Aeden and Noah's Story

     I found out that I was pregnant New Year's Day.  We were surprised and excited and anxious.  Of course, we had to wait several weeks before we actually got to see a doctor, so 28 days later we made our way to the doctor excited to hear our baby's heartbeat for the first time.

      At our first appointment we went in for the sonogram and it was very exciting until the technician said, ,"Oh...wait a minute..."  It got very scary for a few seconds until she identified a second heartbeat.  We were having twins.  Next the technician checked for several other things and was worried that she could not find a septum (the line between the babies indicating that they were in two separate amniotic sacs).  However, she and our doctor assured us that they would probably be able to see it at our next appointment  and scheduled a follow up for one month later.

     At our next appointment, one month later (13 weeks gestation) they were only really concerned with finding the septum.  I was amazed at how my little beans had turned into little people and looked like they were boxing each other.  When the technician excused herself to get the doctor we got worried.  It was kind of like one of those moments in movies when the doctor gets a concerned look on their face and give the parents terrible news.  The doctor came back to the room with the technician and started giving her instructions.  After a few minutes the news came..."We can not find a septum between your babies.  Let's go over to the exam room so we can talk about what this means."

      The details were scary.  Mono-amniotic/Mono-chorionic twins happen in only one in 10,000 twin pregnancies.  There was a 50-60% chance that one or both babies would be still born.  In addition, because they were split from one egg, there was a high chance that one of the babies would be born with some sort of defect ranging from heart, lung, spinal, renal, or brain defect.  It was a lot of scary stuff to hear, but there was still a chance that there was a septum and the ultrasound equipment was just not advanced enough to locate the divide.  We were referred to a perinatal specialist in Shreveport, LA (which was two hours from our home) first in hopes that their advanced equipment would find the septum, and second to give us a physician would could properly care for our very high risk pregnancy if they did not find the septum.

      The following week we made the trek to Shreveport to find out for sure what we were dealing with.  They did not find a septum.  The doctor also gave the ultrasound technician a series of directives, "check the hips, check the stomach, check the back, check the chest, etc." and then finally informed us that he was worried that they were conjoined based on the photos he had been sent.  What?!?  We had no idea that was even a concern.  Immediately following the ultrasound we met with the doctor where he gave us all the gruesome details again.  He also offered a selective termination in which they could terminate one of the babies in order to give the other a better chance of survival.  No Way!  I responded by simply saying, "no...that's actually isn't an option."  He warned us of the tough road ahead.  I would see him in Shreveport monthly, unless something more serious arose, I would see my doctor at home every two weeks.  I would go on bed rest at home at 20 weeks and begin seeing my home doctor every week.  At 24 weeks I would be admitted into the hospital for continuous monitoring and would remain there until the babies were born.

      Then the fun began.  We continued living our lives knowing that one way or the other our lives were going to change.  We both still had the stress of our jobs, preparing and taking bands to contest, in addition to the stress of the pregnancy.  Everything went along without a hitch until our appointment at 20 weeks in Shreveport when they began to check out organs.  The organs looked fine, but they did discover a single umbilical artery in twin a which could be a sign of defects that could not be detected on the ultrasound.  We would just have to wait until they were born to find out.  (This is probably the reason for Aaden's hemi-vertebrae and horseshoe kidney)

      I also began bed rest at home at 20 weeks and so instead of my days being filled with the stress of my job it was filled with the what ifs of my pregnancy.  The only thing that kept me sane was feeling them move and the security of having weekly appointments to be sure they were both okay.

