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Our Story
Robby - The Full, LONG Story
Four days before the attacks on September 11, 2001, and nearly a month before we expected her, we welcomed our gorgeous daughter, Chloe Raine, into the world. We had only been married for eight glorious, eventful months. The next year passed in that blissful beauty that only parents watching their first child grow have experienced. Soon after her first birthday, we learned we were pregnant again.
It was a time of great upheaval, as we were due to move to Guam from the Florida Panhandle in a matter of weeks. Still, we had so much to anticipate, and we were excited about all our new changes. Right before we moved, I had three OB visits back-to-back, because of previous pregancy complications such as severe preeclampsia and hydramnios (excess amniotic fluid). At the first visit, my blood pressure - which had remained normal between pregnancies - was once again soaring. Also, the OB did an ultrasound and observed two sacs on the screen - one with a heartbeat and one without. Robert and I had always joked that we would have two AND ONLY TWO kids unless the second time it was twins. Even though it was far from certain, I knew there were two babies in there and could not stop laughing. A second visit was scheduled for the following week to watch the progress of both "problems". At that time, my BP was still very high, but the second tiny sac was missing. One more visit was scheduled with the ultrasound tech for the following week - on the day we were to fly out for Guam.
At that visit, my BP was sky-high, and I was put on meds to control it. Everyone in the clinic was talking "chronic hypertension," which, of course, concerned me. Then the "expert" had a look at the sonogram and declared that no way were there two babies in my belly. With that, we accepted the fact that we were only having one more child, and we moved to Guam. We'd let slip to some folks that twins were a possibility, but we never confirmed the rumors.
Within weeks of our arrival, I had my first visit at the high-risk OB in central Guam. Walking into that hospital - and I use the term loosely, was one of the scariest experiences of my life. I nearly broke down crying at the thought of having my baby in there! Guam was pretty third-world compared to the mainland US, but this building was downright medieval. Still, I tried to keep positive thoughts. I didn't want any negativity and stress affecting my already worrisome blood pressure!
Once in the exam room, I had a 45-60 minute conversation with the OB. We discussed all my previous complications during my pregnancy with Chloë and my chances for having a VBAC (Vaginal Birth After Cesarean) this time around. We explored many options and developed a very thorough plan for the pregnancy and birth. Then came the time to have another ultrasound to check on the baby's growth. The second my uterus popped onto the screen, all of us in the room could very clearly see TWO tiny peanuts huddled together, womb-spooning. Once again, I was in hysterics. I'll never forget the OB's next words: "Remember everything we just discussed? That all just went out the window!" I pretty much had to accept that I would not be having a VBAC. It was a huge disappointment, but hell, I was having twins! What WAS I going to tell my husband this time?!! Would he even believe me?
Well, he did believe me, and five weeks later I was driving around in a new minivan. We sure would need it to accomodate three little kiddos.
Less than a week after we parked that behemoth in our tiny Andersen Air Force Base driveway, Supertyphoon Pongsona hit Guam on December 8, 2002. Words can not describe how destitute our life became for the next few weeks, but I'm game to try. The storm itself was the worst on record. We were still living without any of our household goods besides our luggage and a few basic necessities that we'd shipped ahead of time. The three of us huddled in our living room around the portable radio, listening as stations popped off one by one. Finally, the only station broadcasting the storm (or any other) news was crackling in from the island of Saipan to the north. And then, that was gone. Nauseous and vomiting from all the pressure changes, I popped some nausea pills and went to sleep. Rob and Chloë endured the brunt of it together. After it was over, the next morning, we went out to survey the damage. Miraculously, of the three cars in our possession (the van, Rob's Neon, and the car we were borrowing from a guy overseas), only the loaner vehicle had any damage. Our shed was torn completely from the house, save one wall behind which our lawnmower and bike were hiding. The beautiful, lush foliage that covered nearly all of Guam was completely stripped, making the woods surrounding our house look like they belonged in the Northeastern US in winter. There was no electricity, so there was no AC, hot water, cable, lights, stove to cook on, refrigeration, or any of that fun stuff. There was no potable water. The ports were all on fire, so no ships could make deliveries; therefore, there was no gasoline to fill our cars or the new generators we were all buying. Meanwhile, we were pretty close to the equator, so we were drenched in sweat. As seemingly the lone woman pregnant with twins on the island, I was probably the only one really enjoying those cold showers! The hunger was wearing thin, though, as we couldn't keep any food and no one could make any ice without gas or electricity. We made our way to the squadron mess hall for our one daily meal; the rest of the time, we ate junk. Our babies were growing nonetheless, completely unaware of the misery the rest of us were experiencing.
