Parenting...what the NICU road taught me

I am a two-time mommy.  I knew what to expect with the birth of my second child.  What I expected was not what happened.  After six weeks of hospital bedrest, I gave birth to my youngest at 33 weeks.  Everything I "expected" and knew went out the window.

I had diapered a child before.  I learned to diaper a child smaller than the baby dolls I had as a child.  I learned to manuever around the wires to prevent false alarms that still sent a shock thru my being.

I had breastfed a child before.  I learned that preemies born before 34 weeks don't eat on their own.  They lack the suck/swallow reflex and then when you add remembering to breathe in there, it take much longer.  I learned to determine when and if he could handle nursing and for how long so that he may finish a feeding orally as opposed to through a tube in his nose.

I had snuggled a baby before.  I learned the benefits of Kangaroo care.  Each time I would hold my son all of his respiratory and pulmonary functions regulated.  He became one with me.  His temperature controlled, his breathing regular, slow and peaceful.

I had woken in the middle of the night to check if my child was still breathing before.  I learned that I would call nightly when I was pumping (typically 3 am) to see if my child had gained, had breathing spells, etc. since I had left him in the hospital.

I had bathed a child before.  I learned to bathe a child in a bedpan no basin no bigger than a bedpan and still he looked like he was in a kiddie pool.  A process that required two people.

I had a c-section and an extended stay at the hospital, taking my son home after 4 days before.  I learned what it felt like to leave your heart (child) at the hospital and not take him home for another 6 weeks.

I had flowers, visitors, and baby gifts sent to us before.  I learned who was really there for us and could handle this new challenge we were embarking on.  They still visited, sent flowers and gifts and treated this as it should be, a celebration, a little early, but a celebration.

The NICU experience certainly taught me that things are out of your control.  Even when you do everything right, there is no gaurantee.

Baby Duggar: Soapbox topic....

Hmm, when I tried to look up "fine" on dictionary.com, this was the choice that fit the context best:

fine: healthy; well: In spite of his recent illness, he looks fine.

I have to say this entry is inspired by a mom who knows first hand what "fine" lmeans in this exact context. Her beautiful son was born too soon at almost this gestational age of the Duggar girl, Josie. To read what "fine" means to a 26 weeker, click here.

Why do I go here? Because that is what they have described the latest Baby Duggar as. For those of you who do not know, Josie Duggar was born more than three months early. She was due in March. It is December. I know that Gunner certainly was not a 25-weeker. He was a strong 33 weeker. But I also am very aware that he could have been a 28 weeker, which is only 3 weeks older than Josie.

For people who do not know the ramifications of a premature birth, let alone a 25-week premature birth, let me run down a few...

Apneas: In a premature baby, the part of the central nervous system (brain and spinal cord) that controls breathing is not yet mature enough to allow nonstop breathing. This causes large bursts of breath followed by periods of shallow breathing or stopped breathing. The medical term for this is apnea of prematurity, or AOP.

Bradies: (bradycardia) slowing down of your premature baby's heart rate to less than 100 beats a minute, results in blue baby

Infection: Premature babies have no immune system, as antibodies are not passed from mom to the fetus until 34 weeks.

RDS: (respiratory distress syndrome) the infant's immature lungs don't produce enough of an important substance called surfactant. Surfactant allows the inner surface of the lungs to expand properly when the infant makes the change from the womb to breathing air after birth

Retinopathy of Prematurity (ROP), which is abnormal growth of the blood vessels in an infant's eye. About 7% of babies weighing 1,250 grams (2.75 pounds) or less at birth develop ROP, and the resulting damage may range from mild (the need for glasses) to severe (blindness)

Warmth/Temperature: Premature babies lack the body fat necessary to maintain their body temperature, even when swaddled with blankets. Therefore, incubators or radiant warmers are used to keep the babies warm

I think my biggest concern is that this event will sensationalize premature birth, especially if this baby makes it out healthy and thriving (which is of course what anyone hopes, but also notice the word "if". "If" is the proper term given this baby's current condition.) and make it seem that a premature baby is just a small baby. You know my drive to help educate future parents (my students) and anyone who will listen to me about prematurity and how to have healthy babies, so I just wanted to put my two cents out there.

