Lily and Eve

Switching jobs after learning I was pregnant was a bad idea all around. Because of the 4-month waiting period to get insurance coverage, I didn't have an ultrasound until 26 weeks gestation. So up until then it was a few prenatal visits where we'd find the heartbeat and measure fundal height. Everything was always spot on for a singleton, until April 4, 2007 when the ultrasound technician moved from my left to my right side, back and forth, before saying, "I have some news for you ... Head number one ... head number two." Twins. BIG shock, especially so late in the game. She muttered about them being identical because they were in the same sac, and then went about taking measurements and giving us pictures. We went home elated and excited. Twins would be hard, but we were having two girls and that would be twice as nice! But in the back of my mind, I rememebered the "same sac" comment and hopped online to check it out. Elation quickly changed to intense fear and I called my OB to ask if there was one of those all important "membranes". The nurse stated, "Of course there is, don't worry about it. We're setting up the appointment at the high risk OB and we'll get back to you on when it is." For the moment, I was relieved.
Two weeks later, on April 28, at 28 weeks gestation excitement once again turned to fear because the high risk OB turned around and told us they were monoamniotic twins and we'd be delivering at 32 weeks or so. Which at the time was only 4 weeks away and we hadn't finished a THING on the nursery, thinking we'd have more time. We were so shell-shocked we didn't ask any questions, but went home where I went back online and read more about momo twins. Saw the 50/50 chance of survival statistic, read all the cord entanglement and compression warnings, and managed to just thoroughly twist my stomach into knots (which the babies then proceeded to kick...) I did find the Web site, but was still so very in denial that I posted a few short times and left again. My OB never mentioned inpatient and brushed off the idea when we mentioned it. We never pursued it. Every second of every day that we were not being monitored, I would alternate between being fine because the babies were kicking as usual, to being paranoid and crying because I was afraid they were going to die while I slept. Still, no chance of the doctors agreeing to inpatient. It was so late in the game we never thought to switch doctors. We just went to our three appointments, Monday, Wednesday and Friday's, and sat through ultrasound after ultrasound and NSTs that sometimes took an hour to do. The doctors would never discuss the dangers of this pregnancy, never seem alarmed or worried.
On May 11, I did enter the hospital not because of the momo diagnosis but because of cervical shortening and some contractions. My doctor said, "It's normal for momo mothers to end up in the hospital," which was sort of a blow because he was admitting they knew that many went inpatient. They had all along told us, "If something was wrong, the doctors would put you in the hospital, so stop worrying." Yeah, right, easy for THEM to say. While in hospital, the girls behaved wonderfully with no heart fluctuations or distress and we made it to our scheduled delivery at 32 weeks and 5 days. Lillian Page was born at 8:56 a.m. and Evelyn Michaela at 8:57 on May 21, 2007. They were 4 pounds 1 ounce, 17 3/4 inches and 3 pounds 9 ounces, 16 inches respectively. Right off the bat, Lily had breathing trouble and was intubated on arrival in the NICU. Eve held out a little longer, needing only CPAP until that night, when she too went downhill enough to need a ventilator. Both received surfactant and stayed on vents for 4-5 days before transitioning to CPAP. Lily was off that quickly as well and breathing on her own, but Eve remained on a nasal cannula for 6 weeks. Both had PDAs, which thankfully closed with meds. While Lily's breathing was quickly fine, her digestive system was not. For 6 very long, very terrible weeks she pretty much survived on total IV nutrition while the doctors tried to determine why she was not tolerating her feeds. (Nevermind that I told them I never could tolerate breastmilk, they just ignored me...) After a billion x-rays, three barium enemas, a spinal tap to test for infection, a rectal biopsy for Hirschsprung's Disease and doctors scaring the heck out of my husband and I, they said they didn't know what was wrong and it was "probably just prematurity" - the doctors way of stating, "We can't figure it out, we'll just wait." I insisted they stop feeding her breastmilk, and soon after, she was tolerating feeds -- only to begin projectile vomiting because she was obviously anemic (even obvious to non-medical mom...) Once she got a transfusion, she was home the next day. Eve came home 10 days before their original due date, Lily the day after. After 42 and 52 days in NICU, we were finally one family at home. The terror of the pregnancy and NICU were over and soon became mostly a blur, though the worst parts are still somewhat fresh in our minds. Now, with their first birthday around the corner, Lily's birth defects (a butterfly vertebrae, duplicate ureter and extra intestinal "loops") aren't as scary and Eve's breathing is fine. We are very glad we were so lucky, but very angry that our high risk OB did not put us inpatient. After returning tot he site and reading how many DO, we can't help but feel that practice was far behind the times. Now when asked about it, I say PUSH PUSH PUSH for inpatient care. It saves lives. We're just lucky our girls didn't need it, despite the "mass of cord" that came out when they were born. A large clump of knots that shocked us, the doctors and every who has seen it since. There is hope for momo babies, and going to the Web site will reassure many expecting parents with its large archive of stories and wonderful families who still regularly post.
Cord pic: Duh...



NOW: Eve left, Lily right