When a Parent is Grieving the Loss of a Child

The parent-child bond is one of the most meaningful relationships a person will ever experience. Parents who have lost a child will often feel that a part of them has died. The despair and pain that follow a child’s death is thought by many to exceed all other experiences. Parents are simply not supposed to outlive their children and no parent is prepared for a child’s death.

The length of a child's life does not determine the size of the loss. Parents are intimately involved in the daily lives of young children, and their child’s death changes every aspect of family life, often leaving an enormous emptiness. Parents may be less involved in the everyday lives of older children and adolescents, but death at this age occurs just when children are beginning to reach their potential and become independent individuals. When an adult child dies, parents not only lose a child, but often a close friend, a link to grandchildren, and an irreplaceable source of emotional and practical support. Parents who lose an only child also lose their identity as parents, and perhaps the possibility of grandchildren.

When any child dies, parents grieve the loss of possibilities and all of the hopes and dreams they had for their child. They grieve the potential that will never be realized and the experiences they will never share. When a child dies, a part of the future dies along with them.

Common grief reactions

Grief reactions following the death of a child are similar to those following other losses, but are often more intense and last longer. Parents commonly experience the following grief reactions:

• Intense shock, confusion, disbelief, and denial ~ even if the child's death was expected
• Overwhelming sadness and despair, so bad that facing daily tasks or even getting out of bed can seem impossible
• Extreme guilt ~ some parents will feel they have failed in their role as their child's protector and will dwell on what they could have done differently
• Intense anger and feelings of bitterness and unfairness at a life left unfulfilled
• Fear or dread of being alone and overprotecting their surviving children
• Feelings of resentment toward parents with healthy children
• Feeling that life has no meaning and wishing to be released from the pain or to join the deceased child
• Questioning or loss of faith or spiritual beliefs ~ assumptions about the world and how things should be do not fit with the reality of a child's death
• Dreaming about the child or feeling the child's presence nearby
• Feeling intense loneliness and isolation, even when with other people—parents often feel that the magnitude of their loss separates them from others and that no one can truly understand how they feel

Some people expect that grief should be resolved over a specific time, such as a year, but this is not true. The initial severe reactions are not experienced continuously with such intensity but rather with periods of intense grief that come and go over a period of 18 months or more. Over time, waves of grief gradually become less intense and less frequent, but feelings of sadness and loss will likely always remain.

Developmental milestones in the lives of other children can trigger emotions of grief even years after a child's death. Significant days such as graduations, weddings, or the first day of a new school year are common grief triggers. Parents frequently find themselves thinking about how old their child would be or what he or she would look like or be doing if he or she were still alive.

 Differences in grieving between mother and father

Mothers and fathers may grieve in different ways. One parent may find talking helps, while the other may need quiet time to grieve alone. Cultural expectations and role differences also affect how men and women grieve. Men are often expected to control their emotions, to be strong, and to take charge of the family. Women may be expected to cry openly and to want to talk about their grief. A working father may become more involved in his job to escape the sadness and daily reminders at home. A stay-at-home mother may be surrounded by constant reminders and may feel she lacks a purpose now that her job as caregiver has abruptly ended. This is especially true for a parent who spent months or even years caring for a child with cancer.

Differences in grieving can cause relationship difficulties at a time when parents need each other's support the most. One parent may believe that the other is not grieving properly or that a lack of open grief means he or she loved the child less. It is important for parents to talk openly about their grief and for each parent to understand and accept the other's coping style.

Helping siblings who are grieving

Parents are the focus of attention when a child dies and the grief of siblings is sometimes overlooked. The death of a sibling is a tremendous loss for a child ~ they lose a family member, a confidant, and a life-long friend. Parents are often preoccupied with the needs of a sick child and then become overwhelmed with their own grief when the child dies. The surviving siblings may misinterpret the parents’ grief as a message that they are not as valued as much as the child who died. Parents may be able to help siblings during this time of grief by:

• Making grief a shared family experience and including children in discussions about memorial plans.
• Spending as much time as possible with the surviving children, such as talking about the deceased child, just playing together, or doing something enjoyable.
• Making sure siblings understand that they are not responsible for the child's death and help them let go of regrets and guilt.
• Never compare siblings to the deceased child and make sure children know that you don't expect them to “fill in” for the deceased child.
• Set reasonable limits on their behavior, but try not to be either overprotective or overly permissive. It is normal to feel protective of surviving children.
• Ask a close family member or friend to spend extra time with siblings if your own grief prevents you from giving them the attention they need.

