Sam came into the world at 30 weeks—10 weeks early and weighing in at 3lbs 5oz. Although he was not in real danger, he required 8-10 weeks in the NICU before he could go home. The Doctors said he’d need to gain significant weight and continue developing while in the NICU. He was given a feeding tube and was put on a 2-hour feeding schedule. Everyone on the staff said, “Not to worry”. They assured us that he would do fine and before we knew it he’d be coming home with us. For the next 7 weeks my wife Petrina went to the hospital at least twice a day, sometimes three times. I worked, took care of the dog and cat, maintained the house, and visited my new son, Sam, as much as I could. I offered to relieve my wife on the weekends so she could get some rest, but she wasn’t having any of that. So we spent the weekends with Sam in the NICU, together.

Fast forward 7 weeks. I’m holding Sam late one evening while he’s being fed and the Doctor, responsible for Sam’s care, swings by for a check-in. She barely acknowledges me, looks at his chart, pokes at him for a few seconds and declares it’ll be at least another 2 weeks before we can even start to think about taking him home. “Thank God Petrina isn’t here” I thought. “She’d flipp’n snap!” For the few weeks leading up to this encounter we had been working hard to get Sam to breastfeed or take a bottle. He kept refusing and we were getting frustrated. He was just over 6lbs now and we knew he was strong enough to at least start feeding, but he just wasn’t interested. I went home and knew Petrina wouldn’t be happy with what the Doctor said, but what happened the next day was monumental.

The next morning, after I reported what the Doctor had said about Sam needing at least another two weeks before coming home, Petrina went into the NICU and took charge! We knew Sam wasn’t taking to the breast or bottle because he simply wasn’t hungry. He was getting fed every two hours via the feeding tube and didn’t need to eat anything else. We tried to discuss this previously with the Charge Nurse, but she wasn’t buying our hypothesis. Anyway, when Petrina arrived at the NICU that morning she got the staff together and demanded the feeding tube be removed. They hesitated and no one seemed to be able to make a decision, but Petrina reminded them of the first thing the staff told us after Sam was born—you know your baby best. After an hour or so of negotiation and a few heated moments, they agreed to take the feeding tube out. After all, we can always put it back in, Petrina reminded the staff. The feeding tube came out and we waited for the next scheduled feeding time to see if he’d take to the nipple. At the next feeding Sam didn’t completely take to the nipple, but he made more progress than he ever had before. Over the next few days Sam fed from the breast or the bottle more and more at each feeding. Finally, 4 days after the feeding tube was removed the Doctors and staff said he could go home. So, instead of another 2 weeks in the NICU, it was just 6 days.

I’m happy to report Sam is now almost 14 months old, happy, healthy, and over 20 lbs. We knew in our hearts that he was ready to come home and we asserted ourselves because we know our baby best. Take charge of your child’s care in the NICU and be their advocate! You’ll know what’s best for your baby, so don’t be afraid to fight for what you feel is right!

The above guest post was written by Steve Root, Sr. Affiliate Marketing Manager for Ancestry.com.

My sister is a mother of a girl who was born prematurely. I guess my sister is what you might call a preemie parent. I’m pleased to say that the little girl is growing normally and she is a healthy and happy baby, but the experience that my sister and her husband shared is one shared by many preemie parents. I’d like to tell of their experience with the hope that it will help future preemie parents.

The Parental Impact of Premature Birth

When you realized that your baby had decided to enter your world way ahead of schedule your initial feeling was concern, which quickly changed into fear and panic. The final month of pregnancy, even under normal conditions, is fraught with anxiety for both parents, but especially the mother. As a father, my brother-in-law was busy with work and not thinking about the baby 24/7. My sister, on the other hand, was becoming a mother, and worried about every cramp or kick.

The birth went quickly. The shock of seeing their girl, small enough to fit in the palm of a hand and looking very frail, removed any joy from the experience, replacing it instead with conflicting emotions of anger about their circumstance and worry over their daughters future health or worse, her survival.

There was jealousy as well. It sounds silly now, but at the time my sister was envious of those new parents who were joyful as family and friends came to visit the newborn while her and her husband, and concerned family members, were milling about the intensive care nursery hoping for the best and expecting the worst. It sounds almost normal to say “our baby was born premature” as though it were a small kink in the general plan. The fact was that the baby was very sick and struggling to survive.