      At 24 weeks I was admitted into the hospital where they monitored the boys twice a day for a few hours.  At first they were still small enough to move around quite a bit so it was very difficult to monitor them effectively so many times the monitoring sessions took quite a long time.  Things went along nicely for two weeks, then one night, right at 26 weeks, the boys began having issues.  Twin A's heart rate was dropping pretty low and staying down for too long so they began to prep me for surgery and gave me the steroid shots to speed along the boys' lung development.  For about a week I stayed hooked up to an IV while they continued to monitor the boys 24 hours a day.  I also began having contractions during this time so they gave me all sorts of drugs to try to keep them at bay.  When I was finally taken off continuous monitoring and allowed restroom privileges again (and allowed to take a real shower!) things seemed better.  I was at 27 weeks and had only 5 weeks left until they would take the boys.  Things seemed fine.  My parents came to visit and my mom was going to stay with me for a couple of weeks.  She just had to make one trip back home for a doctor's appointment and then she would be back for the long haul. Josh was busy doing drama camp in Henderson during this time so the plan was that mom would keep me entertained so that Josh wouldn't have to travel back and forth so much.  Mom left on a Sunday for her appointment (Father's day actually).  The next day I was feeling down so I called Josh to ask if he would come for the night.  He agreed without any argument and I immediately felt better.  He brought me food (it's difficult to live on hospital food) and I enjoyed that before I began an unusually late monitoring (there had been a ton of births that day so I didn't start my first monitoring until late, moving my second monitoring back later).  This turned out to be a blessing in disguise.  About 8pm Twin A went into distress and stayed that way for too long.  The next hour was one of the craziest hours of my life.  People were in and out of my room, nurses, doctors, anesthesiologists, all the while all I can think about is my baby being in distress.  I was finally wheeled (ran really) down to the operating room and within 15 minutes my babies were born and I entered the most stressful time of my life.

 Noah at 28 weeks gestation

Aeden at 28 weeks gestation

      Aaden was born with an APGAR of 0 and had to be revived. His umbilical cord was completely white and the doctors had no idea how long he had not been receiving blood. His 5 minute APGAR was a 3.  Noah was born with an APGAR 3 and his 5 minute APGAR was an 8.  Noah was only on the vent for a few hours, Aaden for a few days.  It was so difficult to see my babies hooked up to so much equipment and not be able to hold or comfort them in any way.  The first week was pretty uneventful until Sunday.  We had just left the hospital for the night and decided to go to Henderson and stay with Josh's parents.  We got a phone call from the NICU before we got there telling us to come back immediately.  We got no other info except to come back.  I have never prayed or cried as hard as I did during the 45 minute drive back to the hospital.  We called once during the trip to get the same info, keep coming.  When we arrived we ran to the NICU and the doctor met us at the door.  Aaden had been in distress.  He had fluid on his lungs and he had almost died.  He was stable, but still considered critical.  I'm still unclear as to what happened, but it had to do with his pic line.  He was returned to the vent and that was how we experienced our first thrill on the roller coaster ride of the NICU.  I still get teary when I think about it.

      Noah had a similar scare later that week, but it did not escalate to the same level that Aaden did because the nurses were much more attentive because it had happened to Aaden.  The boys continued to slowly improve.  They had good days and bad days and our days directly correlated with theirs.  The were in the NICU for three months and came home one week before their due date.  They were still on heart monitors when they came home, but they were home.  Besides some developmental delays they have been great.  They are perfect.

      This is why I march for babies.  If I can help prevent even one family from experiencing the same scary things we went through then it is worth it.  Since the boys were born, just three years ago, they have upgraded the percentage from 50-60% chance of stillbirth to 70-80% chance of survival in mono mono twins with proper care and monitoring.  March of Dimes helped with that and so I will continue to march so that one day maybe mono mono twins will no longer be a high risk pregnancy.

     I never thought I would experience something like this, but it happened to me and it could happen to anyone.  I am thankful for all the people who donated and marched before me, and I will continue to pay it forward as long as I am able.

Preemie Resources

Since you are having momo twins you know your babies will be premature.  It is difficult knowing your babies will be premature, but as one of my doctors said, sometimes it is better to know ahead of time than to be surprised...  We know and can plan for our premature babies while most women with preemies do not know they are having preemies until they have them.

Here are a few resources on premature babies:

Preemies Today:  http://www.preemiestoday.com/

March of Dimes:  http://www.marchofdimes.com/baby/premature_indepth.html

A Primer on Preemies:  http://kidshealth.org/parent/growth/growing/preemies.html?tracking=P_RelatedArticle 

Some good books with info on preemies:

Preemies: The Essential Guide for Parents of Premature Babies, Dana Wechsler Linden (Author), Emma Trenti Paroli (Author), Mia Wechsler Doron (Author)

Your Premature Baby: Everything You Need to Know About Childbirth, Treatment, and Parenting, Frank P. Manginello (Author), Theresa Foy DiGeronimo (Author)

The Preemie Parents' Companion: The Essential Guide to Caring for Your Premature Baby in the Hospital, at Home, and Through the First Years, Susan L. Madden (Author) 

From the March of Dimes, possible medical complications in preemies:

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.