The Sextuplets' Birth Story

It’s the summer of 2004, and I’m ready. I’ve gotten over the trauma of Mr. B’s birth (there was nothing traumatic about it—a normal vaginal birth, struggle with breast feeding, and learning how to integrate this new being into my life). So I call my Reproductive Endocrinologist’s (RE) office to make an appointment, thinking it would be months before we could get it. But since I was already an established patient, I got in within two weeks. I was thrilled.

When we saw our RE, he put me on the same course of medication we used to conceive Mr. B: Clomid and the injectable Repronex. It was all very familiar. I went in to the office often for sonograms to make sure my ovaries weren’t being over-stimulated. In the end, I had two large follicles that met the criteria and four smaller ones considered too small to ovulate. (When I got pregnant with Mr. B, I had one large follicle and four smaller ones, so I really thought nothing of it.) We knew we had a higher chance of twins this time around and we were prepared for that.

During the time we were waiting to be able to test for pregnancy, our small family went to the beach for a vacation. We had a great time, but I was definitely feeling off. The indigestion really made me think I was pregnant. When we got home, I immediately took a pregnancy test which was positive. I called my RE and had a blood test that confirmed my home test. The levels indicated I was probably carrying more than one. I was ecstatic. I spent the month dreaming of twins. How we would fix the bedroom in the back of the house up as the nursery. Wondering how we could afford two of everything. My husband and I were happy.

Then came the sonogram. Having been through this before, I could immediately see that there were way too many sacs. The technician counted six. She told us to hold off getting upset until she checked the heart rates. All the sacs had babies with normal, healthy heart rates. She then found a possible seventh sac. She went and told the RE. My husband and I were in shock. Horrified. THIS was NOT in the plan. I was crying and said, “I’m going to be one of those people on the news!”

My RE was stunned. He’s one of the best REs in the area and considers triplets a failure on his part. He tolerates twins. His goal is to get his clients pregnant with ONE baby. He mentioned reduction at this point, but I immediately shot down that idea. It was lunch time at this point, but he walked us down to the perinatologist’s office to talk to his friend. The perinatologist didn’t have much to say to us, but we scheduled an appointment for the next week and got the okay from him to travel to a family wedding that weekend.

At our appointment with the perinatologist, he ruled out the seventh sac. So we had six sacs and six healthy babies (so far). He immediately went into a long list of horrible things that WOULD happen if we continued to carry all of them and pressured us to reduce. My husband and I steadfastly refused. How do you chose which of your children will live or die? For us, the answer was, “You don’t”. From then on, the other perinatologist in the practice took over our case.

My main complication during my pregnancy was tachycardia, fast heart rate. For a few weeks, my resting heart rate was 120 making it VERY hard to sleep. Once I hit 20 weeks in the pregnancy, it dropped a little to 110 for the remainder of the pregnancy. I was followed by a cardiologist. I really needed to gain more weight, but had to be careful as my heart was already showing signs of being stressed.

I continued to see the perinatologist every other week. At week 16, he was able to determine the sexes of the children: 3 boys and 3 girls. This doctor was incredible and never once gave us the impression that he was overwhelmed by our situation. He was the picture of calm and could ALWAYS find what he was looking for in the sonograms.

Luckily, my mom, a retired Labor and Delivery nurse, and my father, a retired electrical engineer, were able to help me care for Mr. B and drive me to appointments as the pregnancy wore on. Around 22 weeks, my perinatologist officially put me on bed rest at home (I had already pretty much “bed rested” myself for the two weeks prior). I was allowed to go to the bathroom and move from my bedroom to the living room. He also ordered me to take Heparin, a blood thinner. So twice a day, I had to inject myself with this medicine in my upper thigh.

At this time, middle school girls from our church school started coming in pairs to help me get Mr. B up from his nap in the afternoon and play with him for a little while, giving my mom a break. These girls continued to come for several months to help entertain my little man.

On our first OB appointment in the New Year, 2005, my doctor informed me that she didn’t think our perinatologist would let us go home. I was in shock. When we saw him right afterwards, she was proven right. I was almost 24 weeks and hospitalized for the duration. This was the hardest part so far as I didn’t even get to say goodbye to Mr. B. I was fortunate that my parents were able to bring him up to the hospital for a few hours each day (my husband brought him on the weekends) so we could spend time together. It became a part of his routine. He handled it all so remarkably. I thank God so much for that.