It's official...our walk has been scheduled

Gunner's Team will be recuriting for the Battle Creek Walk on April 17, 2010....save the date!!!

Giving Thanks...Day 7 on prematurity awareness day

Today, I give thanks for time. Time you may ask? Yes, time. How much time, 5 weeks or 31 days exactly.

What is that? That is the amount of time that made a huge difference in my life. My water broke at 28 weeks. 75% of women who experience this go into spontaneous labor 24-48 hours after that. I was in the minority who did not. I know that every day, every hour, every minute and every second that a baby stays in utero towards his due date is precious. I was able to buy 31 days of time. I have talked to many moms of babies born well before my son. I know the struggles they endured and still face today. I am so thankful for time.

What difference does this 31 days make? The March of Dimes had this to say:

What about babies born at 28 to 31 weeks gestation? These babies look quite similar to babies born earlier, although they are larger (usually between 2 and 4 pounds) and even more likely to survive (about 96 percent) (13). Many require treatment with oxygen, surfactant and assistance to help them breathe. Some of these babies can be fed breastmilk or formula through a tube placed through their nose or mouth into the stomach, although others need to be fed intravenously.
Some of these babies can cry. They can move, although their movements may be jerky. A baby born at this time can grasp a person’s finger. These babies can open their eyes, and they begin to stay awake and alert for short periods.

Babies born at 28 to 31 weeks are at risk for the complications discussed above. When complications occur, however, they may not be as severe as in babies born earlier. Babies born with very low birthweight (less than 3 pounds, 4 ounces) remain at risk for serious disabilities.

What about babies born at 32 to 33 weeks gestation? About 98 percent of babies born at this time survive (13). Most weigh between 3 and 5 pounds and appear thinner than full-term babies. Many need supplemental oxygen to help them breathe, although some can breathe on their own. Some can breast- or bottle-feed, but those who have breathing difficulties probably need tube-feeding. Babies born at this time are less likely than babies born earlier to develop serious disabilities caused by premature birth, though they remain at increased risk for learning and behavioral problems.

As you can see, the prognosis drastically improves. Time (in utero) as well as good prenatal care is the only thing that can improve this prognosis. Preemies have a ton of conditions that make them more vulnerable. Here are a couple of them explained by the March of Dimes:

What medical complications are common in premature babies? There are a number of complications that are more likely in premature than full-term babies:

Respiratory distress syndrome (RDS): About 23,000 babies a year (most of whom were born before the 34th week of pregnancy) suffer from this breathing problem (11). Babies with RDS lack a protein called surfactant that keeps small air sacs in the lungs from collapsing.
Treatment with surfactant helps affected babies breathe more easily. Since treatment with surfactant was introduced in 1990, deaths from RDS have been reduced by about half (12).
A provider may suspect a baby has RDS if she is struggling to breathe. A lung X-ray and blood tests often confirm the diagnosis.

Along with surfactant treatment, babies with RDS may need additional oxygen and mechanical breathing assistance to keep their lungs expanded. They may need the support of a ventilator or they may receive treatment called continuous positive airway pressure (CPAP). CPAP delivers pressurized air to the baby’s lungs through small tubes in the baby’s nose or through a tube that has been inserted into his windpipe. CPAP helps a baby breathe, but it does not breathe for him. The sickest babies may need the help of a ventilator to breathe for them while their lungs mature.

Apnea: Premature babies sometimes stop breathing for 20 seconds or more. This interruption in breathing is called apnea, and it may be accompanied by a slow heart rate. Premature babies are constantly monitored for apnea. If the baby stops breathing, a nurse stimulates the baby to start breathing by patting him or touching the soles of his feet.