Meanwhile, because no one could see a membrane between our twins on the outdated medical equipment they used at the dunge- er, hospital, my OBs were worried that the twins were mono-mono (monochorionic, monoamniotic). This meant they had a much higher likelihood of experiencing life-threatening situations like twin-to-twin transfusion syndrome (TTTF). Also, my blood pressure was again climbing and I was starting to drop protein in the urine - a sure sign of preeclampsia. The docs were already talking about shipping us back to the States or at least having Rob do TAD (Temporary Additional Duty) in Hawai'i for the duration of my pregnancy. I resisted. Once Pongsona made her wrath apparent, however, I had no choice. The OBs decided I had to go. Now. Paperwork was immediately started that declared us ineligible to live overseas. That was in early December.
Several hospital stays for fainting and preeclamptic symptoms later, we finally left for the States in mid-February. We arrived in Norfolk, VA, on February 20, 2003. Nothing like military efficiency. And we wonder where the WMD and Osama are? Our pets, a dog and a cat, had to be left behind in Guam. There were simply no flights for them.
We moved into a hotel room. We stayed there for six weeks, switching midway to a new place that would allow our pets, who had finally arrived. Costs were rising drastically. We had nowhere else to live - not with pets. We tried getting quickly into an apartment. None were available. We tried to fill out a loan to buy a house - there was a months-long waiting list to even fill out the application! We tried desperately to find temporary housing with no luck, until I spied a small ad at the last minute that led us to the realtor who eventually sold us our house after those six weeks. Until then, though, life was very stressful - exactly what the babies (boys, we now knew, although no one else did) didn't need!
The day after we got to Virginia, I went to the high-risk OB at the Naval Hospital in Portsmouth. Seconds after I lay on the exam room chair, we saw that mystical, shimmery membrane separating the twins. All that way and all that drama for that - it was quite anticlimactic. We breathed a quick sigh of relief and thought we were out of the woods. Here we were in a new, big, beautiful, state-of-the-art hospital to deliver our NON mono-mono twins. My situation was becoming more concerning, but I still did not have preeclampsia. Everything was going to be fine.
When Chloe was born several weeks early, she came by emergency C-section and spent ten terrifying days in the NICU. Her health was up one day and down the next. So we were completely expecting NICU stays for both our boys, as well as another C-section delivery. We knew they'd spend some time there - probably a lot more than Chloe had - and might have some tough hurdles, but eventually we were sure they would come home and be our two healthy baby boys. I just had to maintain my health during the remainder of the pregnancy and last as much of the three months to go as I could.
Lady Luck was not on our side. Three weeks after we got to VA, I went in to Labor & Delivery for a run-of-the-mill nonstress test on a Saturday afternoon. We were told that I was in pre-term labor, at 30 1/2 weeks. I burst into tears with fear and begged them to do something to stop it. I was several cm dilated and apparently contracting every five minutes without being aware of it. I was also preeclamptic at that point. I was immediately admitted to the L&D Ward's Critical Care Unit. I was enormous and hating every minute of this pregnancy, but I was also desperate to keep my babies in until at least 35 weeks' gestation.
I was put on an MgSO4 (magnesium sulfate) IV for the hyptertension and was restricted to complete bedrest. No bathroom visits, no food, and nothing to drink. Not even ice chips. Imagine being nearly 7 months pregnant with twins and not being allowed to stuff your face at every whim! I won't even discuss the catheter, my bitter enemy...
Around the clock for the next three days, doctors and nurses were at my bedside to check the boys' heartbeats and my stats. Let me tell you about my boys. Robby was on my left; he was so easygoing, mellow - he stayed put when they tried to monitor him and was obviously going to be my "easy" baby (like his daddy). Jack, on the other hand, was all pain-in-the-butt and thus all Mama. He would push off the transducers when they tried to find him; he would kick me fiercely if someone so much as looked at the right side of my mountainous belly. Forget about trying to sleep on that side! He would not have it. He was a little mouse and would hole up for days at a time in a little pocket underneath my ribs, pushing out; if you haven't had the pleasure to experience this for yourself, let me assure you that it is excruciating and you should count yourself lucky!
