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By Stephanie Lerner-Ernsteen
TTTS Foundation NICU Coordinator

I invite you to write your own imagines, as it is a powerful therapeutic exercise. This is my 'imagine' for my twin sons Josh and Even, survivors of twin to twin transfusion syndrome.

Imagine that your grandfather is a twin, so you are told that you will probably have twins one day. You and your sister have actual fights over who gets to have the twins. Imagine 20 years later happily becoming pregnant and asking the doctor about the chance for twins and being told it was a myth that you would have a higher percentage of chance for having twins. Imagine at 18 weeks, being really large and being told by the same doctor, “I think you have at least two babies in there!” Imagine the nightmares that night! Then, imagine finding out that you are having identical twins (not hereditary) and that they are so identical that they are in the same sac (and not finding out at the same time that this is incredibly high risk and both babies could die from cord entanglement). Imagine your abdomen growing so fast that you literally are bigger every day and people say to you, “Are you sure there’s only two babies? and “There is no way you are going full term”). Imagine thinking great, I hate being pregnant, I want these babies out of me (little did I know!)

Imagine being given permission to go on vacation to California and even being given a note from the doctor for the airlines explaining you weren’t full term, just 22 weeks pregnant, so they would let you on the plane. Imagine, while in California having wet underwear and going to the hospital for testing to find out that it is not amniotic fluid (and years later finding out that ferning tests don’t show up until 24 weeks). Also, having the doctors telling you to raise your hand on the airplane to tell the pilot to land the plane if your water breaks. Then, seeing your own doctor the next day and being tested again, and told again it is not amniotic fluid, but they are concerned that your abdomen has grown 7 cm in two weeks. Imagine this is the first time we ever hear the diagnosis twin to twin transfusion as a possibility.

Then, imagine three days later having a level two ultrasound with a high risk doctor and finding out that you are having boys, and that you do have twin to twin transfusion. Also, the doctor politely asking to check your cervix and telling you that you are 1.5 cm dilated and leaking amniotic fluid, then telling you to get over to the hospital. Imagine thinking bed rest would be the worst thing you could experience in your lifetime.

Imagine being given three options by the high risk doctor at the hospital, all of which have an outcome that your babies will most likely be born dead no matter what they do. Then feeling like you have to go to the bathroom, having your water bag gush out and the doctor joking that you had Lake Michigan inside of you. Imagine being pushed into what looks like a closet but is an operating room with 50 people instantly there and naturally pushing out twins two minutes apart. Imagine crying because you don’t know what to do because you never took any classes to prepare you. Imagine getting to look over and see one baby lying there, at least seeing he has dark brown hair. Imagine the doctors slowly showing the other baby to my husband (who I didn’t even realize wasn’t in the room with me) and our parents, too slowly as if they know the baby will die, so the family might as well see him while he is alive.

Imagine lying in a room, freezing in shock, and repeatedly asking when you can see your babies and what was happening and being told, “they are working on them.” Imagine never wanting to know exactly what that means. Then imagine five hours later getting to go downstairs and seeing the most beautiful boys in the world, even if all you can see is their hair and fragments of deep brown skin. Imagine remembering that you were afraid to have children because you worked with abused kids and you saw how horrible the world can be and your husband reassuring you that we need to equal the world with great children, and you responding that we will have Martin Luther King or Ghandi. Imagine looking at these brown babies and thinking you’ve actually done it. You have created little boys who are going to make the world a better place.

Then, imagine being told your sons were not 24 weekers as you had thought, but 23 weekers, because you counted wrong and that they only weighed 661 grams and 526 grams. Imagine not knowing what a gram was. Imagine being afraid to ask if babies this early had funerals. Than imagine not being able to decide on names for your boys and being pestered by the hospital for names. Then, giving the smaller baby the name Evan, which means young warrior and the larger twin, Joshua, which means blessed by GOD.

Imagine sitting by Evan’s incubator because he was so small and then finding out that Joshua has a grade III brain bleed and not knowing how you can ever take care of two such sick babies. Imagine countless infections, and one fungal infection that was in Evan’s blood stream that we were told by a doctor that wherever it landed would be infected…if it was his eyes he’d be blind, if it was his heart he’d die. Imagine hearing that they wouldn’t be surprised if he was dead in three days. Imagine sitting by his bedside for three days and then the same doctor coming by all smiley and saying, how’s everything going as if nothing was wrong. Imagine being so lucky because the infection never landed, and cleared up.

Imagine waiting 3 weeks to hold Josh for the first time and 7 weeks to hold Evan. Imagine waiting 10 weeks for Josh to get off the ventilator. Imagine purposely pulling his pacifier out of his mouth so that you could hear him cry for the first time. Imagine Evan finally getting off the ventilator after 13 weeks.

Imagine being told that if Joshua doesn’t have surgery that day (Friday the 13th) he will be blind, then having him rushed via ambulance to another hospital. Imagine the doctors there telling you that he doesn’t need surgery. Imagine not knowing whom to believe.

Imagine too many horrible days to write about and never being able to let your guard down for 20 weeks when both of your twins come home. Imagine after 18 weeks, Josh weighs 5 pounds 3 ounces, but Evan only weighs 3pounds 14 ounces after 20 weeks. Imagine a reporter is waiting at your house when you bring Evan home, because you find out that your twins are now in the Guinness Book of Records as the youngest twins to ever survive. Imagine being interviewed by some of the local news stations and your twins being on the cover of the local newspaper.

Imagine at one year old, your twins weigh 10 and 12 pounds and people stop you every where you go. Than at age 2, Evan finally reaching 20 pounds and at age 6 reaching 30 pounds and now at age 10 weighing only 44 pounds.

Imagine your twins not walking until 22 and 24 months, not talking until 3 years, and not being toilet trained until age 5. Imagine having your twins in therapy since they are infants. Imagine that your house is filled with every toy ever recommended by a therapist. Imagine now trying every experimental therapy available to help your kids “catch up”.

Imagine at age 8, your twins are in regular classes but still have a lot of language problems which are now being called Central Auditory Processing Disorder. They also have Amblyopia, Sensory Integration issues, fine and gross motor issues and social issues. But, imagine, that they are the sweetest, nicest, most gentle boys around. They are reading and doing all school work at grade level in all areas except writing (because of language and fine motor problems).

Imagine at age 9.5, your sons have an excruciating time writing paragraphs and you have no idea how to help them. You sit by their side and try to ask the “who, what, where, when, why, how” questions to jog their thought process, but they stare at the paper and you blankly. Imagine the frustration they feel because they are so smart and can’t get the words out. Imagine your child tells you that he thinks he is stupid, so what is the point of trying to write. Imagine the frustration you feel watching your children struggle and feeling so helpless and that it is so unfair that your kids have to struggle after everything they have been through in their life. Imagine knowing that you will spend a fortune trying everything to make their life easier.

Imagine actually not regretting anything that you have been through (accept that your kids had to suffer) because you know that you see your children in a light that most parents never get to. Imagine appreciating your children and enjoying them thoroughly and realizing how lucky you are to have them.

Imagine some days forgetting what a gift your kids are because you are caught up in the struggles of helping them. Imagine reading your own poetry and words to cheer yourself up on days when you feel frustrated and having it to help you ultimately remember to ………

Imagine knowing that you won the only lottery in life that matters.

Stephanie with Josh and Evan

Stephanie with Josh and Evan

Josh and Evan

Josh and Evan

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