Intraventricular hemorrhage (IVH): Bleeding in the brain occurs in some premature babies. Those born before about 32 weeks of pregnancy are at highest risk. The bleeds usually occur in the first 3 days of life and generally are diagnosed with an ultrasound.
Most brain bleeds are mild and resolve themselves with no or few lasting problems. More severe bleeds can affect the substance of the brain or cause the fluid-filled structures (ventricles) in the brain to expand rapidly. These severe bleeds can cause pressure on the brain that can lead to brain damage (such as cerebral palsy and learning and behavioral problems). When fluid persists in the ventricles, neurosurgeons may insert a tube into the brain to drain the fluid and reduce the risk of brain damage.

Patent ductus arteriosus (PDA): PDA is a heart problem that is common in premature babies. Before birth, a large artery called the ductus arteriosus lets blood bypass the lungs because the fetus gets its oxygen through the placenta. The ductus arteriosus normally closes soon after birth so that blood can travel to the lungs and pick up oxygen.

When the ductus arteriosus does not close properly, it can lead to heart failure. PDA can be diagnosed with a specialized form of ultrasound (echocardiography) or other imaging tests. Babies with PDA are treated with a drug that helps close the ductus arteriosus, although surgery may be necessary if the drug does not work.

Necrotizing enterocolitis (NEC): Some premature babies develop this potentially dangerous intestinal problem 2 to 3 weeks after birth. It can lead to feeding difficulties, abdominal swelling and other complications. NEC can be diagnosed with blood tests and imaging tests, such as X-rays. Affected babies are treated with antibiotics and fed intravenously (through a vein) while the intestine heals. In some cases, surgery is necessary to remove damaged sections of the intestine.

Retinopathy of prematurity (ROP): ROP is an abnormal growth of blood vessels in the eye that can lead to vision loss. It occurs mainly in babies born before 32 weeks of pregnancy. ROP is diagnosed during an examination by an ophthalmologist (eye doctor) several weeks after birth.
Most cases are mild and heal themselves with little or no vision loss. In more severe cases, the ophthalmologist may treat the abnormal vessels with a laser or with cryotherapy (freezing) to protect the retina and preserve vision.

Jaundice: Premature babies are more likely than full-term babies to develop jaundice because their livers are too immature to remove a waste product called bilirubin from the blood. Babies with jaundice have a yellowish color to their skin and eyes. Jaundice often is mild and usually is not harmful. However, if the bilirubin level gets too high, it can cause brain damage.
Blood tests show when bilirubin levels are too high, so providers can treat the baby with special lights (phototherapy) that help the body eliminate bilirubin, thus preventing brain damage. Occasionally, if bilirubin levels rise very high, a baby may need a special type of blood transfusion.

Anemia: Premature infants often are anemic, which means they do not have enough red blood cells. Normally, the baby stores iron during the later months of pregnancy and uses it late in pregnancy and after birth to make red blood cells. Infants born too soon may not have had enough time to store iron.

Babies with anemia tend to develop feeding problems and grow more slowly. Anemia also can worsen any heart or breathing problems. Anemic infants may be treated with dietary iron supplements (drugs that increase red blood cell production), or they may require blood transfusion.

Chronic lung disease (also called bronchopulmonary dysplasia or BPD): Chronic lung disease most commonly affects premature infants who require ongoing treatment with supplemental oxygen. The risk of BPD is increased in babies who still need oxygen when they reach 36 weeks after conception (weeks of pregnancy plus weeks after birth adding up to 36 or more weeks). These babies develop fluid in the lungs, scarring and lung damage, which can be seen on an X-ray.

Affected babies are treated with oxygen and medications that make breathing easier. Sometimes they require support from a ventilator and are weaned slowly from the device. Their lungs usually improve over the first 2 years of life. However, many children with BPD develop chronic lung disease resembling asthma.

Infections: Premature babies have immature immune systems that are inefficient at fighting off bacteria, viruses and other organisms that can cause infection. Serious infections commonly seen in premature babies include pneumonia (lung infection), sepsis (blood infection) and meningitis (infection of the membranes surrounding the brain and spinal cord). Babies can contract these infections at birth from their mother, or they may become infected after birth. Infections are treated with antibiotics or antiviral drugs.