Helping yourself grieve

As much as it hurts, it is natural and normal to grieve. Some parents have found the following suggestions helpful while grieving:

• Talk about your child often and use his or her name.
• Ask family and friends for help with housework, errands, and taking care of other children. This will give you important time to think, remember, and grieve.
• Take time deciding what to do with your child's belongings ~ don't rush to pack up your child's room or to give away toys and clothes.
• Prepare ahead of time for how to respond to difficult questions like "How many children do you have?" or comments like "At least you have other children."Remember that people aren't trying to hurt you, rather they just don't know what to say.
• Prepare for how you want to spend significant days, such as your child's birthday or the anniversary of your child’s death. You may want to spend the day looking at photos and sharing memories or start a family tradition such as planting flowers.
• Because of the intensity and isolation of parental grief, parents may especially benefit from a support group where they can share their experiences with other parents who understand their grief and can offer hope.

Finding the meaning of life

• Parents report that they never really “get over” the death of a child, but rather learn to live with the loss. The death of a child may compel parents to rethink their priorities and reexamine the meaning of life. It may seem impossible to newly grieving parents, but parents do go on to find happiness and reinvest in life again. An important step for many parents is to create a legacy for their child Parents may choose to honor their child by volunteering at a local hospital or a cancer support organization. Or, parents may work to support interests their child once had, start a memorial fund, or plant trees in their child’s memory. It is important to remember that it is never disloyal to the deceased child to re-engage in life and to find pleasure in new experiences.

• Every child changes the lives of his or her parents. Children show us new ways to love, new things to find joy in, and new ways look to at the world. A part of each child’s legacy is that the changes he or she brings to a family continue after the child's death. The memories of joyful moments you spent with your child and the love you shared will live on and always be part of you.

A Homecoming With Only 1 Twin

Tiny feet

That should be taking baby steps

Instead left

Giant Footprints

Embedded in my heart.

Matching Feet

Now walking, take their baby steps

Alone.

They should have walked together

But only one will blaze a trail

His trailhead marked by

Giant Footprints

Left there by his stillborn twin, 

Buried wombmate memories that linger deep within.

-By Elizabeth A. Pector M.D.

I write this blog post not from being in the shoes of a parent who has faced this tragedy. I have identical twin girls, who were born prematurely, but are now 21 months old. They are healthy and living life together here and now. However, since I am a mom of twins, I do share that perspective with moms who have lost a twin. I share how it feels to grow 2 babies, how if feels to deliver 2 babies, to hold 2 babies. I share the feeling of seeing baby A emerge into this world followed shortly behind by baby B. Although, the part of our story that we share may be very short-it is that part of the story that is miraculous. It is a true gift unlike anything else. For any mother of twins...they know what I am talking about.

For this post I have tried to imagine what it might have been like to deal with the birth of 2 babies, the death of 1, and our eventual homecoming with a singleton. That is no easy task. I cried at the thought, but I pulled myself together because this post needed to be written for the moms out there who have been given this reality. We have a handful of members who it has happened to and there are countless others who exist. At first I wanted to write this post to give you resources, coping mechanisms, and stress relievers. However, when I sat down the thought of that last sentence sounded shallow and cold. I am not saying that all three of those things are not necessities, I just feel that being a twin mom myself what I would want more than anything would first be an understanding from others about what my thoughts and feelings were. An understanding to let me be until I was ready for stress relief, coping mechanisms, and resources. Let me sit in my sadness and my joy. Let me sit somewhere in the middle of life and death, because that is exactly where I am. 