Two weeks later, at my weekly sonogram, we found out that one of the boys had reverse cord flow. He would most likely die in utero within two weeks. We made the excruciating decision to wait for the sake of the others as I wasn’t even at 26 weeks yet. At my sonogram the next week, we learned he had passed, more quickly than expected. I spent the next few days scouring baby books and the Internet for the perfect name for him. My husband and I decided on Matthew – gift of God.

In the next weeks, I developed a horrible headache and had protein in my urine, both signs of preeclampsia. My blood pressure was creeping up steadily. I would often have the aide come back and retake my blood pressure in the hopes it would lower! A MRI was scheduled as my OB wanted to rule out a sinus headache, but before I could go a sonogram revealed that Baby B (Mr. J!) had reverse cord flow and that my cervix had shortened dramatically. As I was just shy of 28 weeks, delivery was set for the next day.

The children were born rapidly. Unfortunately, I had to have added sedation as my epidural did not take all the way. Although I remained awake for the delivery, I was very groggy. The kids were born by c-section at 9:20, 9:21, 9:22, 9:23 and 9:24 am. Baby A (Miss M) weighed 2lbs 7oz; Baby B (Mr. J) – 1lbs 14oz; Baby C – 2lbs 3oz; Baby D (Miss E) – 2lbs 3oz; and Baby E (Miss L) – 1lb 13oz. The doctor said she just reached in and if she got a head or leg, she’d pull them out; if she got an arm, she’d try again. The delivery room was filled with so many people: 3 for each of the babies, plus 3 for Matthew and 3 for the possible 7th baby (they didn’t want to be surprised). And don’t forget the team for me! They were very prepared and a lot of effort was put into the delivery by the hospital. The teams were color coded the color followed each baby throughout their NICU stay. The babies were intubated and whisked to the NICU.

After the delivery, my body had a hard time adjusting and my blood pressure was very low. While they worked to stabilize me, my husband, mother, and sister went to a nearby room where the hospital Deacon baptized Matthew. I never got to hold him. It was years later that I was even able to look at the pictures. To this day, I can’t forgive myself for not being there to hold him and that he never felt his mother’s kiss. It was a mistake I would not repeat.

After four days, I was allowed to go home. It was a hard transition. A few days later, we had a funeral for our little boy. And meanwhile, the roller coaster ride of the NICU had begun.

At first, I would only go up in the evenings with my husband (we had a wonderful support group of friends and family who would come each night to sit in the house while Mr. B slept so we could visit the babies). I was still recovering, wanted to spend time with Mr. B who desperately wanted his mommy around, and I was pumping 8 times a day. As time wore on, I started adding a visit during Mr. B’s afternoon nap. My husband and I did our best coordinating a schedule to get the babies as much kangaroo time as possible (holding preemies against your skin is so beneficial to their development). My mother and father also visited the babies. I’ll spare you the details of the NICU. Those of you who have been through it know; those of you who haven’t: well pray that you never do. The nurses were fantastic. They pretty much have to hold your hand through it all, push you to be as normal a parent as possible, and take care of these most fragile of lives. The girls ended up having PDA ligations (a surgery to close a valve in their hearts) within two weeks of birth. Eventually, they stabilized but still didn’t eat well. The assumption was made that they had severe reflux. After almost 4 months in the NICU, the decision was made to do surgery on Miss E and Miss L to insert feeding tubes and perform a fundoplication (wrapping part of the stomach around the base of the esophagus to discourage the stomach contents from coming back up). Miss E came home 6 days later, exactly 4 months after she was born. Miss M had the same surgery a couple days later. Six days after Miss E came home, Miss L and Miss M followed.

The boys had a much harder time. They both had their feeding tubes and fundoplications in April, a little more than 2 months after they were born in an effort to help wean them off the ventilators. It didn’t work. Two months later, they both had tracheostomies. They had up days and down days. In August, Mr. J coded and they lost his heart beat for 9 minutes. He seemed like he wasn’t going to make it. We signed Do Not Resuscitate (DNR) orders and had our priest baptize him. A few weeks later, he surprised everyone and was back to his normal self. A month or so later, we rescinded the orders.