The OB staff were therefore not having much luck getting the two on monitors; they were under orders to have frequent 20-minute recordings of their heartbeats, but they never once succeeded (thanks, in large part, to Jack). I was miserable. Starving, restless, uncomfortable, and flat on my back in pain with two little people sitting on my spinal cord! Every time I would get remotely comfortable, I'd nod off and apparently change positions, knocking the babies off the monitors. Nurses would come in and holler at me and jostle me until I got back into the right position. Then they'd go back to their station and play poker and other games, yelling at the top of their lungs to each other, leaving my door open to ensure I didn't catch a wink of sleep. On Wednesday morning, I called Robert at the hotel room and cursed a blue streak, telling him to come get me immediately as I was outta there! I'd had enough and needed a break. I yanked the IV out of my arm myself, signed all the "leaving against medical advice" paperwork and stormed out, under promises that I would return to the OB clinic for a check up in the morning. Ah, heaven. I ate and slept all day and all night.
We returned in the morning and, as nothing had changed, I was readmitted. This time, they recognized my complaints and put me on a regular OB-GYN ward. I would not be on 24-hour monitoring. I would not be on a catheter or MgSO4. I would have limited bathroom privileges and could eat and drink whatever and whenever I wanted. I thought, I can handle this, and settled in to hang out for the next 4+ weeks. I was stressed about what we'd do with Chloe, as I was a stay-at-home mom, but for once I determined to leave that up to Rob to figure out. Taking care of myself and the babies was Job One.
The nurses still couldn't get the boys on the monitor. I don't know that we ever really did get them for more than a minute or two at a time, but their heartbeats were always stellar whenever we did find them. Things were looking fine. My mother-in-law was sending me busy-work in the hospital, Rob was supplying me with McDonald's chicken breast sandwiches, and I had my own room and my own TV. I could deal with that.
Then, on Thursday, I started getting a sharp pain on the left side of my abdomen - Robby's side. It wouldn't go away no matter how I moved. I notified the nurses, who notified the doctors and told me that I'd be brought down to the clinic for an ultrasound. Thursday's office hours came and went with no news. I was in increasing agony and was told I'd be brought in on Friday. Late Friday afternoon, I hadn't heard anything and asked again to be seen. The pain was not right and I wanted to be checked out. I was told there was no time and that I had an appointment for Monday. I would have to be somehow satisfied with that.
In the wee hours of Saturday morning, I got up to use the bathroom and returned to my bed for breakfast. As soon as I sat up, I felt the bed get wet. I thought I must have peed, but I'd just used the bathroom. The moisture was increasing, and as it let out, I could feel that stabbing pain on Robby's side dissipating. It was a big relief. Since my amniotic sac didn't rupture on its own with Chloe, I didn't have the experience to be sure that that's what happened. I called the nurses in, and after giving me a chance to call Rob, they wheeled me back to the Critical Care area. The fluid was tested. Sure enough, it was amniotic fluid and I was in active labor one week to the day after first being admitted with preterm labor. Again I panicked, but Rob was on his way and he would make things all right.
He came with Chloe, since we didn't know anyone or anywhere to leave her, but they told Rob he'd have to leave her somewhere. He frantically called the realtor - the only person in the state that we knew - and she suggested bringing Chloe to a friend of hers until after the babies were born. Rob left immediately and raced her there. Unfortunately, the doctors became alarmed for some reason they wouldn't share with me and wouldn't wait any longer for him to return at the designated time of one o'clock. At noon, I was wheeled into the operating room, given my epidural, and cut open. Robby was delivered at 1221. He made no sound whatsoever. I was essentially alone, and I was scared. I begged answers from the anesthesiologist and anyone else I could see, but no one would tell me anything. In my head I was screaming, "Why isn't my baby crying?!!" but the only answer they gave me was, "The doctors are with him." I thought I would pass out from the fear. Then Jack was delivered at 1222. He also did not cry, and I thought I would die right there. Finally, finally, came the little wail I waited for, and then angry yells - from Jack. Still nothing from Robby. They whisked the boys out, and I soon emerged from the OR myself. As soon as I was brought to the recovery room, Rob walked in and asked if we were ready for surgery. His face fell when they told him the boys were already born.
