Books on Prematurity and the NICU

The NICU Rollercoaster
By Nicole E. Zimmerman and Edward J. Sprague

The NICU Rollercoaster is a true story about premature twins and the ups and downs of their time in the NICU. Containing personal blog posts and helpful information for parents coping with the issues of having a preemie. Boy twin Ronan battled brain bleeds, NEC, surgeries, breathing issues and other common medical problems preemies may have, as well as still needing a g-tube after coming home. His sister, Julie, did do a bit better, however she did need to stay on oxygen after going home.  Other topics covered include: kangaroo care, TIP feeding, nursing staff changes, brain bleeds, temperature control, medical overviews and tips on coping with these stressors are provided, as are a good set of references for you to further your education.  Purchase here

Newborn Intensive Care: What Every Parent Needs to Know

By Jeanette Zaichkin

This book is a great introduction to the world of preemies.  It deals with coping with premature birth of your child and/or children. It serves as a wonderful guide to the care given to your premature baby while in the NICU, and educates and supports preemie parents from entry to the world of the NICU straight to the transition home. This reference book is something you will turn to again and again, to understand different medical events and techniques that your preemie may encounter during their stay in the hospital.

Purchase here

Parenting Your Premature Baby and Child: The Emotional Journey
by Deborah L. Davis and Mara Tesler Stein.

The premature birth of your child tosses you and your family into a whirlwind of emotions, where it seems sometimes you will never touch down. This book will provide an emotional map per say for you from the first shock of the news you will be having a premature child and your first encounter seeing your new preemie. It goes on to discuss the journey of your time in the NICU and then on to your time at home. Topics include the emotional implications of early delivery, physical recovery, the NICU experience, settling in at home, development and growth, challenges, special needs, moving on, subsequent pregnancies and much more. The authors' descriptions and advice are backed by quotes from experienced parents and preemie support groups, which will surely touch your heart. Purchase here

Preemies : The Essential Guide for Parents of Premature Babies
by Dana Wechsler Linden, Emma Trenti Paroli, Mia Wechsler Doron M.D.

This is in my opinion one of the most comprehensive books for parents of preemies currently available. It focus’s on preemies and their care, and will provide the answers to many of the questions you seek as the parent of a new preemie or a preemie toddler. Purchase here

Pediatric Massage: For the Child with Special Needs
by Kathy Fleming Drehobl, Mary Gengler Fuhr

Over-reaction to touch and other stimulus is a common problem for preemie babies, which may continue on into child and adulthood. This is a nice reference tool into understanding how to touch them, calm them and, overall help them if they are feeling stressed. Purchase here

Where's the Evidence? : Debates in Modern Medicine
By William A. Silverman

This is a collection of essays written by William A. Silverman, who is a pioneer in neonatology and is well regarded for conducting one of the most important randomized control trials in medicine. He has truly mastered the art of explaining the most complex and critical issues in medicine in terms that are understandable, and useful to parents going through the struggle of the NICU, which I found very helpful in that, there was so much going on, you try to understand it all but let’s face it you don’t always do. Purchase

Breast Feeding Your Premature Baby
by Gwen Gotsch

Mother's milk has been scientifically proven to help babies born premature in so many different ways. This book will walk you through those studies and explain how important it can be to try and breastfeed if only for a month. Purchase

By Preemie Prints Blog Post Contributor: Sarah Doyle

In Honor of Memorial Day

America the Beautiful:

O beautiful for spacious skies, For amber waves of grain, For purple mountain majesties Above the fruited plain! America! America! God shed his grace on thee And crown thy good with brotherhood From sea to shining sea! O beautiful for pilgrim feet Whose stern, impassioned stress A thoroughfare for freedom beat Across the wilderness! America! America! God mend thine every flaw, Confirm thy soul in self-control, Thy liberty in law! O beautiful for heroes proved In liberating strife. Who more than self the country loved And mercy more than life! America! America! May God thy gold refine Till all success be nobleness And every gain divine! O beautiful for patriot dream That sees beyond the years Thine alabaster cities gleam Undimmed by human tears! America! America! God shed his grace on thee And crown thy good with brotherhood From sea to shining sea! O beautiful for halcyon skies, For amber waves of grain, For purple mountain majesties Above the enameled plain! America! America! God shed his grace on thee Till souls wax fair as earth and air And music-hearted sea! O beautiful for pilgrim feet, Whose stern impassioned stress A thoroughfare for freedom beat Across the wilderness! America! America! God shed his grace on thee Till paths be wrought through wilds of thought By pilgrim foot and knee! O beautiful for glory-tale Of liberating strife When once and twice, for man's avail Men lavished precious life! America! America! God shed his grace on thee Till selfish gain no longer stain The banner of the free! O beautiful for patriot dream That sees beyond the years Thine alabaster cities gleam Undimmed by human tears! America! America! God shed his grace on thee Till nobler men keep once again Thy whiter jubilee!

A Memorial Day Prayer:

Eternal God, Creator of years, of centuries, Lord of whatever is beyond time, Maker of all species and master of all history -- How shall we speak to you from our smallness and inconsequence? Except that you have called us to worship you in spirit and in truth; You have dignified us with loves and loyalties; You have lifted us up with your loving kindnesses. Therefore we are bold to come before you without groveling (though we sometimes feel that low) and without fear (thought we are often anxious). We sing with spirit and pray with courage because you have dignified us; You have redeemed us from the aimlessness of things' going meaninglessly well. God, lift the hearts of those for whom this holiday is not just diversion, but painful memory and continued deprivation. Bless those whose dear ones have died needlessly, wastefully (as it seems) in accident or misadventure. We remember with compassion those who have died serving their countries in the futility of combat. There is none of us but must come to bereavement and separation, when all the answers we are offered fail the question death asks of each of us. We believe that you will provide for us as others have been provided with the fulfillment of "Blessed are those who mourn, for they shall be comforted."

The Infantryman:

The average age of the Infantryman is 19 years. He is a short haired, tight-muscled kid who, under normal circumstances is considered by society as half man, half boy. Not yet dry behind the ears, not old enough to buy a beer, but old enough to die for his country. He never really cared much for work and he would rather wax his own car than wash his father's; but he has never collected unemployment either. He's a recent High School graduate; he was probably an average student, pursued some form of sport activities, drives a ten year old jalopy, and has a steady girlfriend that either broke up with him when he left, or swears to be waiting when he returns from half a world away. He listens to rock and roll or hip-hop or rap or jazz or swing and 155mm Howitzers. He is 10 or 15 pounds lighter now than when he was at home because he is working or fighting from before dawn to well after dusk. He has trouble spelling, thus letter writing is a pain for him, but he can field strip a rifle in 30 seconds and reassemble it in less time in the dark. He can recite to you the nomenclature of a machine gun or grenade launcher and use either one effectively if he must. He digs foxholes and latrines and can apply first aid like a professional. He can march until he is told to stop or stop until he is told to march. He obeys orders instantly and without hesitation, but he is not without spirit or individual dignity. He is self-sufficient. He has two sets of fatigues: he washes one and wears the other. He keeps his canteens full and his feet dry. He sometimes forgets to brush his teeth, but never to clean his rifle. He can cook his own meals, mend his own clothes, and fix his own hurts. If you're thirsty, he'll share his water with you; if you are hungry, his food. He'll even split his ammunition with you in the midst of battle when you run low. He has learned to use his hands like weapons and weapons like they were his hands. He can save your life - or take it, because that is his job. He will often do twice the work of a civilian, draw half the pay and still find ironic humor in it all. He has seen more suffering and death than he should have in his short lifetime. He has stood atop mountains of dead bodies, and helped to create them. He has wept in public and in private, for friends who have fallen in combat and is unashamed. He feels every note of the National Anthem vibrate through his body while at rigid attention, while tempering the burning desire to 'square-away' those around him who haven't bothered to stand, remove their hat, or even stop talking. In an odd twist, day in and day out, far from home, he defends their right to be disrespectful. Just as did his Father, Grandfather, and Great-grandfather, he is paying the price for our freedom. Beardless or not, he is not a boy. He is the American Fighting Man that has kept this country free for over 200 years. He has asked nothing in return, except our friendship and understanding. Remember him, always, for he has earned our respect and admiration with his blood. For our Military "Lord, hold our troops in your loving hands. Protect them as they protect us. Bless them and their families for the selfless acts they perform for us in our time of need. Amen." Of all the gifts you could give a US Soldier, Sailor, US Marine or Airman, prayer is the very best one.