I imagine being torn in half and ripped apart, and having to face each day that lay ahead with a precious baby who will no doubt feel my conflicting emotions of joy, anger, and grief on a daily basis. What would help me the most to face each day without my other twin? How would I cope, how could I, do I even want to try and cope? For each mom the answers to those questions will be different and will be dealt with at different times. It depends on so many elements. It depends on your personality type, your faith, your support, your husband, your family, your friends. How they treat the situation. How they help you to keep your lost twin alive. How much you pray. If you seek counseling. If you seek medication. The list is endless, it is ever changing, it is infinite. How you cope will be a battle you face for the rest of your life. It will never go away. You will never be the mom of a singleton, no matter how many people treat you as such.

As one article states, "Going home from the hospital with one baby is perhaps the first time that parents will begin to realize the full extent of what has happened. It can be a lonely mixture of joy and relief and also intense sadness. It can also be a major step along the way to realizing that indeed one of your twins has died. You may find it difficult to understand your conflicting emotions - joy and relief of one twin and a complete sadness and loss of another baby. In addition to your intense grief, you may feel very let down. As a parent expecting twins, you may have been the focus of admiration. Suddenly, the prestige is gone."

One of the most common human reactions to the death of a child is to avoid or underestimate the loss, even if it is unintentional. I hear this often from the moms who are part of our angel group and have experienced a singleton loss. They long to hear their baby's name, for people to ask questions about their baby, for people to keep their memory alive. Yet that does not come naturally for many people. It is uncomfortable for them and so instead of facing that head on many choose to ignore or avoid your loss. It seems the easier road is to just not talk about it and unfortunately by doing that they are only making the pain and healing harder on the parent who is actually experiencing the loss. For a parent who loses a twin I imagine this experience with others to be even worse. After all at least when you have twins you still have a baby who will smile, laugh, and make it even easier for the passerby, friend, or family member to act as though every thing is okay. You are doing okay. After all you have to be happy...you are a new mom! 

For me in my imaginary tragedy, I think the only thing that brings me comfort is knowing that my twin, who is alive on this earth with me, is also in some way feeling the loss that I am. I know that is is very different but it does exist. I am comforted in knowing that we will share that loss forever. It will never go away for either of us. I will always be a twin mom and my son or daughter will always have a twin sister or brother. That fact would bring me comfort. They were in my womb together sharing the tightest of living quarters, sharing food, sharing oxygen, growing together, sharing me for months. The three of us. They feel the loss too. I know full well that if my twin girls did not have each other they would not be the same, they would feel something wasn't right, they would know. So I imagine bonding over the loss with my twin I will share the rest of my life with. Maybe that sounds sad, but it is sad. That is the truth. I have to figure out how I can go on each day and find joy with my twin who is alive, so that they can grow up healthy and loved. If finding joy in our common loss is how I can grieve the loss of my twin and celebrate the life of my living twin then that is my answer...at least for today. I know their grief journey will be a very different one than mine, but I have peace in knowing that my living twin will know of his or her twinship as they grow up. I find comfort in knowing that I will be the one to teach them about twins and their sister or brother, and that one day they....we....will all reunite again in heaven. 

So now for some actual words from parents who have lost a twin: 

I encourage you to read this article where 4 families who have experienced the loss of a twin are interviewed. It is one of the best articles I found when researching for this topic as it explains in depth some of the feelings these parents face first hand. 

Now to the necessary ways to cope:

This is a list compiled from my research, my own past experiences with loss and grief, and from what I have learned from my angel parent friends. Please as always feel free to comment below with more coping techniques.

Read

Research books on amazon, at the book store, or at the library until you find a few that call out to you. The right books have a way of finding you. There are also Internet articles, websites, and blogs devoted to twin loss.

Prayer, church, and visiting with spiritual, supportive, and prayerful people 

Find a face to face support group with people who have similar experiences

Join an online message board or angel group

We have one on facebook just visit the following link and ask to be added to our angel group. This is great for interaction at any time of the day or night with people who can relate.