It took three months in the hospital before the crisis had passed and their daughter could come home. She was small, but had survived and was healthy. She needed special treatment for a while, and frequent trips to the outpatient clinic, but she was progressing. Friends and relatives did come and visit them with well wishes and gifts for the girl, but it was not the joyful experience that new parents share with friends. The visits were more like sick-room visits filled with concerned and awkward conversations.

My sister and her husband, while very happy about their daughter’s progress, felt cheated whenever they saw other parents in the neighborhood pushing their sit and stand stroller down the sidewalk. In time, their daughter’s growth caught up with her age, and her development schedule became that of a normal full term baby. The physical, psychological, and emotional crisis was over, and my sister and her husband became a normal young family with a healthy new baby.

Comforting the Preemie Parent

The little girl is now two years old, well and healthy. Only those who knew them during their period of crisis would even suspect that she was at one time a preemie at risk. My sister can’t, however, forget her feelings during those days of crisis. It has enhanced her appreciation for the miracle of her daughter, and given her a vivid understanding of how other parents with preemies feel, and how well-meaning people treat them. I’m reminded of some of the things said to my sister during the crisis period. If you have friends that are recent preemie parents, I hope that you’ll think about the following statements before offering advice or comfort to them.

Never quote survival statistics to a preemie parent. A well-meaning friend of my sister told her that “Preemies are born all the time and most of them grow up just fine”. That must have sounded supportive and comforting to her friend, but my sister’s thoughts were “…and what about the rest?”

Another friend, who visited my sister while the baby was still in intensive care said, “At least, while the baby is in the hospital, you’ll get a chance to rest here at home”. This seems to make sense but the end of that sentence should have been, “…you’ll get a chance to stay at home and worry yourself sick”.

When the baby is home and making developmental progress toward normalcy, which does take time, don’t comment on the child’s delayed development. Comments like, “She hasn’t started crawling yet?” and “Mary’s daughter was walking at ten months,” really don’t help. Try something more like, “She looks well and healthy. I’m so happy for you”. Parents of preemies have enough worry roaming around in their heads. They don’t need comparisons or folklore advice. Offer positive comments only.

Managing the Hospital Stay

If you are new parents of a premature child, don’t let events control you. While your child is in the neonatal intensive care unit of the hospital, become part of the medical team. Get a clear description from the neonatologist about the plan for caring for your child, and how you can be involved. Request reading materials that can help you to provide the care needed when the baby comes home. Demand maximum physical access to the child when possible. Once the baby is released from the hospital, be pro-active with your pediatrician. Set up a regular schedule of visits. Relax a bit. The worst is over. It’s time to enjoy your new baby.

The guest post is from Amy Brown, an editor of Livesnet created to help parents find the right baby products for kids and give them advice on everything from pregnancy. Read her hot article on booster seats for children.

Meet William & Aaron Conley, born 6/27/11 at 25 weeks, 5 days,
weighing just under 2 lbs each. They spent 93 days in the NICU and
battled almost every obstacle possible for preemies, but are now
thriving at home. Read their birth story.

Have your own preemie twins story? Share your story with us!

Has anyone else experienced menopause just after having preemie twins? Or is just me? I had to have a peripartum hysterectomy after the birth of my preemie twins (a boy and a girl born C-Section at 28 weeks gestational age) due to a postpartum hemorrhage (PPH). The doctor told me that I had to have the operation or I would have died.

According to a survey by UKOSS, the UK Obstetric Surveillance System, the incidence of peripartum hysterectomy is 4 in 10,000 births (about 0.04% or 250 women a year in the UK). There is a strong association between hysterectomy and having a caesarean birth, and also between hysterectomy and multiple births. Having had a previous caesarean birth can increase the risk by 10 to 20 fold. The most common reason for having a hysterectomy following birth is because of placental problems such as placenta praevia and placenta accreta. (Source: ThirdStageofLabour.org).