The Every Cry

The Every Cry

by Jeanna Plunkett

“Mommy, why do you cry on every Easter?  When we are dyeing our eggs, you always have tears running down your cheeks.  How can anyone be sad at Easter?”

Oh little one, my pregnancy with you was wrought with problems.  You don’t understand these big words now, but placenta previa caused mommy severe bleeding at 12 weeks.  Then, a horrible thing happened at 20 weeks:  my water broke.  That was just two weeks before Easter of 2002.  So, I spent Easter in the hospital.  In fact, it was Easter morning, just after your twin brothers left for church with Nana and Granddaddy all dressed up in their Easter suits, when Mommy got some really bad news.  Dr. Bailey did another ultrasound to take a peek at you and realized that my fluid level was critically low.  He couldn’t offer much hope that your lungs would be able to develop enough so that you could breathe.  He dismissed me from the hospital on that Easter Sunday of 2002 to go home and wait for labor to begin.  

So, when I look across the table and see the excitement of Easter in your eyes and your little fingers busy decorating eggs, I cry tears of celebration.  Each Easter I celebrate that “….with God all things are possible!”(Matt. 19:26). When medicine and mankind can offer us no hope, Jeremiah 17:7 tells us, “Blessed is the man that trusteth in the Lord, and whose hope the Lord is.”  With God, there is always hope!

“Mommy, why do cry on my every birthday?” 

The party was full of the laughter and squeals of excited children, so I didn’t even think he noticed. But, he did, and so, I explained, just as I had so many times before.

Jamey, you were born on April 22, 2002 at 1:11 a.m.  With a due date of August 8, 2002, this meant that you came way too early.  You were what they call “premature” and the doctor referred to you as a “24-weeker.”  The tears that I cry each birthday are tears of remembrance of the first time that I saw you, my teeny-tiny little 1 lb 9.8 oz. miracle baby boy.  They are tears of remembrance for the eight weeks that you could not breathe without the help of a ventilator.  I cry tears of remembrance for the 87 excruciating days that we spent in the NICU with you, not knowing if we would ever get to bring you home.  Some of those tears are even tears of remembrance for the day that they told us we would be bringing you home from the NICU.  This was wonderful news, except you would still need an apnea monitor and nasal canula for months to come, so I cry over the disappointment and the stress of those months, too.

  

“Mommy, why do you cry every time they sing that song at church?  And I see you look at Daddy and he holds your hand every time they sing it.”

“He’s got the whole world in His hands….He’s got the whole world in His hands…He’s got the whole world in His hands…..He’s got the whole world in His hands……..He’s got the tiny little baby in His hand….He’s got the tiny little baby in His hand…..He’s got the tiny little baby in His hand……”

Oh, sweet little one, I cry tears of remembrance of the days that you were too sick for me to hold in my arms.  Jamey, I remember when they told me that even the sound of my voice  was too much stimulation for you.  I felt helpless in every sense of the word.  But, even when I could not hold you, I knew that the Lord had you in the palm of His hand and that He was holding my hand, too.  Isaiah 41:13.   “For I the Lord thy God will hold thy right hand, saying unto thee, Fear not; I will help thee.”   

When they sing this precious song at church, I cry at the remembrance of when you were three years old and walked up to me with sleepy eyes, reached up both little arms, and said, “Mommy, I want to hold you.”

Precious NICU Mother, in 2 Kings 20:5, the Lord says, “I have heard thy prayer, I have seen thy tears…”  My recently released book, Prayers from the NICU:  A Mother’s Devotional, contains inspiring stories from our 87-day NICU journey with Jamey as well as stories from our brief NICU stay with the twins three years earlier.  A personal prayer journal is also provided for NICU mothers to record their baby’s progress and their personal requests to God during this most trying of times.  Never forget……God hears your every prayer from the NICU and sees the every cry.  For information on ordering Prayers from the NICU, visit www.nicuprayers.tateauthor.com.

