Our birth and heart story

In June 2009, our family grew by 2. Our boys were born on June 1, via c-section at 35 weeks, 2 days. Following 15 weeks of bed rest due to an incompetent cervix (cerclage done at 20 weeks) I became pre-eclamptic, and went in early to have my boys. We were unaware at the time that not only were we becoming a family of 4, but we were becoming a heart family. During my time on bed rest, I read a lot, facebooked a lot, and over-researched the benefits and 'necessities' of all organic everything. I was paniced over organic crib mattresses. . . . I read about the risks of a twin pregnancy, a twin birth, prematurity. . . .I didnt read about heart defects. They never even occured to me! Knowing what little I knew about a baby at 35 weeks gestation, I figured my boys would spend some time in the NICU. I spent part of the weekend before my impending c-section mentally preparing for a quick seperation so I wouldnt be AS shocked when my fresh babies were whisked away from me. My c-section was pretty much a breeze. I was definitely terried going in, and I even vomited mid surgery. (youre welcome;) I remember asking my husband at one point, " is this really it??" I couldnt beleive anything was even going on! Noah, my twin a, was taken to the nursery for review while I was still in recovery. He was in fact admitted to the NICU during this time, for respiratory distress. All the while, Eli, my baby B, was resting with me in my hospital bed. Eli, in fact, came up to my hospital room with me! I remember asking a nurse in recovery why his legs were so blue. I didnt know at the time that it was a tell-tale sign for his heart defect, TGA, transposition of the great arteries. She told me they were blue because he was still so scrunched up from being inside of me. (idiot) Once settled in my room, I called the nurse in and told her to take Eli to the nursery immediately. His breathing seemed off to me and I wanted him examined. He was soon admitted to the NICU as well. .. for respiratory distress. The next few days were awful. But even then, I didnt know what awful was. I was not able to attempt breastfeeding, even one of my boys. I was given a hospital grade breast pump. I hooked up to that thing every 3 hours for 15-20 minutes. It took 4-5 days to get any actualk milk out. Until then though, my husband proudly delivered out little syringes of whatever I could get out to the NICU, and the nurses split it between the boys. (there was one time waaaay later when I got 10oz at once. . . if youve ever used a breast pump, you know what an accomplishment THAT is! I even have a pic somewhere, lol) I cried. A lot! Im sure a lot of it was pure hormones. My body was coming down from carrying twins!!! I cried most times I pumped because I was devastated that they needed to be on the NICU. They needed care that I couldnt provide, when I had been their home for the last 35 weeks and 2 days. I heard other newww babies crying down the hall, and I cried because I was jealous of their mothers. I was angry and hurt that my babies were down the hall and around 2 more corners from me. Of course it was what they needed, but that doesnt mean it sucked any less. My wonderful dr extended my hospital stay by one more night so I could be under the same roof as my kids a bit longer. On my last morning, we ventured down to the NICU for some kangaroo time(its a beneficial skin to skin time for parents and abbies, and promotes bonding) I was interrupted by a woman who came in needing to do an echocardiogram. Brian and I were surprised to see anyone in our curtained area, and more surprised that anything was happening without us having to sign off. We had signed off on a million things in those first 5 days. Our best guess, since we never asked, was that they didnt need a signature because an echo is a noninvasive test. It was explained to us that on Wednesday, day 3, they heard a murmur in Eli's heart, and they just wanted to 'check it out'. We went along with it, and sat by for a few minutes while the techician did her exam. She couldnt answer any questions, so we headed back to my room for lunch and to finish packing. Moments later, a new awful entered. The neonatalogist came to my room, as I sat pumping in my bed - again. His words were and remain to be a blur. I think I may have passed out had I not been in bed, holding breast pump funnels to my body. (remember, by this time, actual milk was coming out and i just couldnt let it go to waste) He explained somehow that 'Eli has a heart defect, he needs surgery, and we are no longer equipped to handle him, and he will be transported to hospital 1 or 2'. There was no question about doing the surgery or not. He would have died for sure had we not allowed his surgery. A quick and hysterical call to our parents, who were out shopping for the boys, and they arrived at the hospital. Somewhere in there, we picked a hospital, and in doing so, a surgeon and a cardiologist. BOOM. Heart family. FUCK!!!!! A horrible, horrible day. Ive looked back at the blog I was keeping at the time. The night before we found out about Elis defect, I wrote about the hours the nurses let us stay in the NICU with the kids! Letting us hold them and handle diaper changes, etc. If you are reading this as a non-NICU family, please understand that the rules and regulations of touching and interation in the NICU are all for the beneift of the child. The NICU is a quiet place of healing, so too much touching and interaction can easily become stressful and hindering to the babies. The echocardiogram found another heart defect, which may in fact have savged Eli's life. I beleive it was called a VSD - no clue what that stands for. He had a hole between 2 of his heart chambers which was allowing his blood to oxygenate. It was explained to us that sometimes, these defects correct themselves in the last few weeks of pregnancy. I think my pre-eclampsia and early c-section may have been the beginning of miracles for Eli. The dr's had to