The neonatologists soon joined us to discuss the boys' health statuses (stati?). They explained that Jack, at 3 lb, 4.7 oz, was very tiny but otherwise doing surprisingly well. He only needed a bit of room air but was not on any breathing machines. He was, for all intents and purposes, fine. Then they discussed Robby. They told us that he weighed 6 lb, 10.7 oz, and we both thought, "Great! He's a good-sized boy!" That thought stuck with both of us as we half-heard the doctor explain that he was very sick. We really didn't grasp anything at that time. Then they wheeled me into the NICU, with Rob walking along beside me, to see the twins. At that time, we understood the full import of his condition. He was hooked up to more wires and tubes than we could count. He was so swollen. His face was enormous and the skin was very taut, almost bruised. He was face-up on his bed, spread eagle, with his eyes closed. There were respirator tubes down his throat and other tubes in his chest, umbilicus, and elsewhere. He was not well. We just stared at him in shock as they tried to explain to us what was the matter. He was filled with extra fluid that was not allowing his heart to pump blood or his lungs to expand and contract. We figured his situation was serious but not life-threatening. That wasn't in the plan.
Then we saw Jack, and we gasped in shock at how small he was. He was not terribly attractive in that state, either! He was bright red and looked like an angry little old man. Unlike Robby, we were allowed to talk to and touch Jack. Robby could not handle any outside stimulation without his stats dropping drastically.
The next three days were probably the most difficult Rob and I will ever face in our whole lives. Not only did we keep vigil by Robby's side, but there were always at least three doctors by his bedside at all times. Pretty unusual, even for a high-level NICU. The nurses on my recovery ward were great, sometimes keeping Chloë for over an hour if we both wanted to stay with him. Otherwise, we took turns coming and going. Rob would go when he arrived at the hospital, and since I spent another week in the hospital after their births, I could come and go at all hours, sometimes going back to my room just to eat and pump milk for Jack. Poor little Jack didn't get nearly as much attention from Mommy and Daddy as his brother did those first days, but he was so loved. He was doing very well, though, and we knew Robby needed our focus.
Robby's condition was unstable at best. We would stare at his monitors and watch his oxygen saturation dip and rise, dip deeper and rise. It stayed in the 60s - 80s. Most of us with no breathing problems stay between 97 and 100% saturation. He punctured hole after hole in his lungs, from the excess fluid, requiring more tubes to be added to his chest daily. Finally the neonatologist, Dr. Stewart, came to us and told us that he had little lung tissure left to rupture. They had done everything they could for him and were running out of options. She had a treatment to offer us, but it was unapproved for use on babies earlier than 32 weeks. They could pump nitrous oxide through his ventilator, a gas that might help his O2 sats. Did we want to try it? We could have thought about it, but right away we told her to do anything she could think of to save our little boy.
She agreed, but at that time she told us it was time to think about the difficult questions. She didn't elucidate, and we weren't ready for her to do so. We just agreed that we would start thinking while they tried the procedure. His sats were slipping and we didn't have much time. They started the nitrous oxide about a day and a half after he was born. For hours, there was no change. Then I came by myself to see him, and the most wonderful thing happened. His sats peaked and reached 97 - and they stayed there! Every once in a while, for a few seconds, they would dip and go into the 80s or low 90s, but they would climb back up to 97. I could not have imagined a happier feeling. He was going to make it, damn it! I called Rob and our family and friends and told them the joyful news. We knew he had a rough road ahead of him, but he was now responding to a treatment for the first time. Jack was doing well, so I stayed in my room for a little while to get a break. When I went back several hours later, I looked at his sats. They were in the low 90s. While I sat there, I watched them go into the 80s, and then the 70s. I was so disappointed, I thought I would throw up. They stayed there and would not go back up.
I went back to my room to cry and wait for Rob. We started talking about the "tough questions". We agreed there would come a point where we couldn't put Robby through any more. We did not want to selfishly keep him around with zero quality of life just so we wouldn't have to deal with him dying. But we agreed that we were not at that point and would keep watching and praying. I called Dr. Stewart down in the NICU and asked if she had seen babies in worse condition than Robby bounce back and survive and do well. She said that it was rare, that there weren't many babies in worse condition than him, but that she had seen it. That bolstered our decision not to give up hope yet.