Infant Massage

Noise in The NICU

As developmental care in the NICU continues to become a stronger force the high noise levels are coming into question. In my research I've come across the following article that confirms this is not a new idea, "Like libraries, hospitals used to be considered quiet zones. In her 1859 book "Notes on Nursing," Florence Nightingale railed against unnecessary noise, calling it "the most cruel absence of care." The article states that hospitals use to be quiet zones but as technology rapidly advanced so did the noise. It is proven that premature babies in a NICU environment have lower stress levels, thrive, and have a shorter recovery time when they get optimal rest and uninterrupted sleep. Although a baby may not "wake up" by opening their eyes and looking up at the world around them, when beeps are constantly going off their brain patterns reflect this stress. In addition to non stop beeps you get the occasional voice that may be a little on the noisy side, crying babies who may be "rooming" in, and the loud (to the preemie anyway) tapping on the incubator. All reasons why private rooms are proving to be most beneficial for developmental care. I came across another website that sells NICU noise meters. These things are selling! The website states that, "Noise from visitors and staff is best dealt with using a device such as the SoundEar as it is not influenced by the complicated human perception of noise". This makes sense and it seems to be a simply way to keep the noise under control.


Neonatal units, like most hospital environments, tend to be very poor acoustically due to hard, reflective surfaces. Beds are often closely spaced, visitors can talk loudly (especially the younger ones) and staff have to work quickly and move equipment about. Add to this the incubators being opened and closed, occasional tapping on the lid and items dropped accidentally and the noise levels soon become unpleasant for the baby. One of the biggest culprits is the alarm, which is clearly essential, but as the background noise levels get higher the alarm has to be louder still. A quieter background allows for quieter alarms.

Another article states that, "current literature supports the theory that neonates, particularly premature infants, are not sensory deprived but receive a bombardment of large amounts of stimulation. This stimulation is often noxious in nature and contributes to "overload." This article written in 2011 continues on to explain a study conducted where the NICU staff was educated on noise reduction and forced to change their speaking habits to be lower. In addition monitors were turned down and clipboards were not allowed to be placed on or near incubators. When comparing the data from before the study and after, they found the decibels decreased from an average of 70 dB to 68 dB in the NICU environment. Although, this is only 3 points it represents a 50 percent reduction of perceived noise intensity to a sick baby. These are great results. They continue on to state, "clearly, there are obvious benefits of reducing noise in the NICU. Decreased noise helps to improve infants' physiological stability and growth, the inci-dence/severity of hearing loss may be reduced, as well as long-term perceptual difficulties. A quieter, more nurturing NICU environment helps support the development of a well-regulated infant behavioral state. Moreover, noise reduction can promote infants' bonding with relatives and extend parent visitation. Additionally, staff members directly benefit, with the possibility of stress reduction." I think what is most interesting about the study is that these are very simple cost efficient changes that can be made and they are having a positive impact on the babies' development. Even in a semi-quiet NICU environment, like I would compare mine to, positive changes can me implemented. I distinctly remember numerous times a false alarm was sounding and a nurse let it go on for longer than it should have because she A) knew it was false and B) was busy with something else. In the womb a fetus is only exposed to low frequency sounds then when they come out they are then exposed to high frequency. If we could bring down all noise levels, even talk in a lower tone consistently, it seems it would be more comparable to the womb. It may get to a point where it seems extreme, especially when you are in the NICU environment all day long, working and parenting, but if the obvious goal is for these babies to thrive, develop at the fastest rate possible, and decrease the time they have to be in the hospital, as time goes on we may witness more and more noise control. Shhh!! You are about to enter a quiet zone....