Find a simple pleasure to enjoy

Like going to Starbucks to get a coffee, finding something on you tube you know will make you laugh, or finding a sitcom that is "light, fluffy, and funny" that you love. Playing a game on your phone, baking, knitting, listening to music, etc.

Don't numb your feelings

Don't numb your emotions by shutting out the world, and denying your pain. Accept your pain, embrace it, feel it, and work through it.

Know this isn't the end

Believe that your child always surrounds you, and though you may not be able to see or hear him, he’s always there, and in your darkest hours, you will feel him or her near.  If you don’t shut them out, your angels, will give you signs, little things to let you know, they are near and haven’t left you. You will see your loved one again one day. Hope, faith, and love, is boundless & important,  in life and in death.

Cry & Laugh 

Both are irreplaceable outlets for emotion 

If you need to seek professional help seek it

There are grief counselors, christian counselors, psychologists and psychiatrists. Do not allow the feelings of others on the subject of professional help to influence your decision to seek help. 

Create a way to remember your child 

One of our angel moms planted a peach tree in her daughter's memory. Find a special song, create a memory book. Attend a memorial gathering once per year - here you will share your loss with others and honor your child's memory. October 15th is a national day for infant and pregnancy loss remembrance day. Find a gathering near you at this website http://www.october15th.com/

Resources on the web

www.climb-support.org

This website is filled with personal stories, inspiration, and more for parents who have experienced a multiples loss of some kind.

http://www.synspectrum.com/articles.html

Articles and lecture handouts on multiple birth, prematurity, loss, and other topics. Written by Elizabeth A. Pector, M.D.

http://www.twinlesstwins.org/HOME.aspx

This website is for twinless twins but has many great articles for grieving parents of twins as well and how to deal with having a twinless twin.

http://wombtwin-survivors.blogspot.com/2011/02/chapter-13-my-child-is-womb-twin.html

This website/blog is devoted to womb twin survivors. This group includes survivors of a stillbirth, miscarriage, abortion, and a vanishing twin pregnancy.

http://www.theapostolateofhannahstears.blogspot.com/

A prayerful christian blog site devoted to child loss, infertility, and adoption.

INSPIRATION 

http://www.northjersey.com/shopping/127647228_Tova_Gold_s_accessories_pay_tribute_to_twin_loss.html

Scentsy Fundraiser benefiting Preemie Prints

Hello Friends of Preemie Prints. My name is Sarah and I am a volunteer photographer for this remarkable organization. I am also a Scentsy Independent Consultant who is more than honored to announce a Preemie Prints Scentsy Fundraiser. I am donating 100% of my commissions from the fundraiser to Preemie Prints; my goal is to raise $600 so I need your help. The fundraiser starts September 1 and runs through September 23, please feel free to send the link to friends and family or anyone who would love to support Preemie Prints.

powered by:
Easy Fundraising

For those who are new to Scentsy, they are wickless candles and so much more. Scentsy offer three sizes of unique warmers: plug-in, medium and large. There are over 80 scents to choose from so there is definitely a smell for everyone. The new Fall/Winter scents are available September 1st. If you need help in narrowing down a scent, let me know and I can help. They also carry scents on the go: Scentsy Buddy, Solid Fragrance, Travel Tin, Scent Pak and Scent Circle. Scentsy makes a great gift for teachers, house warming, Christmas, birthdays, just because or for you. If you love candles, you will love Scentsy!

I am very excited to offer an additional way to support Preemie Prints as well as the children of the Ronald McDonald House in Houston. Starting September 1, Scentsy is introducing their first Charitable Cause Scentsy Buddy, Sasha, whose net proceeds benefit Ronald McDonald House Charities. Scentsy Buddies are adorable plush animal friends with a zippered scent pocket to hold a Scent Pak fragrance. Please consider purchasing a $30 Sasha bear to be directly donated to a child at the Ronald McDonald House of Houston. To do this simply click on the Paypal link and donate $31 to Preemie Prints (the extra $1 is to cover Paypal transaction fee); we will purchase a Sasha Scentsy Buddy on your behalf and donate them at the end of the month. Not only does Preemie Prints get over $6 for each Sasha purchase, a child will receive this great gift to hug and love on during their time of need – plus it is a 100% tax write off.

