Stephanie

Posted: Dec 18, 2010

When my son Matthew was 6 months old I found out I was pregnant again. My husband Jeff and I were excited and happy that our children were going to be so close in age; maybe they'd be best of friends. We were unsure of my dates so my doctor sent me for an ultrasound. A few weeks later after just getting over the shock of being pregnant again I received an even bigger shock "TWINS". The ultrasound technician did her exam and determined that I was 8 weeks pregnant and that there was no trace of a membrane between the babies she also thought they were Monoamniotic/Monochorionic. That meant absolutely nothing to me at the time. I thought that was the definition of identical twins.

As we waited to meet with the high-risk specialist, I tried getting as much information as I could about Monoamniotic twins. In all the books that I read it was pretty rare. I read about cord entanglement and cord compression and the high possibility of miscarriage in the first 3 months. Needless to say we were very scared and nervous but the one thing that never even crossed our minds was that the babies would be born premature, even if all the statistics were right in front of us, I was determined to carry these babies to term. I had carried my son to 41½ weeks, why not these babies.

At 13 weeks I had another ultrasound to determine for sure that there was not a membrane but they saw one, a very thin one. The Doctors also checked the blood flow in each cord and checked to make sure that TTTS (Twin to Twin Transfusion syndrome) was not present. They pretty much determined that they were girls but they told me not to paint the room pink yet. I was overjoyed, 1 boy and 2 girls what more could I ask for. My pregnancy progressed fine; I didn't feel sick just a lot of heart burn same as in my first pregnancy. And I grew larger and larger.

At 24 weeks I had another ultrasound. I was never told that I needed bed rest and never told to take it easy. How easy could it be with an almost 1 year old keeping me busy? I went by myself thinking it was just going to be a routine one and my husband had been to all the others. But this time things were not fine. They detected TTTS; one twin (baby A) was receiving more of the nutrients and blood than the other. There was a 1-pound difference between the two, quite a large difference for 24 weeks. Baby A the recipient was not doing well at all. They wanted to admit me to hospital but with a soon-to-be 1 year old at home I couldn't. For the next few days I went in daily for ultrasounds. Baby A was still getting larger and Baby B was not moving at all. They did an amnio reduction, they extracted fluid from around the recipient in hopes to reduce pressure around the baby. They extracted 1.5 Litres of fluid. In a normal amniocenthises they only extract a small vial of fluid so you can just imagine how much more this was. It was not very painful just extremely uncomfortable. They figured if they could relieve some of the pressure around Baby A she might have a better chance. This meant having fluid extracted every other day. But the next day Baby A was worse. She had fluid around her brain and lungs, and before she had fluid around her heart and wouldn't survive they decided to do a C-section. The Doctors figured the twins had a better chance to live outside the womb than in.

The girls were born on May 15th, 1997 (2 days before their brother's first birthday) Meghan (Baby A) was born first at 6:54 pm, there was no crying and the room was quiet as they rushed her by me to try and save her life. She weighed 2 pounds 8 ounces, very big but not her true weight as she was carrying 1 pound of extra fluid. Ashley was born 2 minutes later, same reaction from her -- lifeless. She weighed 1 pound 7.5 ounces. Very small and very anemic because of the lack of fluid and nutrients she missed out on.

The doctors asked if they could take pictures of my placenta as they had never come across a monoamniotic birth. I told her, it wasn't so, that they had seen a membrane between the two babies. But when she lifted up the placenta for me to see I saw that the umbilical cords were twisted and knotted. They were wrapped around each other about 20 times. The membrane was there, but only half of it. It had never fully attached itself between the two babies.

The first thought that entered my mind was "Will my babies survive. Would I survive this traumatic experience, would we (my husband and I) survive?" The girls were born at 25½ weeks gestation, very early. What would the outcome be? Would they be disabled? Would they ever cry, talk, run, would I ever be able to hold them, feed them, rock them. Would they be normal"? All of these questions and all these different emotions went through my head, I had never prepared myself for a premature delivery, and I had yet to start my multiple prenatal classes until the next month.

A while later in the recovery room, after they had somewhat stabilized the girls; they wheeled the incubators in for me to see them. My sister had just flown in to help my mother with my son and give whatever support she could. When they showed us the girls, we were shocked. They were so small and frail. They looked very sick. But they were perfect in everyway. Lots of hair, 20 fingers and 20 toes with fingernails and toenails, eyes, noses and perfect little mouths. Everything was formed and in place, except for their ears, the cartilage in the ears was not formed yet. Their skin was very thin and almost translucent, we could see little veins through it. Their hands were the size of my thumb and their heads were the size of a small apple. Then the nurses and Doctors whisked them off and it would be another 16 hours before I saw them again.

The doctor later informed me that the girls were stable but very much critical the next 72 hours would be touch and go. He also explained that babies in their situation only have about a 30% chance of survival. And if they were to survive the chances of them having severe handicaps were more than likely.

I recovered nicely and was walking about the next morning and very anxious to see the girls. I pumped breast milk to be frozen since they were too small to drink but I knew that when they did, that they would be getting the best possible nutrients. I was in the hospital for 4 days in which I sat by the girls' incubator and prayed. We celebrated my sons first birthday in the hospital. And the day I was released was definitely the worst day of my life. I was going home and leaving behind my two very sick but very beautiful girls.

