Monday, November 17, 2014

Today...we wear purple!

 



My girls, Kenny and I all are wearing purple today...Morgan has purple socks on! This is for World Prematurity Awareness Day!

World Prematurity Awareness Day


I am the mother of a premature baby..well...8 babies (no, not all at the same time).

 I did not drink, I did not smoke, I did not do drugs, I took my vitamins and went to all my doctors appts. I did everything right and still had my twin boys at 23 weeks. Premature birth can happen to anyone at any time in their life. It can happen to you, your child, your grandchild, your best friend. It does not discriminate in who it chooses or why.

This month is all about Prematurity Awareness and today is World Prematurity Awareness Day...
I could write a book about what this is all about...or a blog ;)

Prematurity is all about being cheated out of a full 40 weeks of pregnancy...you know, the part of the pregnancy where women start to really complain about...yeah...thats the part prematurity skips...I always wanted to be that pregnant woman complaining of her swollen cankles, her sore back, hips, etc...but I never had the chance.

Most of my babies came at 34 weeks...the longest I ever got to was 36 weeks...still early, but not as early as my twins whom I was cheated out of just about half my pregnancy. Pretty much the whole third trimester (with a little bit of second trimester)...17 weeks early. I missed out on everything except to feel the two of them moving around in me. Prematurity robs a mommy to be of her special time and its a very hard thing to take in.

Prematurity is about having your baby early, not being able to hold your baby right away...sometimes even for weeks.

...Its about being thrown into the whole NICU experience, be it either for feeding and heating issues or more, much more serious issues that mean life or death.

...Its about leaving the hospital without your baby...worried, scared and sad.

...Its about putting your baby's life in the care of the team of doctors and nurses in the NICU.

...Its about praying to God you don't get THAT call from the hospital to come right away because...well...they don't want to worry you...they'll tell you when you get there. Worry, pray, cry, worry, pray, cry....

...Its about finally being able to take your baby home, but not without infant CPR classes and car seat checks to make sure your little one can handle sitting in a car seat without change in oxygen sats or heart rate drops.

...Its all about learning how to use home health care equipment...apnea monitors, pulse ox monitors....when the alarms go off...what do you do? Worry, pray, check to make sure its nothing...then, go cry into your pillow.

Its about medications, doctor visits, therapies, feeding issues, hospital stays, RSV, being on house arrest from October to April for fear of your preemie getting sick.

Its about delays in development, lung issues that could last a lifetime, brain issues and injuries, feeding issues which some may need a feeding tube, hearing loss in some, eye problems in others.

Its about looking to the future but not being able to because of the fear that grips you at the thought of it.

And finally...

Its about many times, not bringing home that baby that you carried, had big dreams for, prayed over, cried over...loved.


When you are the parent of a premature baby your whole world will stop. You will be told your baby might not survive and if it does, it will have lifelong health issues. You may be told he/she may never sit up, crawl, walk, see or hear. You will cry yourself to sleep at night and pray your baby lives another day. You will ask God to take you instead of your tiny child. You will fall to your knees every time your tiny baby stops breathing. You will stop sleeping and every time your phone rings your heart will drop to the floor because you fear the worse.


Having Kenny and Nick 17 weeks early has changed me as a person and Mother. I will never take the health of my children for granted again. Please remember all of the babies who didn't make it and all of the ones who have fought so hard to survive.


NOVEMBER 17th is National Prematurity Awareness day. Please wear purple to bring awareness to this issue so someone you love doesn't go home from the hospital empty handed.


Here are some facts and terms I would like to share:


Premature infant
A premature infant is a baby born before 37 weeks gestation.
Causes
At birth, a baby is classified as one of the following:
Premature (less than 37 weeks gestation)
Full term (37 to 42 weeks gestation)
Post term (born after 42 weeks gestation)
If a woman goes into labor before 37 weeks, it is called preterm labor.
Often, the cause of preterm labor is unknown.
Multiple pregnancy (twins, triplets, etc.) makes up about 15% of all premature births.
Health conditions and events in the mother may contribute to preterm labor.
Examples are:
Diabetes
Heart disease
Infection (such as a urinary tract infection or infection of the amniotic membrane)
Kidney disease
Different pregnancy-related problems increase the risk of preterm labor:
An "insufficient" or weakened cervix, also called cervical incompetence
Birth defects of the uterus (which is what I have)
History of preterm delivery
Poor nutrition right before or during pregnancy
Preeclampsia -- the development of high blood pressure and protein in the urine after the 20th week of pregnancy
Premature rupture of the membranes (placenta previa)
Other factors that make preterm labor and a premature delivery more likely include:
African-American ethnicity (not related to socioeconomic status)
Age (younger than 16 or older than 35)
Lack of prenatal care
Low socioeconomic status
Use of tobacco, cocaine, or amphetamines