References: 


http://speech-language-pathology-audiology.advanceweb.com/Article/Noise-in-the-NICU.aspx  


http://www.noisemeters.com/product/soundear/neonatal.asp

Music Therapy In The NICU

A Preemie Prints Story: Jessica and JD

I have 4 kids. Marrisa is my 11 year old daughter, Katie is my 6 year old step daughter, Viola is our 1 year old daughter, and our son Jonathan who is 6 weeks 5 days old today March 24, 2011 (36 weeks 5 days adjusted). I have worked in the Radiology department of the hospital where I delivered my son for the last 7 years.  

Jonathan was born at 30 weeks. He was 2 lbs 13 oz. and 14 inches. At his lowest weight 2 lbs and 4 oz. Four days before JD was born I was at my regular doctor's appointment. I had a UTI and was placed on Cephalexin. Two days later I was having lower abdomen pain and some bleeding. I went to labor and delivery. They did a urine culture again, which came back that of course I had an infection. An ultrasound of my kidneys was done to check for kidney stones. I was told the pain was from the UTI. I wasn't having contractions so I was sent home with bed rest. The next day was pretty uneventful. The morning of the day I had delivered was fairly quiet. I was having very slight pain, but not as bad as two days prior. Around 4 that evening the pain started to come a little more consistent. At 4:30 I called my boyfriend and told him I thought maybe he needed to get home. He was out of the house with the kids so I could rest. The pain kept coming and going. Around 5:30 is when it started to get intense. So I got changed and we headed back to labor and delivery. 

Unfortunately no one was around to watch the kids, so he dropped me off thinking I would just call him when they were getting ready to send me home again. The minute I was hooked up to the machines I knew Jonathan was coming. The amount of activity going on around me was crazy. My doctor happened to be out of town that night, so the head of the department (who had just delivered a c-section and hadn't left the hospital yet) was there. She asked a lot of questions about my previous visit to labor and delivery and didn't seem too happy. My friend Teresa came in to do my ultrasound. I was told she saw his eye very far down. Jonathan wasn't due for another 10 weeks my mother, who was going to be in the delivery room with me, was 2 1/2 hours away and because Lauren was trying to find someone to watch the kids he wasn’t there. Teresa asked me if I wanted her to stay. I immediately said yes and was told “Good because you don’t really have a choice. She never left my side the whole time. She was wonderful and my angel through this quick process!! I got to Labor and Delivery at 6 pm. JD was born at 6:38 pm. Lauren got back to the hospital without the kids at 6:45 pm. Needless to say he was shocked to find his son had arrived 10 weeks early. 

At 11:00 that evening the transport arrived to take my son to a hospital with a NICU. At this point I still hadn't seen him. At 11:40 pm they came in with him in the transport incubator so I could see him for the first time. After they left the NICU doctor came in to talk to me. She was in the NICU when they got the call that Jonathan had been born and drove the 30 minutes to come see him. I was called when the transport team arrived at the hospital and again when the nurses had him settle into his new temporary home. 

The next day I was very impatiently awaiting discharge. Finally at noon the doctor came in to see me and we drove the half hour to see our son. JD was breathing room air and I was told by Myrtle (his first nurse) she wasn't going to tell him he was a white boy! :)

Jonathan did have to be put on a nasal cannula. He was breathing room air, but his lungs just were not developed enough and he kept d-stating, heart rate dropping and having bradys. The nasal cannula came out on March 3, two days before he was one month old. The feeding tube came out on March 21, at 6 weeks 2 days. He has a slight heart murmur, so they did an Echo today, I will get those results tomorrow. As of today he was very anemic, however, his body is starting to fight it. They will be drawing his blood again on Monday if he is any lower they will do a blood transfusion, if he is continuing to fight it they will let him do that.

As of tonight JD is at 5 lbs and 8 oz. His heart rate still drops about twice a day when he is eating, but we are hoping he will be home soon. When we picked Jonathan for his name I didn't know the meaning. I just liked it, but he really is my "gift from God"! (I just received an update from Jessica and JD will be discharged and on his way home this week on the 11th. Wonderful news! Go JD!!)


Thank you Jessica so much for sharing a little big of your long NICU journey with us, we know this story will touch the hearts of many people. ~Amber @ Preemie Prints