Start shopping now, please visit sarahalyse.scentsy.us and be sure to buy under Preemie Prints Fundraiser Party. Please be sure to visit the Scentsy Fundraiser benefiting Preemie Prints Facebook Event's Page for fundraiser updates. Thank you for your support, Sarah

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Music Therapy

Music Therapy in Neonatal Intensive Care

At a time when babies are usually growing and developing in their mother’s womb, premature infants are exposed to the busy medical environment of the neonatal intensive care unit and commonly endure painful treatments and procedures. The critical process of neurological development that takes place during the 3rd trimester is usually delayed due to the stress these infants experience in the NICU. Through specific research based techniques, music therapy has been proven successful in increasing premature infants’ tolerance to stimulation resulting in faster weight gain and a decreased length of stay. There are 2 main treatments music therapy uses in the NICU. The first is multimodal stimulation. This treatment is to help increase each baby’s tolerance to different types of stimulation in the NICU. Using live lullaby music sung with classical guitar accompaniment, the music therapist administers 3 different types of stimulation – auditory, tactile (massage) and vestibular (rocking). Through this process, each baby learns to tolerate the different sounds in the NICU as well as being touched and held. The second treatment is using a device called the PAL or Pacifier Activated Lullaby and is used with preemies who are having a hard time feeding. This machine helps to teach preemies the suck, swallow, breath reflex needed when being bottle fed using music as a reward each time the baby sucks. As a result, these babies gain weight and leave the hospital faster.

http://www.floridahospitalforchildren.com/en/specialties-and-programs/pediatric-music-therapy

HOPE in the NICU

“They say a person needs just three things to be truly happy in this world. Someone to love, something to do, and something to hope for.”   ~Tom Bodett

If you have a baby (or babies) in the NICU, then you have all 3 of these things. 

Scripture even tells us:  “And thou shalt be secure because there is hope.”  (Job 11:18).

Hope is what sometimes gets you through the hard days and keeps you going even when it doesn’t seem like you have anything left to give.  But, you still may have to wait because some things take time. Remember…..“Patience is the art of Hoping.”  ~Vauvenargues 

Hope these words encourage you this week….as you wait and hope!

Apgar Scores

Apgar Scores

The very first test given to your newborn, the Apgar score, occurs right after your baby's birth in the delivery or birthing room. The test was designed to quickly evaluate a newborn's physical condition after delivery, and to determine any immediate need for extra medical or emergency care. 

Although the Apgar score was developed in 1952 by an anesthesiologist named Virginia Apgar, you may have also heard it referred to as an acronym for: Activity, Pulse, Grimace, Appearance, and Respiration.

The Apgar test is always given to your baby a minimum of 2 times: once at 1 minute after birth, and again at 5 minutes after birth. Rarely - if there are serious problems with the baby's condition and the first two scores are low - the test may be scored for a third time at 10 minutes after birth.  See Kids Health to learn more about this topic

Infant Massage

Infant Massage

happier and healthier baby!Infant massage can help baby sleep better,
advance thier development and may raise IQ!
Infant massage may
relieve colic,
teething, constipation and nasal congestion.The benefits don't stop there.
Providing massage to baby helps to relax the caregiver.
Infant massage gives that special bonding time for
all involved.

How do you feel after a long, relaxing back rub? Pretty good, right? Well,
not only is your touch very soothing to your baby, but giving your baby a
massage can actually make you BOTH feel better! A certified infant massage
instructor joined us recently to tell us about all the benefits of infant
massage. Although infant massage has been an important part of parenting in
other countries, it has only begun to be accepted in the U.S. since the
early 1980s. Studies have shown that systematically touching your baby, skin
to skin, for as little as 12 minutes a day can offer many benefits. Not only
do the babies gain weight faster, but their neurological connections
actually improve and they are able to process input better!