I went down to the NICU and had a conversation with Robby. We weren't allowed to speak above a whisper or touch him besides barely laying our pinky fingers in the palm of his hand, so I mostly mouthed the words and/or thought them. I told him that we loved him and that we wanted to take home two healthy boys. I told him we were dying to be his parents and show him all the love we had for him. I told him how proud we were of him for fighting this long and that we wanted him to keep fighting for his life. But I told him that if it hurt too much, if he didn't feel strong enough to keep fighting and didn't want to do it anymore, he could stop. We would not be angry with him and we would understand. We would miss him so terribly, but he didn't have to keep suffering if he couldn't take anymore. I said, "Please keep fighting if you can, baby, but Mommy and Daddy will understand if you can't."
Evidently he heard me and decided it was okay to stop fighting. His sats went lower and lower. We were told late Monday evening that he only had a few hours left. We quickly called the chaplain and had him baptized around midnight. We stayed by his side a while longer, and since nothing really changed, we decided to go back to my room for a rest until the doctors called us again. Rob and Chloë spent the night in my room. They slept, while I was mostly unable. I slept in snatches, waking up frequently to go to the bathroom, pump milk, or fret. I obstinately refused to call the NICU, because I didn't want to hear more bad news.
Instead I prayed that whole night, every second of it that I was awake, harder than I ever have in my life. I told God that I believed in Him and His ability to do all things. I knew that Robby needed a miracle - there was nothing else left we humans could do to save him - and that I knew God could give it to us. I knew He could heal him. I knew I could trust Him to take care of our baby and make him whole and healthy and able to come home with us. In the wee small hours of the morning, I started begging God for that miracle and focused only on my knowledge that He was able to perform one.
It didn't happen. The current neonatalogist on duty came in and woke us up in the late morning. We had lost 10 or 11 hours of Robby's time, sleeping. He told us Robby was not improving and that his sats were in the 30s and 40s. Then he uttered some words I will not forget for as long as I live: "His oxygen sats are no longer compatible with life. We believe the things we are doing to keep him alive are now starting to damage him."
That was all it took for Rob and me to know we had to make the hardest decision, the one to remove him from his machines so that we could hold him and touch him and not have him be attached, for a little while at the end of his life. We left Chloë with my nurses and ran to the NICU. We were put into a little room in the NICU to wait for him. The chaplain who baptized him was called back and waited with us. He made us uncomfortable, but we didn't know how to ask him to go. Then they brought Robby in. He was bundled in a handmade crocheted blanket. I held him so tight, and we cried and cried. We took turns passing him back and forth, holding him, crying, kissing his puffy little cheeks. The chaplain didn't move, so we finally told him we wanted time with Robby alone. Thank goodness, he left.
My high-risk OB came in and told us he'd lost his five- or six-year-old daughter about six months earlier. He told us what we would go through and some things we would probably feel and stayed about 15 or 20 minutes. Then he left, and we kept snuggling the baby. He looked so peaceful. He never made a sound, since he couldn't breathe. He never opened his eyes, since he was highly medicated. He just sat there, peacefully, in our arms. A doctor and nurse would come in periodically to listen for a heartbeat. They could still hear it, though it grew fainter each time.
I have a thing for babies' tushies, which I got from my grandma and share with my sister. I convinced Rob to help me peel his clothes back so I could get a look at his heinie. It was so small and so cute - one of the few things on him that wasn't morbidly swollen. (Tiny Jack, with a low enough weight to fit the smallest preemie diapers they had, had to wear the next-bigger size because of his chubby butt!) I also wanted hand and footprints for the baby book. They brought in their stamp and paper, and we did them together. That hospital usually doesn't do hands, since the babies clench them and get ink all over, but that wasn't an issue for us.
After a little more than an hour of this activity and kissing and crying, the doctor and nurse came in one more time to listen to Robby's chest. We watched as he finally shook his head and spoke softly, "He's gone." It was almost exactly three days after he was born, more than 12 hours since we'd had him quickly baptized. He held on longer than any of us expected.