My other little boy developed an intestinal blockage. I was called up to the NICU late on Sunday night, September 18th as he needed emergency bowel surgery. I left my husband at home (as well as all my pumping equipment) and went up to be with my boy. He sailed through the surgery, but I was unprepared for what happened next. First, he had an incision from groin to sternum closed with massive amounts of staples. The nurses kept trying to get me to get close to him, but it was all so overwhelming. Then he coded. The staff jumped into action and brought him back. This happened two more times. I was getting a horrible feeling in the pit of my stomach. But I had to get home to help my husband get the kids up and I really needed to pump. So I left. As soon as I got home, I called my mother to come over so my husband and I could go back up. We left as soon as she got there.

About ¼ mile from the house, the NICU called and told us to hurry. When we got there, the staff met us at the door. Never good. They moved us into the “special room” – the one with the serene paintings on the wall and the comfy sofa. They told us our son had not made it. The fifth time he coded, they did continued doing CPR trying to keep him alive until we got there. After 20 minutes, they decided enough was enough and allowed my little boy to rest. They brought him to us and we held him and cried. The hospital deacon returned and baptized him. Mr. B was brought in where he got to meet his brother for the first time. He hadn’t been allowed in the NICU because he was too little. Friends and family came to say their goodbyes. This was the most horrible day of my life. I have no idea how long we held him, but I noticed that one side of his face was turning purple from the blood settling so we knew it was time to hand him back. The wonderful nurses took him back to his bed where they bathed him, dressed him and photographed him.

I decided that Mr. B needed to meet Mr. J so with no resistance from the staff I marched him to back to the nursery to meet his other brother. We held the funeral that Friday. My two boys now lie next to each other. The next day, we had the girls baptized. From then on, whenever I visited Jack in the NICU I could always see the spot his brother used to occupy and a stranger’s baby was there. It was difficult to always be reminded.

Mr. J made great strides after that. He did wonderfully. Less than a month later, he was transferred to a step down unit at another hospital where my husband and I learned to care for his tracheostomy and how to use his ventilator. On December 1st, 2005, he came home with 24-hour home nursing. He was hospitalized three times after he came home for pulmonary issues. One evening in April 2006, the day he returned home from one of his hospital stays, he was playing in his high chair when suddenly he stopped breathing. His nurse and I did an emergency trach change all the while administering CPR. We quickly lost his heart beat. EMS was called. I can’t tell you how helpless and scared you feel when you watch the life slip away from your child despite all your best efforts. EMS loaded him into the ambulance where they started an IV in his shin. Finally, we left for the hospital, just a few minutes from our house. In the ER, I was separated from him and left alone in a small waiting room. To this day, I kick myself for letting them do that. Mr. J was brought back. We now know that it was most likely scar tissue (a granuloma) that blocked his airway; scar tissue that could have been pushed aside with a longer tracheostomy tube that had been ordered, but done so incorrectly. The correct one arrived 3 days after this incident. From the time EMS arrived to the time he was revived in the ER, 22 minutes had elapsed. He was transported to the PICU at the children’s hospital.

The news was bleak. When we got the new trach tube in, his pulmonary condition improved immediately, but a MRI done days later showed massive amounts of damage done to his brain from the lack of oxygen and blood flow. He was also having seizures all over his brain. After two weeks, he was moved to the floor, and a week later we brought him home with another DNR order, which still stands.

So that’s my birth story from conception to homecoming.

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Brief Update:

The girls had a lot of therapy and help to overcome their prematurity and feeding issues including oral aversion. All had three more sets of surgery. In September 2005, days after we buried their brother, Miss M and Miss E had surgery to repair their fundoplications. In December, days after we brought Mr. J home, Miss L had the same surgery. In October 2006, all three had their tonsils and adenoids removed. This had the most impact on improving their eating. And in August 2008, all three had surgery to repair the hole where their feeding tubes used to be.

Mr. J continued to hang on and stabilize, so we weaned him off his ventilator. In July 2007, the machine was removed from our house. In June 2008, a scope revealed the scar tissue (the granuloma) in his airway and it was removed. Two months later, he had his tonsils and adenoids removed. We are now working on capping his trach trying to get him to breathe through his nose and mouth. We are hoping that one day we will be able to remove his tracheostomy tube completely. He gets various kinds of therapy at least 4 times a week and is showing that he has the ability to manipulate things in his environment. We are working to figure out just how much he can do and a way for him to communicate with us.