I am thankful that I was a little older and maybe wiser when this happened. So again, time was on my side. I was given premission to sit in a chair, lay on my back, take wheelchair rides, all of which I decided to forego, as it was best for my baby to be still and calm on my left side. Gunner was extremely lucky to have an extra five weeks or 31 days in-utero, it makes the difference in our lives everyday. So today, on prematurity awareness day, I give thanks for time.

Prematurity Awareness Topic: NICU Feedings

...Fight for Preemies Nov 17th

Full term babies can breast or bottle feed easily within minutes of birth. Preterm babies cannot. NICU feeding is different than feeding a full term baby, yet another complication of prematurity. Most NICU babies get their first feedings thru a tube in their mouth or nose. Not the bonding moment most moms dream of when they picture feeding their newborn the first time.

This is a topic that is near and dear to my heart for two reasons:

I had a sweet baby boy, born 7 weeks too early and a lot the information in this great article of this applies to him and the path he was on only a few months ago.

I am extremely proud to be a human milk donor to our local NICU, so not only my son has benefitted from the gift of breast milk, but other babies whose mom's choose not to or cannot breastfeed as well. I have donated over 1600 oz to date, that in gallons is roughly 12. Considering when my son was released from the NICU he was only taking about 2 1/2 oz. that amount will feed a ton of babies!

The Boston's Children's Hospital explained it quite well on their page:

Nutrition for babies in the NICU:

Feeding babies in the NICU is quite different from feeding healthy babies. When babies are sick or premature, they are often not well enough to breastfeed or take a bottle. Premature babies may not be able to suck effectively, or their gastrointestinal tracts may not be mature enough to digest feedings. Babies who are medically unstable are often unable to take regular feedings. Babies with umbilical catheters and those on mechanical ventilators may not be able to be fed because of the risk of aspiration (breathing food into the lungs).

Intravenous (IV) Fluids and Parenteral Nutrition

Many babies in the NICU receive essential fluids and electrolytes through a tube in a vein called intravenus (IV) fluids. Some babies may need a special preparation called parenteral nutrition, which contains nutrients they need until they are able to take milk feedings.
The contents of IV fluids and perenteral nutrition are carefully calculated for each baby. Calories, protein, fats, and electrolytes including sodium, potassium, chloride, magnesium, and calcium are all important components. Babies need calories, protein, and fats for adequate growth and development. Fluids, electrolytes, and vitamins are necessary for functioning of body systems.

Blood tests help determine how much of each component a baby needs and the amount of each nutrient can be increased or decreased accordingly. Daily weights and keeping track of a baby's urine output also help monitor fluid needs.

Sick babies may not be strong enough to suck effectively. Premature babies may not be physically mature enough to coordinate sucking, swallowing, and breathing, or they may be too weak to suck for long periods of time. Special pacifiers designed for premature babies are sometimes used to teach them how to suck properly before they begin to breastfeed or bottle feed.

A mother's breast milk is the preferred milk for all babies, even the most premature babies. Breast milk contains all the nutrients needed for growth and development. Although commercial milk formulas are designed to be close to breast milk, most are based on cow's milk. The fats in breast milk are more easily digested. Formula is digested more slowly than breast milk and may not be as well tolerated. In addition, breast milk contains antibodies from the mother to help protect babies from infection, something commercial formulas do not have. This protection is especially important when babies are sick or premature and may have higher chances of developing an infection.

Premature babies, especially those younger than 32 to 34 weeks gestation, often cannot be fed from the breast or bottle. Gavage or tube feedings may be needed until the baby learns to suck effectively. For gavage feedings, a small flexible tube is placed into a baby's nostril or mouth and passed down into the stomach. The tube is sometimes removed, but may be left in place if feedings are frequent.

As you can see, Gunner had feeding tubes in two different locations. They started in his mouth and moved to the nostril when he became more interested in breast feeding. He then graduated to bottle feeds. None of this was in the plans, but prematurity changed all that!

How lucky we actually were...