So now, here I am only 27, and experiencing all the glorious menopause symptoms such as hot flashes, night sweats and extreme mood swings. Add that to my post-partum depression and having twin babies in the NICU, and I’m one depressed mama! I think the worst part is knowing that I won’t be able to have any more children as I’ve always wanted a big family.

Luckily, there is the internet providing me with a vast full of information and support that helps me know I am not alone. I frequent forums and websites, such as GotMenopause routinely so I don’t feel so alone. I hate being so young, yet feeling so old (my mother hasn’t even went through menopause yet).

So I would love to hear from other moms that had to have a hysterectomy when they didn’t want one, especially from those that had to have one right after the birth of their baby (or babies). Leave a comment so we can sympathize! ~ Whitney

You find yourself in the NICU (Neonatal Intensive Care Unit); your baby has come into the world prematurely and suddenly your “perfect” pregnancy takes on an entirely new definition: that of being the parent of a premature baby. After searching for a reason as to “why” this has happened by absorbing every book, article and website you can find on the topic, you quickly come to the realization that it’s not about the “why”…it’s about the “how” – how you’re going to deal with this unexpected experience…how you’re going to push past the feelings of anxiety and fear and bring yourself to a place of strength for you and your baby.

When I had my twin preemies at just 25 weeks, they weighed 1 pound 12 ounces each. When the fog cleared, I realized that I had to develop a way of coping with my new “normal”. The first thing I did was create a vision of who I needed to become to give my babies what they needed to survive and thrive. Below are five simple principles of P.E.A.C.E. I developed that helped me. They can guide you through the discovery process of going from discharging the NICU to admit a new you…both now and in the years to come.
The “P” in P.E.A.C.E. stands for Power: The power of intention is greater than any current reality.
Intention is defined as “an act or instance of determining mentally upon some action or result.” Simply put, it’s a tool to create whatever you want in harnessing an emotional advantage over the NICU and all that it brings. Make your intention clear and focus on it.

The “E” in P.E.A.C.E. stands for Energy: Everything is energy.
Everything is energy and energy is every thing, including your thoughts, feelings, words and actions. It doesn’t matter what your circumstances are at the present moment. Think positively, expect only favorable results and situations, and circumstances will change accordingly. It may take some time for the changes to take place, but eventually they do. If you feel any inner resistance when replacing negative thoughts with positive ones, do not give up, but keep looking only at the beneficial, good and happy thoughts in your mind.

The “A” in P.E.A.C.E. stands for All: All things will move into balance eventually.
You may look at your baby, attached to wires and monitors, and feel as though nothing in your life will ever be the same again. But with positive thoughts and positive energy, you’ll be able to find peace in the knowledge that all things will balance out in time.

The “C” in P.E.A.C.E. stands for Caring: Caring for you precedes caring for anyone else.
Caring for your premature baby is much like flying on an airplane; you’re told that if there’s a problem and a mask drops down, you need to put yours on first so you can help others. The same applies now; you’ve got to maintain physical, mental, emotional and spiritual health in order to be strong for your baby and those around you. You’ve got to nurture yourself if you want to be able to nurture your baby.

The “E” in P.E.A.C.E. stands for Everything: Everything is exactly as the Universe intended it to be.
As you embark on this journey as the parent of premature baby, remain open to opportunities for your own personal growth. Good things will happen and bad things will happen. Choose to focus on the good – those things you want to bring into your life – and the Universe will align to make them happen. Accept your situation, knowing everything is exactly as it was intended to be.

These principles are the foundation for being the best you can be for you, and ultimately, your premature baby; use them to help you transform the NICU to a new you. Take comfort in knowing that everything happens for a reason…even this.

Tami C. Gaines, the mother of four children (including premature twins born at just 25 weeks), has achieved national recognition as an advocate and spokesperson for parents of premature babies. With an M.B.A. from Columbia University and twenty-five years as an entrepreneur and executive, Tami could not have foreseen the events that would take her from the board room to the hospital room. Tami’s book, Preemie Parents: 26 Ways to Grow With Your Premature Baby helps other parents of premature babies learn to cope — as she has — by opening their hearts to learning life’s lessons. For more information and inspiration, visit www.PreemieParents.com .