We felt like we were being rushed and soon gave him back to the staff. Chloë been allowed in to the NICU the day before and had seen him, but we'd never had our twins together. We didn't dress Robby or change his diaper. We didn't bathe him. We gave him back sooner than we would have liked. We didn't take him back to my room. We didn't do so many things that just didn't occur to us to do and that the staff didn't think to suggest. While we were planning for his memorial service a month later, we finally had a chance to read through all the pamphlets on infant loss that they had unceremoniously plomped down in my hospital room. We read so many things that we wish we had done, and it still pains me to this day that we didn't know to do them. That is one of the greatest reasons for my mission to begin this charity and include that informational card.
We were allowed to use the NICU phone to let people know that Robby had died. The chaplain sat behind us and asked, "Are you done?" after every phone call - even the first! We quickly said hello to Jack and then returned to my room to talk and cry. Chloë came in while we were sobbing, and she said something that just made us burst out laughing. She has always been our little Sunshine Girl, and were it not for her we would have been lost ourselves. But the crying continued, and my head felt like a train was running through it.
I don't know how we made it through the next few days. We tried to use LifeNet to donate Robby's organs, but we eventually found out that they were unusable. We had to sign insurance documents and deal with the arrangements for our sons remains and do so many things. It's a blur. My dad and his girlfriend had come to visit the boys before Robby died. After had died, Rob's father, mother, sister and stepmother came to visit, as well as one of my best friends. They helped us a great deal. My friend did the things we couldn't do, like call around for cremation rates and rent me a breast pump. We are so grateful they all came to be with us.
It has been more than 12 months now since Robby died. Jack spent four weeks in the hospital before coming home on Easter eve. He has done so well and, besides being underweight like his older sister, has not had any serious problems. He's now a year old and trying hard to learn to walk. He and Chloë are beautiful bright spots and really helped us get through this time.
A month after we lost the baby, I went to an OB who diagnosed me with post-partum depression. That diagnosis annoys me, though many people have used the expression. I don't feel I would have been depressed over giving birth to two beautiful boys and bringing TWO boys home! I am depressed because my son died, not because he and Jack were born. But I was referred to a therapist and put on several medications before finding the right combination to help me cope. I'm still seeing my therapist and a psychiatrist who controls my medications. It has not been an easy year. I have been eating ice cream faster than they can make it - I haven't lost an ounce of my twin pregnancy weight, but on the other hand, it's difficult to cry while you eat ice cream! I have had several scary episodes and alarming symptoms with my depression, but I am still here and now that I am starting up this charity, I actually feel somewhat strong. The kids and Rob are a godsend.
And that is our story. I hope this helps people who have not had a loss and are considering donating to this very worthy cause understand what it's like. And I especially hope it helps the people who have had a loss realize that they are not alone and that you're not crazy for thinking some of the things you do. If you would like to share your story or your pictures, please email me and I will post it on the site. Thanks for reading. God bless.
Update
It has now been two years since our little boy left us. His brother just turned two, but he's still quite tiny. His smallness allows him to get away with more than he should, so he's quite an imp at this stage! He's walking and eating well and getting into more things each day. Jack's a bit of a slow talker, but he has blossomed wonderfully in his continuing speech therapy. We are also now expecting our fourth - and LAST! - child, Sophia, in April of 2005. Rob and I are very excited about our new arrival, but there are many concerns and fears as the pregnancy develops. So far, so good.
We spoke with one of the leading researchers of twin-to-twin transfusion syndrome in May of 2004, and after hearing all the details of my story and reading the autopsy report, he was absolutely certain that is what happened to our boys. He had no doubt or possible alternative explanation and was dumbfounded about why my doctors didn't see that - or admit to it if they realized it upon their births. We are now taking steps to ensure that this doesn't happen to another family again. Please keep us in your prayers as we endure this process.
Update
The statute of limitations for legal action for Robby's death has run out. While we still fervently believe our doctors made a mistake in not diagnosing the TTTS and subsequently deceived us in the information they gave us, we have decided not to pursue a lawsuit against them. We are working on forgiveness and achieving peace, although it would really be nice to get an apology from them. The more we learn about TTTS, the more we're sure that's exactly what happened, and it's hard not to be angry. Please continue to keep us in your prayers as we try to move past our devastating grief.