So I have mentioned many times how lucky we were to have Gunner keep baking as long as he did. In honor of Prematurity Awareness Month I did some research to see how lucky we actually were. The reason Gunner was born early was due to preterm premature rupture of membranes (pPROM)...we beat the odds as you can see below, by making it for over a month after my water breaking so early (28 weeks). PROM is the single most common diagnosis leading to admission of the newborn to intensive care nursing.

Here are some stats:

• 1/3 of preterm births are due to preterm premature rupture of the membranes (PPROM).
• About 75% of all women with PPROM will deliver within 1 week, and nearly all will deliver preterm.
• Major neonatal infections occur in about 5% of all cases of preterm PROM, and in 15 - 20% of those with chorioamnionitis. .
• Only about 20% PProms will prolong pregnancy duration up to 1 month.

So as you can see, I was in the minority to maintain the pregnancy without infection and without spontaneous onset of labor, and with a perfectly formed and healthy baby boy to show for it!

Stay tuned for the birth story...

November 17th...Fight for Preemies!

Every year, 20 million babies are born too soon, too small and very sick ― half a million of them in the United States. November 17 is when we fight.

Do you know a baby that was born too soon, too small, unable to suck, unable to breathe on his own? Premature birth is a health crisis that jeopardizes the lives and health of nearly half-million babies each year. It is the #1 killer of newborns and can lead to lifelong disabilities. Worse: the number has increased 31 percent since 1981. It can happen without warning and for no known reason. Until we have more answers, anyone’s baby, could be born too soon.

Medical advances give even the tiniest babies a chance of survival, yet for many babies premature birth is still a life or death condition. It’s the #1 cause of death during the first month of life. And babies who survive face serious health challenges and risk lifelong disabilities.

The rate of premature birth has never been higher. In half the cases, we simply don’t understand what went wrong. We need to fight for answers. And, ultimately, preventions.

November 17 is dedicated to raising awareness of the crisis of premature birth. The March of Dimes invites bloggers like you to get involved.

• Learn about premature birth at marchofdimes.com/fightforpreemies

• Put a badge on your blog during November, Prematurity Awareness Month®

• On November 17, blog for a baby you love and to help others

We need to fight ― because babies shouldn’t have to.

November 17th: Calling all Bloggers--Fight For Preemies

Did you know?

Preterm birth is a serious health problem that costs the United States more than $26 billion annually. It is the leading cause of newborn death and babies who survive an early birth often face the risk of lifelong health challenges, such as breathing problems, mental retardation and others. Even babies born just a few weeks too soon (34-36 weeks gestation, also known as late preterm) have higher rates of death and disability than full-term babies.

I personally can attest to this...the hospital bills I have seen this year..wow

Bills or Blog???

The answer to that question should be obvioius....well, I am actually multitasking, calling on a bill for Gunner and blogging. I am only able to do this while he is awake because he is soooo engorssed in a new old toy I just brought up from the basement. I will attach photo evidence for your viewing pleasure!

Back to the original thought..why is it that I have to call and question each and every bill that isn't covered? Do they not pay people to do this? I'm not getting paid and I could use the money..

I look at the history of my blogging and I see that I had a lot more time when Gunner was in the hospital and now that he is sleeping or playing more, I am more able to find time...but I am predicting that very soon I will be MIA again unless the stars align and it is quiet time all over the house at the same time. Gunner is getting to be quite the mover and shaker..

Have I mentioned that November is Prematurity Awareness Month yet?? lol, I know silly question...I know the answer to that!

Things happen for a reason

well, it has been said many a time that things happen for a reason. I would like to think that I was chosen to have a preemie because something good would come of it. I have this undeniable urge to "give back" to all that made it possible for us to have what has become the most amazing little boy in our life, equal only of course to his brother!

I want to do March of Dimes fundraisers, raise awareness of prematurity, do nice things for our nurses, and provide support to other NICU parents. So be prepared, I may enlist you in my quest!

November is Prematurity Awareness Month

I have to say we were lucky....so lucky. There are tons of babies who are not. If you click on the link you can donate in Gunner's name if you feel so obliged. Not forcing anyone...however, in April, when I do the local March of Dimes Walk, there will be some force :)