You don't even have to devote a solid twelve minutes each day to massage
you could do it for two minutes six times a day if that is more convenient
for you. The important thing is that you are both relaxed, and that the
touch is skin to skin. In other words, pay attention to your baby's cues to
see if your baby is receptive at that time, and don't try to massage your
baby through a shirt or pajamas.  Also, some babies get really sleepy after
a massage while others become wide awake, so you may want to keep that in
mind before attempting a late night massage for the first time.

While infant massage is beneficial to all babies, it is especially good for
preemies and other children who are hypersensitive. These are the babies who
don't normally like to be touched or held, or don't like dirt on their skin,
or sand between their toes, or who are constantly being irritated by their
clothes. You'll definitely have to be patient and pay close attention to
their reaction to massages, but you are almost assured to see improvement in
their level of hypersensitivity. While doing a massage on these babies, try
to keep other sensory input to a minimum. In other words, don't have the TV
on or music playing, don't talk, and you may even want to avoid direct eye
contact during the massage.

When you're ready to try a massage, the first thing to do is to ask your
baby if he would like a massage. This may sound silly, but once your baby
realizes what a massage is they will usually let you know if they're ready
for one. Pay attention to them! Do they look away? They're probably not
interested. Do they maintain eye contact, or as they get older, maybe even
smile or lift their usual starting leg, you can probably assume that they're
ready to begin!  It is usually better to begin with the legs (one at a
time), then the arms (one at a time), and eventually work your way up to
their trunk and face.. Use a firm, but gentle pressure.

Preemies, or other babies who have spent time in the hospital, may be
especially sensitive to having their feet touched (thanks to all the heel
sticks they've experiences). If so, you can try massaging only the tops of
their feet, or avoid the feet altogether.

Here is a very brief description of what a massage may be like. Remember
if they let you know that they don't like a particular motion, stop doing
that particular motion.

Starting at the thigh, use a whole hand motion to stroke the entire length
of one leg from thigh to ankle.

Next, using a very light "Indian rub" motion (squeeze and twist), massage
the same leg from thigh to ankle

Eventually moving onto the top of their foot and their toes.

After a few minutes, begin massaging the foot and move toward the hip and
back toward the foot.

Finish off the "body part" (in this case, the leg) by lightly stroking the
entire leg with your fingertips. This stroking will signal that you're all
finished with that part of their body.

After completing steps 1-5 on the first leg, if baby seems receptive you can
move on to the other leg. Repeat the same five steps, and then lightly
stroke both legs with your fingertips to signal "all done with your legs."

If you'd like, you can then move on to do similar motions on first one arm,
then the other, and then onto their trunk and face. That's all there is to
it!  Well, not really, but that is "the Reader's Digest" version of it. To
learn more, look for one of the growing number of how-to books and videos on
the market.

-This article was taken from a certified infant massage therapist. I liked it because of the focus on preemies. We are trying to schedule a certified therapist for our upcoming Houston meeting and will broadcast that Live on our Preemie Prints livestream channel. If you would like to attend this live event please email amber@preemieprints.org.

Breathing in the NICU

 

Oxygen Therapy

Description/Purpose
Babies with breathing problems are usually admitted to the NICU. Most times, these breathing problems will require oxygen therapy. Normal air that we breathe is 21% oxygen. When oxygen is given to babies, it is measured in percentages, from 21% up to 100%. There are several different ways to administer oxygen to babies. The first is an oxygen hood (halo). This is used for babies who can breathe on their own but still need extra oxygen. A hood is a plastic dome or box with warmed and humidified oxygen inside. The baby's head is placed under the hood. Oxygen tents are the same set up as hoods, except that they are made of a soft, flexible plastic.

Another way to give oxygen is via nasal cannula (NC). This is made of soft, thin, plastic tubing through which oxygen flows. There are soft prongs that fit into the baby's nose so they can breathe the oxygen. This type of oxygen therapy is usually reserved for babies who are going to need oxygen for some period of time. Some infants will even go home on oxygen with a nasal cannula.

Side Effects and Risks
Prolonged oxygen therapy can be related to retinopathy of prematurity (ROP). This is why oxygen is weaned (decreased) as soon as possible. Sometimes, infants under hoods or tents can get chilled if the temperature of the humidified oxygen is not warm enough. Infants on nasal cannula oxygen can get dry or irritated noses from the cannula prongs.