I love stumbling upon other parents’ personal websites about their twins and/or preemie babies! For instance, yesterday I found Twin Mama Rama – Join the Adventures of a Twin Mom and her Twin Boys!

In this post (with the photo of her boys above), the author asks her readers whether or not they think her twins boys are identical or fraternal. With the history of mom being a twin herself and the boys in separate sacs, I’d go with fraternal, but looking at the picture, they definitely look like mirror-identical twins! What’s your take? I’m anxious for her to post the DNA results!

Do you know of a “preemie twins” worthy website we should check out? Contact us!

With an accomplished background as a marketing and business strategist, Tami Gaines has proven how individuals and business owners can achieve success from the inside out. She has been widely recognized as an expert and visionary among national media like The Wall Street Journal and has built an impressive client list that has included The Marriott, Goldman Sachs, Bank of America, Consumer Reports, Unilever and The Commonwealth of Virginia. With an M.B.A. from Columbia University and 25 years as an entrepreneur and executive, Tami could not have foreseen the events that would take her from the board room to the hospital room.

Tami believes that our will is a renewable resource and it is by sheer will that she was able to thrive during the five months of her life that she found herself: Unexpectedly pregnant with twins; Suddenly single after nearly 12 years of marriage because of the decision to keep them; Confined to a hospital bed for 5 weeks in an effort to maintain the pregnancy; And then an experienced mother in a new reality, fluctuating between prayer and advocacy for the health of the twins, born at only 25 weeks, weighing just over a pound and a half each. Her daughter spent nearly 4 months in the intensive care unit before coming home. Her son spent 15 months in the intensive care unit and 3 months in a rehabilitation facility before finally coming home in late August 2007, technology-dependent yet self-reliant. The twins join their older sister and brother, 10 and 7 years, respectively, in a home that had to be spiritually gutted and rebuilt to allow space for forgiveness of and gratitude to my former husband for leaving so that we could live from a place of faith and self-love.

Tami has used the lessons of her personal and professional journeys to restore her power and gain wholeness again. Developing an intimate connection with the Universe and then giving that connection a voice through the way she lives is her true devotion. She has expressed her truth in the way she gives context to experiences, takes action, makes decisions, in the people she chooses to surround herself with and the energy that she gives out and lets in. Her legacy will be one that empowers people to live their greatest lives, despite any challenge facing them.

At the encouragement of parents, doctors and hospital administrators, Tami has written Preemie Parents, 26 Little Ways to Grow With Your Premature Baby, to help other parents cope as she has — with heart wide open to learning life’s lessons. Both practical and inspirational, Tami has revolutionized the way people experience prematurity, divorce and other unexpected crises. Tami returns power to those who feel powerless as they go through their challenges by reminding them that “the context that we give our experiences is ultimately our defining story.”

“We never know how much power we have within us until we’ve gone through something, that before, we could never conceive of getting through.” — Tami Gaines

I thought my “preemie twins” were done giving me death scares. I thought wrong.

Mallory has been sick for over a month now with classic medical symptoms: headache, stomachache, sore throat. She was originally diagnosed with a sinus infection, but antibiotics didn’t help at all. She also said she felt like she was “blacking out” – my interpretation of “blacking out” was getting up really fast and getting that woozy feeling, which made sense since she was weak from being sick.

All medical tests had came back normal; she was negative for strep throat, mono, influenza, CSV, even carbon monoxide poisoning (that freaked me out, so I bought all kinds of testers for the house). She looked extremely pale, but all bloodwork was normal, so she wasn’t anemic. They finally did an MRI which showed “inflammation on the brain” which they wrote off as a nasty virus.

When Tatym, her younger sister, started to have the same headache/stomachache/sore throat symptoms, even both girls having a tender spleen and left ear pain, we figured it really was a contagious virus, and it would just have to run its course.

Tatym only missed a couple days of school, but Mallory had already missed three plus weeks of school. She actually seemed somewhat better last weekend, so when she was bawling that she didn’t want to go to school on Monday, Macy (her twin sister) and I chided her that she couldn’t miss any more days of school! Then during breakfast, her whole body “twitched” and Macy and I gave each other that “what the hell just happened” look.

