
Monday, December 22, 2008
Blood Transfusion Tonight
Sometime later tonight Will will undergo a blood transfusion. His need for additional blood was discovered through a hematocrit exam earlier today. This exam, in general terms, measures red blood cell and hemoglobin counts. Will is running a deficit in both areas. Adding a small amount of blood (a little more than a tablespoon for a baby his size) will increase the amount of oxygen that is delivered throughout the body.
Over the past few days, Will has required increased oxygen levels. We hope the transfusion will lessen his need for the supplement. Should this deficit be the cause of his problem, it is likely the results will be felt by tomorrow. If a change is not realized by tomorrow, then the problem is likely due to something else, such as infection or internal bleeding.
As for the procedure itself. The blood will be administered by two nurses over a 1 to 2 hour period. Fortunately, a co-worker of Nichole's was in town this past week for a business meeting. During that visit Nichole learned that her friend's blood was 0 negative and cmv negative - the magic recipe for Will. The friend gave blood at the Indiana blood bank between the conclusion of her meeting and her flight later that afternoon. She did so while braving treacherous ice conditions. We can't thank her enough.
More later.
Over the past few days, Will has required increased oxygen levels. We hope the transfusion will lessen his need for the supplement. Should this deficit be the cause of his problem, it is likely the results will be felt by tomorrow. If a change is not realized by tomorrow, then the problem is likely due to something else, such as infection or internal bleeding.
As for the procedure itself. The blood will be administered by two nurses over a 1 to 2 hour period. Fortunately, a co-worker of Nichole's was in town this past week for a business meeting. During that visit Nichole learned that her friend's blood was 0 negative and cmv negative - the magic recipe for Will. The friend gave blood at the Indiana blood bank between the conclusion of her meeting and her flight later that afternoon. She did so while braving treacherous ice conditions. We can't thank her enough.
More later.
NICU Nurses
The importance of the NICU nurse cannot be overstated. We are blessed that the St. Vincent Women’s NICU nurses provide such excellent care.
The relationship between parents and the NICU nurse furthers an interesting phenomenon – the bond between parents, child and nurse. With an unexpected premature birth - emotions run high and parents are thrust into an austere, frightening, sterile world. The nurse quickly becomes a lifeline for the child and a Godsend for the parent with translations, explanations and a friendly face.
At St. Vincent Women’s NICU, a nurse typically cares for only two, and in some cases three, babies simultaneously. This translates into concentrated child care. The level of care increases even more with the designation of a “primary nurse,” which guarantees that the baby receives continuity in staff. We are so thankful, not only for all NICU nurses, but our primary nurses Liz and Breanne.
Sunday, December 21, 2008
Bathtime in the NICU
Mom and Liz (our favorite nighttime nurse) gave Will a bath ... after his diaper incident that evening, the bath was needed!
Friday, December 19, 2008
3LBS!!!!!
The Big Man crossed the 3lb mark tonight - doing so on the day he eclipsed the 31st gestational week. What a great way to celebrate his 24th day. He has now gained just over 9 ounces since his birth.
On the Cusp of Three Pounds ...
Will gained another 40 grams today. He now weighs 2lbs. 15 ounces. With any luck, he'll hit 3lbs this weekend.
Today marks Will's 31st gestational week.
Today marks Will's 31st gestational week.
Thursday, December 18, 2008
Wednesday, December 17, 2008
Big Boy
The big man put on 2oz today. This follows 2 days of weight loss/and no gain.He now weighs 2lbs 14oz.
Tuesday, December 16, 2008
Monday, December 15, 2008
Will Gray - 20th day
We are starting this blog to keep family and friends updated on Will's progress. Will is 20 days old today and is doing well. He continues to amaze us with his strength and resilience. His weight is now 2lbs. 11oz. We are thankful for each new day and are grateful for the professionals at St. Vincent Women's Hospital NICU. We also thank everyone for their continued prayers, well-wishes and thoughts - they mean the world to Will, Nichole and me.
Wednesday, December 10, 2008
Feeding Will
Currently Will is fed breast milk through a feeding tube. Today was the first day his food was not supplemented by the TPN (through an IV). This means the PICC line was removed from his foot.
Monitors
Every NICU parent can speak to the anxiety associated with watching numbers. The monitor
provides the status of Will's heart rate, respitory rate, oxygen saturation level and blood pressure. When a particular number exceeds registered limits an alarm sounds and a red light located above the cubicle flashes until the number returns to its prescribed normal range. The moment a parent first hears an alarm can only be described as sheer terror - the stomach drops instantly. Over time the parent learns to interpret the numbers and to adjust emotions accordingly. Nonetheless, a large portion of NICU time is spent monitoring the monitors as depicted in this picture.
provides the status of Will's heart rate, respitory rate, oxygen saturation level and blood pressure. When a particular number exceeds registered limits an alarm sounds and a red light located above the cubicle flashes until the number returns to its prescribed normal range. The moment a parent first hears an alarm can only be described as sheer terror - the stomach drops instantly. Over time the parent learns to interpret the numbers and to adjust emotions accordingly. Nonetheless, a large portion of NICU time is spent monitoring the monitors as depicted in this picture.
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