 

Continuous Positive Airway Pressure (CPAP)

Description/Purpose
Many babies with respiratory conditions require extra oxygen. Some require a ventilator because they cannot breathe well enough on their own. There are also babies that breathe well enough to not need the ventilator, but need a combination of extra oxygen and pressure to help keep their lungs well inflated. CPAP can provide this last group with what they need. To deliver CPAP a tube (or tubes) is placed in the nose and air or extra oxygen is delivered through this tube to the back of the nose. This flow of air produces pressure that goes into the lungs to keep the lungs better inflated. Since the pressure from the CPAP is delivered to the back of the nose it is also called NPCPAP. NPCPAP might be used in conditions such as, Respiratory Distress Syndrome (RDS) when the baby needs more than extra oxygen, to try and prevent the need for a ventilator. Some babies, after they are taken off the ventilator, might be given NPCPAP to keep their lungs inflated. Also NPCPAP might be used on babies who have apnea such as Apnea of Prematurity to decrease the frequency or severity of the apnea. The main benefit of NPCPAP is the ability of delivering both extra oxygen and pressure without the need for the more invasive endotracheal tube and ventilator.

Side Effects and Risks
The main risks of this therapy are nasal irritation (from the tube) and abdominal distention (from pressure in the back of the nose that goes into the stomach instead of the lung). However, just like with the ventilator, babies on NPCPAP might be at risk for pneumothorax.

 

Mechanical Ventilator

Description / Purpose
Babies who are too small or sick to breathe on their own might be intubated with an endotracheal tube and placed on a conventional mechanical ventilator. Another word for ventilator is respirator. The ventilator delivers oxygen to the baby with each breath. It also gives pressure at regular, timed intervals to act as breaths for the baby. Another setting on the ventilator is the constant pressure to keep the lungs open. These settings on the ventilator are increased or decreased based on blood gases. Sometimes the support of a conventional ventilator is not enough for some babies. These babies might need to be placed on a high-frequency ventilator.

Side Effects and Risks
One of the risks to babies on ventilators is a collapsed lung, or pneumothorax. When a lung collapses, the air around it inside the chest needs to be removed in order for the lung to expand. This is done with a chest tube. Babies who are very premature when they are born might need the support of a ventilator for some time. The longer the babies require this support, the higher risk they have for scarring /damage in the developing lungs, called bronchopulmonary dysplasia.

 

High-Frequency Ventilator (HFV)

Description / Purpose
A high-frequency ventilator is a special ventilator that uses very high rates (often 480 to 840 breaths/minute) and very small opening pressures for each breath. These ventilators are especially useful for very tiny babies or babies with air leak.

Side Effects and Risks
Same as above.

 

Extra-Corporeal Membrane Oxygenation (ECMO)

Description / Purpose
The use of ECMO peaked in 1992 when over 1,500 infants in the United States were treated. Due to many improvements in care, currently fewer than 500 infants each year require treatment with ECMO. The most common conditions resulting in the need for ECMO are:

• Congenital Diaphragmatic Hernia (CDH)
• Meconium Aspiration Syndrome (MAS)
• Severe Pulmonary Hypertension
• Cardiac Malformations
• Severe Air Leak problems

The purpose of ECMO is to provide oxygen to the body when the lungs and/or heart are too sick to do the job. ECMO allows us to "rest" the lung and/or heart. Recovery of the lung and/or heart function usually occurs in 3–7 days, but might require 2–4 weeks

Side Effects and Risks
ECMO is the highest risk therapy used in the NICU. Due to this risk there are certain conditions that might prevent the use of ECMO.