Here, Mallory was calling those twitching episodes “black outs”. I knew the doctor’s office wouldn’t be open until eight, so I hopped into the shower. In the meantime, Mallory had another episode, causing her to drop her “fake baby” (she is taking a Child Development class and gave her baby a head violation in the process). We dropped the baby off at “daycare” aka school and headed to the doctor’s office.

Mallory had a few more twitches on the way there, and I jokingly asked if I needed to hold her hand to walk to the office. And within a second, Mallory was no longer beside me, but on the cement having full-blown convulsions in a pool of blood. I panicked. I couldn’t stop her or hold her still. No one was around to yell for help. I ran to the doctor’s office to send help.

Luckily a local businessman came to our rescue and used his coat to pad her head from getting any more damage. My daughter was having a massive seizure and there was nothing I could do to help her. But the scariest part was when she stopped convulsing and went limp. She was gray and lifeless, and I seriously thought she was dead.

–that feeling makes me cry every time I think about it, so I need to take a break in continuing writing–

When rescue arrived, I was happy that Mallory finally opened her eyes, but worried when she was in a fog and not responsive to me. My mom drove me to follow the ambulance to the emergency room. More bloodwork and a CT scan were all normal. So what was wrong with her?!

Mallory must have originally landed on the left side of her forehead as she has a huge bump there. The fall broke her prescription eyeglasses cutting her right eye requiring stitches to close the huge gap.

After the neurologist reviewed Mallory’s history and EEG, he diagnosed her with juvenile myoclonic epilepsy (JME), and that combined with the virus that she has been fighting the last few weeks just exacerbated each other. She had all the classic symptoms of JME: febrile seizures as a infant, staring into space as a toddler, muscle spasms the last couple of years (which we were writing off as charlie horses). JME full blown seizures typically begin at ages 13-15. Since Mallory was a preemie and still is developmentally delayed, that makes sense that hers waited until she was 17.

Indications of a full blown seizure coming on are extreme mood swing (she was bawling uncontrollably) and “twitches” which are more likely to occur in the morning. Bingo. The neurologist put her on Keppra XR, sent her home, and said to come back in a month.

After doing research (aka google) and talking with our pastor (whose wife has epilepsy) and some good friends who know A LOT about epilepsy, I made an appointment for Mallory to see Dr. Madhavan who specializes in epilepsy.

A lot of Mallory’s history is starting to make sense to me now. For instance JME affects your short term memory and ability to learn. I had always wondered why Macy excelled above Mallory at everything when Macy was the sicker baby of the two by far. I now have hope that once Mallory is properly treated, we will see a significant improvement!

Thanks to everyone for all the prayers and concerns – your friendships are appreciated more than you know!

My friend’s daughter had “preemie twins” this past weekend – two beautiful, healthy baby girls, born at 33 weeks gestational age weighing a good 4 lbs 8 oz and 5 lbs 1 oz respectively. I will be anxious to see the birth announcement that she sends out!

When my twins were born almost seventeen years ago (gasp! I’m getting old), the birth announcements that we sent out were from a Hallmark store (it was hard to find ones especially made for twins) where we hand-wrote the baby’s information such as birth date, name/s, weight/s and parent’s names.

Nowadays, parents are lucky to be able to create their own announcements digitally with pictures and graphics with websites such as Naptime Productions that bring you unique cards for every occasion, from births to baptisms, baby showers to birthdays, even graduations to weddings.

One thing I wish I would have done that I would now recommend is framing one of your child’s/children’s birth announcements to hang up on the wall in the baby’s room. The card can become a keepsake to treasure as he or she gets older. I do have the cross-stitch samplers I made for my twins still hanging up in the girls’ room and think of them as itty bitty tiny babies often every time I look at it!

The Pampers Love Comes Early Twitter Party is scheduled for this Tuesday night (11/30/10). There are tons of prizes, and the party will centered around Baby Addyson (born at 25 weeks weighing 1 lb. 7 oz.)! So save a few hours on Tuesday night (7-8 pm CST). Make sure to watch the videos here, as the questions will revolve around them (you better grab a tissue). The twitter party will be under hash tag #LoveComesEarly and will last one hour. Come one, come all, no need to RSVP!