So then began the long stay in the NICU, the ups and downs, the roller coaster rides, the good days and the bad. Their recovery was long. We almost lost Meghan after one week. Her lungs were just too damaged. She was placed on a special ventilator called an oscillator and needed to be paralysed by drugs in order for the oscillator to do its job at repairing her lungs. She came off after 5 days and placed once again on a regular ventilator. Feedings were resumed at 1 ml of fortified formula with breast milk per feeding. One ml is 1/5 of a teaspoon. Ashley was very small and suffered from apnea spells, where she would stop breathing all the time and they had to resuscitate frequently. They both had numerous infections, too many between the two of them for me to recall. They slowly gained weight, a few grams per day, on good days up to 50 grams. My life was upside down; with a 1 year old at home it was hard for me to spend a lot of time at the hospital. My husband, a wonderful, supportive, understanding, caring man kept me sane but I'm sure inside he was falling apart, to see his little girls struggle with every breath and fighting for their lives. We would go to the hospital every night to bathe them and give them their bottle and put them to bed for the night. Once we were able to do so.

After 7 long weeks of being intubated, they finally began breathing on their own with the help of continuous positive airway pressure (CPAP) and oxygen via nasal prongs. There was the possibility of a brain haemorrhage in Ashley, a mild one but after 24 hours it was gone. We weren't sure what the outcome would be until she was older.

Finally after 15 long weeks on August 22, 1997 (my due date) I brought Ashley home, she weighed 5 pounds 10 ounces and remained on oxygen until November. Meghan came home 4 days later weighing 5 pounds 14 ounces and remained on oxygen until Christmas. But no matter they were finally home, both of them ALIVE.

Then began the trips back and forth to the hospital for numerous appointments about 3-4 times a week. Meghan was home for 4 days when she was re-admitted to CHEO to undergo laser surgery on her eyes in order to repair scar tissue on her retina caused by the high levels of oxygen and prematurity. They both developed gastrointestinal reflux, and were placed on Zantac and Cisapride. Their weight gain was very poor because of all the steroids and of course the reflux and by Christmas at the age of 7 ½ months (4 months corrected age) they were starting to roll around and crawl. They weighed a mere 10 pounds each. In January of 1998 I started suspecting that maybe something was wrong with Ashley's hearing but she had just had a bout of RSV (a very bad chest cold/lung infection) so her tests were inconclusive. She was re-evaluated in March of 1998 and again the test was inconclusive. Meghan on the other hand was doing very well she received her eyeglasses and was so cute. Of course it was a struggle to keep them on, but she finally got the idea.

Their first birthday was extraordinary. I couldn't believe they were one already. They weighed 15 pounds each and were starting to look alike. Time flew by and my babies were OK, thanks to the wonderful angels in the NICU at the Ottawa General Hospital who struggled to save my beautiful baby girls.

Shortly after their first birthday, and after numerous ear infections they both got tubes inserted in order to drain some fluid. And finally Ashley was diagnosed in June of 1998 as having a profound bilateral hearing loss. She received her hearing aids and started Auditory Verbal therapy once a week. We didn't want to use sign language because we wanted her to learn how to listen and speak. Ashley was placed on a waiting list to receive a Cochlear Implant, which are rays of electrodes placed in her cochlea in order to channel sound through the ear closer to the nerve that carries it to the brain. They're like hearing aids except more powerful and need to be surgically inserted. The waiting list could be from 6 months to 2 years. Plus, she was still very small, too small for the implant.

In February of 1999, at their 18-month follow-up appointment at the neonatal clinic, they noticed a lot of stiffness in Meghan's legs. I had noticed too, plus Ashley had been walking for 4 months already and Meghan was just pulling herself up to stand. A few short weeks later Meghan was diagnosed as having a mild form of spastic diplegia Cerebral Palsy. But nothing was going to stop her by her second birthday she started walking.

At this time life is pretty much back to normal if you can say that with two 3-year-olds and a 4 year old. I had a hard time bonding with the girls for the first year and it left me feeling very guilty but after reading many stories and books, I found it to be very normal. Now I am totally in love with them, my baby girls are beautiful in every way possible, smart and along with my son the joys of my life. Ashley received a Cochlear Implant on September 17th 1999 and now 18 months later, her comprehension is about 100%, her speech is coming along, and she has the vocabulary of about a 2-year-old child. She has Auditory Verbal Therapy 5 times a week and will be starting school next September along with her sister. The pure joy of hearing her say, Mommy and I love you is all I could ever hope for.I know that both Ashley and Meghan will go far in life.they are wonderful little girls and very healthy. They now weigh 29 pounds and who would have thought that over 3 years ago 2 little baby girls the size of a pound of butter would be so lively and HERE!

But for any of you going through this experience, never give up hope, love your children, they'll bring you happiness and joy and a sense of self like no other feeling in the world. All children are miracles but premature babies are even more so.

Stephanie McCambley
SAH Mom of Matthew (May 17th, 1996) and Meghan & Ashley (May 15th, 1997)
Membership Director for Multiple Birth Families Association

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