• Significant bleeding that has occurred in the brain (intracranial hemorrhage)
• Prematurity with estimated gestation less than 34 weeks
• Congenital malformations that are known to produce death, regardless of support
• Severe pulmonary disease that has persisted for more than 14 days
• Severe Air Leak problems

Several important risks that can occur with ECMO include:

• Rupture of the ECMO circuit tubing
• Formation of blood clots (thrombosis/clots) in the tubing and the baby
• Due to the use of "blood thinners", bleeding can occur in any part of the body
• ECMO requires the use of many blood transfusions; reactions and risks are possible
• Infection is always a risk factor with ECMO
• Death can occur due to the underlying lung/heart problems or from complications of ECMO; infants who require treatment with ECMO are at risk for long-term lung, neurologic, and developmental problems

 

Tracheostomy

A tracheostomy is a surgical procedure to create an opening through the neck into the trachea (windpipe). A tube is usually placed through this opening to provide an airway and to remove secretions from the lungs. This tube is called a tracheostomy tube or trach tube.  General anesthesia is used. The neck is cleaned and draped. Surgical cuts are made to expose the tough cartilage rings that make up the outer wall of the trachea. The surgeon then creates an opening into the trachea and inserts a tracheostomy tube.

 

Why the Procedure Is Performed:

A tracheostomy may be done if you have:

• A large object blocking the airway
• An inherited abnormality of the larynx or trachea
• Breathed in harmful material such as smoke, steam, or other toxic gases
• Cancer of the neck, which can affect breathing
• Breathed in harmful material such as smoke or steam
• Paralysis of the muscles that affect swallowing
• Severe neck or mouth injuries
• When you can't breathe on your own

 

Risks:

The risks for any anesthesia are:

• Problems breathing
• Reactions to medications

The risks for any surgery are:

• Bleeding
• Infection
• Erosion of the trachea (rare)
• Nerve damage
• Scar tissue in the trachea

After the Procedure:

If the tracheostomy is temporary, the tube will eventually be removed. Healing will occur quickly, leaving a minimal scar.

 

 

 

NICU GIFT BAG FUNDRAISER

Time	Monday, August 8 at 4:00am - September 30 at 7:00am
Location	National Drive
Created By	Preemie Prints
More Info	Preemie Prints is holding a drive for our NICU gift bags. We would like to collect at least 500 individual items during the month of August-September. NICU families face a difficult journey when their baby is born early or with serious health concerns. One of our missions is to share hope through the distribution of gift bags while families are in the NICU! As of now we have been able to provide gift bags to families in the Brazos Valley, Houston, and Temple areas. We would like to continue our mission of delivering these gift bags in person and expand their distribution to our online private national NICU family group members! Anytime we have a current NICU family in our group we would like to send them a wonderful care package to bring a smile to their face and give a little comfort during this scary time. We cannot expand this part of mission without donations from our preemie community, family, and friends. So we ask that you donate at least 1 item or make a monetary donation of $2 so that we can donate 1 item in your name! On behalf of NICU families across the US thank you so much for being a part of Preemie Prints! What are examples of items that may be in a NICU gift bag? Information and books on premature babies and life in a NICU Brand new or handmade (new please) preemie clothes Preemie hats Preemie diapers Blankets Gift cards for food delivery, restaurants, & grocery stores Hand sanitizer Kleenex Journals Nutritious snacks (non perishable) Scented hand lotion Books to read to baby Soothing music cd Reusable water bottles Teas, relaxing bath items for mom, etc. You can send your item to Preemie Prints 2306 Kendal Green Cir. College Station, TX 77845 If you live in the Houston area and would like to arrange for a pick up of your items please contact our Houston chapter assistant director allison@preemieprints.org If you live in the Brazos Valley you can drop your item off at our local donation drop off location -- Burger Boy!  Burger Boy is located at: 4337 Wellborn Rd Bryan, TX 77801 (979) 846-2146 If you would like us to donate a gift item in your name, you can donate $2.00 to our Paypal account https://www.paypal.com/cgi​-bin/webscr?cmd=_s-xclick&​hosted_button_id=W2GDV6YZB​MFBU. For a $25 donation, a NICU care bag will be donated in your name or in memory/honor of a loved one and you will receive a free copy of our e-cookbook with recipes and entries from our NICU member families! Donate $25 dollars herehttp://preemieprints.blogs​pot.com/p/donate.html