A premature infant's organs are not fully developed.
The infant needs special care in a nursery until the organ systems have developed enough to sustain life without medical support. This may take weeks to months.
A premature infant will have a lower birth weight than a full-term infant. Common physical signs of prematurity include:
Body hair (lanugo)
Abnormal breathing patterns (shallow, irregular pauses in breathing called apnea)
Problems breathing due to immature lungs (neonatal respiratory distress syndrome) or pneumonia
Lower muscle tone and less activity than full-term infants
Problems feeding due to difficulty sucking or coordinating swallowing and breathing
Less body fat
Soft, flexible ear cartilage
Thin, smooth, shiny skin, which is often transparent (can see veins under skin)
Not all premature babies will have these characteristics.

If the infant has breathing problems:
A tube may be placed into the windpipe (trachea). A machine called a ventilator will help the baby breathe.
Some babies whose breathing problems are less severe receive continuous positive airway pressure (CPAP) with small tubes in the nose rather than the trachea. Or they may receive only extra oxygen.
Oxygen may be given by ventilator, CPAP, nasal prongs, or an oxygen hood over the baby's head.
Nursery care is needed until the infant is able to breathe without extra support, feed by mouth, and maintain body temperature and a stable or increasing body weight. In very small infants, other problems may complicate treatment and a longer hospital stay may be needed.

Possible complications that may occur while in the hospital include:
Anemia
Bleeding into the brain (intraventricular hemorrhage of the newborn) or damage to the brain's white matter (periventricular leukomalacia)
Infection or neonatal sepsis
Low blood sugar (hypoglycemia)
Neonatal respiratory distress syndrome, extra air in the tissue of the lungs (pulmonary interstitial emphysema), bleeding in the lungs (pulmonary hemorrhage)...this is what took our Nick to Heaven.

Patent ducturs arteriosus this is what Kenny had to have surgery on when he was 7 days old.
Severe intestinal inflammation (necrotizing enterocolitis)

Possible long-time complications include:
Brain injuries from bleeds
Delayed growth and development
Mental or physical disability or delay
Retinopathy of prematurity, vision loss, or blindness
Feeding issues/gastric issues
Hearing loss

The list goes on and on with long-term complications. Every preemie is different. With ours, the list seems never ending...even 7 years down the line, we hold our breaths at each sickness or doctor visit.
But we also get to experience small miracles daily with how far our 1 pound 7 ounce baby boy has grown.

Prevention
One of the most important steps to preventing prematurity is to receive prenatal care as early as possible in the pregnancy, and to continue such care until the baby is born. Statistics clearly show that early and good prenatal care reduces the chance of premature birth.
Premature labor can sometimes be treated or delayed by a medication that blocks uterine contractions. Many times, however, attempts to delay premature labor are not successful.
Betamethasone (a steroid medication) given to mothers in premature labor can reduce the severity of some of the prematurity complications on the baby. I was lucky enough to get steroid shot for most of my kids.

Most of this won't mean anything to anyone, but if I could get through to just that one new mom who is scared to death...having just been thrown into the whole Preemie experience, I've accomplished my goal. 

So Today, wear purple proud and help raise awareness to prematurity!

Friday, November 14, 2014

Short little exciting update!

Kenny just came over to me and did the sign for help. I asked him if he needs help and he shook his head yes...grabbed my hand and pulled me into the room and pointed to his box of cars that he wanted lifted!!! HE ACTUALLY COMMUNICATED WITH ME!!! This is HUGE! Every day I struggle. Every day...every minute is a struggle with guessing what Kenny wants/needs. He gets frustrated, I get frustrated...it's like trying to know what Helen Keller...seriously! I am beyond happy and grateful! I feel like speech therapy and this new school is really paying off! This added some happiness to my life today!