start him on a medication, progestin - i think??, which would ensure that the VSD remain open. A risk with this medication is that a baby can stop breathing while on it. As such, our 5 day old son was intubated. HORRIBLE DAY. In what seemed like a whirlwind, a medical team arrived in my room with Eli, prepped to be transported to a higher level NICU - across town. He was intubated, in a plastic clear box, and looked fake. We said a hysterical goodbye as they took him to the other hospital. I hadnt been discharged yet and still needed my c-section staples removed. Oh, and Noah was to remain at the original hospital. Yeah. . . We had already been connected with a cardiologist and upon my discharge, raced to meet her at Eli's new NICU. Empty carseats in the back. We sat by his bed and Dr. Wright came to meet us. I still remember her introducing herself as 'Eli's friend'. I as so taken aback that he had a friend. . . he looked fake and I wasnt allowed to touch him. She gave us a breif explanation of his surgery. She even told us that he would make it through this surgery and continue to make us gray the rest of our lives. She said that all of her heart babies were warriors - Eli has since proven to be no different. (I havent found any grays yet though. . . YET). This was all Friday, June 5. Surgery was scheduled for the following Friday, June 12. I think the team was booked up and the surgeon was hoping he would gain a bit more weight. He was born at just 4'7. We spent the next few days running around town. He visited Noah at once hosptial, Eli at the other, headed home to rest and take care of our pets, I had to pump breastmilk, we all had to eat. . . it was crazy. A case worker at the new hospital arranged to have Noah transferred over. I think she used a family hardship or something - I dont even know. She got it done though. Thankfully, though they were both still in the hospital, they were in the SAME one! UGH! Several days of ups and downs, hysterics and transported breastmilk, an explanation of srugery from one of the most skilled surgeons on the country and surgery day was upon us. We arrived around 6am, and sat nervously in Elis NICU pod. They almost didnt do his surgery because he had been fighting an infection of some sort. I remember thinking I would just collapse and die right there if they told me I had to have another night like the one before. Another morning, another drive not knowing what was happening. If this would be the last day of a family of 4. Thankfully, they took him to surgery. I remember the anesthesiologist promising us he would take care of Eli. That he would be kept comfortable. We kissed his little head goodbye and watched the double doors close ahead of us. Still not knowing. We were greeted by a full waiting area. We were so lucky to have family and friends waiting with us. Im still so touched by the view that morning. We spent some time with Noah. He was being such a rockstar and was starting to get really good at bottle feeding. By this time, his breathing was okay, and he just needed to learn to eat in order to come home. The nurse came out with updates every so often. I think I was with Noah for most of them, and heard everything via cell phone call. Each update was promising though. Terrifying and promising. Once surgery was over, and Eli was in his recovery room, now in the PICU heart unit, we were allowed to see him. Someone told Brian that he would be difficult to see. That a baby fresh from heart surgery is a tough sight. A lot of this is vague to me. Perhaps from raging hormones at the time, or a coping mechanism. Brian went in first, while I was still with Noah. He came to get me, and tried to keep me from visiting Eli in recovery. That was just NOT going to happen. I felt it was my job to see him, to be present in his shitty time. I HAD to go, for me. I dont know if it was a mistake or not. I still have terrible images in my mind - fresh as I relive this story. I just felt like I had to go. I wont go into details, but I will tell you that I had to wheelchaired out to the waiting area. Definitely a tough thing to see. We made it through the first crucial 48 hours, we made it through 16 more days in the NICU while Eli healed and learned to eat. He was home on his 28th day of life. Incredibly enough, he came home on NO meds. NADA! We dealt with some acid reflux soon after, and then he was on prevacid for that for 10 months, but his heart has healed. We were allowed to bring him home to Los Angeles at 3 months for a visit. A few weeks later, we moved home for good! He has, thankfully, met all of his milestones. We see a cardiologist annually now. She praises his surgical team each time we see her:) We had a rough start. Rougher than some, but definitely easier than others. I have recently joined some facebook heart mom groups, so I am looped in with the goings on of many families I dont even know. I read their success, hear the scary stuff and even hear about the losses. We got lucky. Eli's congential heart defect, CHD, is TGA - transposition of the great arteries. CHD's affect 1 in 100 births. CHD awareness week is February 7-14, the week before Valentines Day. I will be sharing facts and stories about CHDs on my facebook wall. At some point soon, there will be a congentital heart defect walk in Los Angeles. I WILL be asking you to walk with us, and asking or your money. Hand it over:) In all seriousness though, I am sharing this story to help spread awareness about CHD's. I had weekly ultrasounds during my bedrest - 15 weeks, nearly as many ultrasounds. At a specialists office. Ask your dr to check your babies heart at your 20 week sonogram. Ask for a pulse oximetry test at birth. Demand it! It takes 10 seconds and is noninvasive. If Eli had this test at birth, his surgery may have been sooner. He may not have been treated for respiratory distress - which he never had. Hope you read this all the way through. Its a tough read, but this is our story, and there are many others like it.