Did you know that November is Prematurity Awareness Month? In fact, November 17^th happens to be World Prematurity Day. I never knew any of this, and did not know too much about prematurity, as a whole, before my tiny men entered my life. Each year since then, I have been so honored to share my own birthday (I’m 30-again today) with this awesome day, and spread awareness.

As most of my readers know, my twin boys were born via emergency C-Section at 34 weeks, 5 days. For reference, “normal” gestation time is 40 weeks. I managed to keep the boys in for quite some time, and did everything I was supposed to do, but they had their own plan, and my body could not safely keep them inside any longer. No matter what anyone tells me, and despite being a logical person and knowing this was not my fault, this is guilt I will always live with. Although 34 weeks is longer than some stories of prematurity I have heard, my own preemies definitely had their issues. No two stories are the same. When my boys entered the world, I got to see them briefly, and then they were immediately brought down to the NICU (Neonatal Intensive Care Unit), each with their own team of doctors and nurses. They spent eleven days there, fighting for their little lives. Seeing them so sick completely tore us apart. What was even worse was when I was discharged and sent home. Not only did I have to leave two huge pieces of my heart behind, but I had to figure out how to split my time between my sick preemie boys, and my beautiful 22-month-old daughter who was at home and still needed Mommy around.  I had to do all of this while recovering from a major surgery. All three of them needed me, but they were not all in the same place. Taylor did not much understand what was going on, but thankfully, she is and always has been a trooper.

The boys had a host of complications between them. They had trouble feeding for quite some time, and had to be tube fed. Joseph had a heart murmur that was detected in NICU that needed testing, ultrasounds, and follow-ups when we finally left the hospital. I remember sitting in the ultrasound room, trying to keep my five month old still so they could get images of his heart. All the while, trying not to think about Jackson and Taylor who were hanging out with my dad, just outside the hospital doors. I remember telling myself that my baby needs me to be strong, and this was not the appropriate time or place to lose it and cry. I did, however cry later that night when everyone was in bed.

Both boys had jaundice and had to be under phototherapy lights for a portion of each day. Jaundice happens when a baby has an underdeveloped liver and they can not get rid of the biliruben (a waste product) from their blood. For a while, both of the boys had a yellow look to their skin and the whites of their eyes. To deal with how scary it looked, we used to pretend that they were relaxing on the beach. They had to wear funny looking, foil-like sunglasses. Pretending they were a world away, in the Caribbean, enjoying a snooze on the beach made us laugh, even for a second. Jackson had a pneumothorax that required bedside surgery. A pneumothorax is a collapsed lung / accumulation of trapped air. I happened to be alone in my hospital room when the neonatologist came in to tell me that Jackson had this and urgently needed surgery. I could barely understand her and had to have her repeat it again before I gave her permission to do the surgery, signed the papers, and called family members. This sounded really scary to us, and although it was immediately necessary, it was something that was almost routine for the doctors who take care of preemies all day. He was put on a ventilator, which absolutely broke me down to see, but it helped him to relax, as the machine did all the breathing for him. They did chest x-rays and inserted a small tube into Jackson’s chest (it kind of looked like a thick milkshake straw) and that tube helped the air escape from where it shouldn’t have been. It was left in for a few days until his doctors were positive that they had gotten everything out, and was then removed. He still has a small scar on him, and it is my favorite part of him to kiss. It is his battle wound and he won the battle.

Both boys also had apnea and bradycardia events. This meant that they would basically stop breathing and because of that, their little heart beats would slow way down. Their monitors would beep away, alerting us and the nurses / doctors that it was happening. Sometimes at night, I still hear the beeps from the monitors going off in my head. These “episodes” usually lasted about 15-20 seconds each, and would be corrected by the nurses moving them around, undressing them, smacking their feet, etc. At one point, near day 9 or 10 in the NICU, we were told that Joseph was doing well and that he would be able to come home. As if on cue, he had a brady episode, so he was not able to leave with us. We still think that he refused to leave without his twin and this was his way of ensuring that wouldn’t happen. As it turned out, we got to bring both of our boys home on day 11. Together.

The boys had a host of other “minor” issues that were directly related to being premature, but we tackled each one of them head on as they came up. We followed up with a few specialists once we left the NICU and are now at the point where the boys see their pediatrician for their well visit once a year. They also have an ENT who they see because of complications that cause them to easily get croup, but we think we are nearing the point where that decreases. Time will tell.

Having my two sons born so early and in the NUCU was the hardest thing I have ever had to deal with. It was painful to watch them struggle. It was painful to know that they were hurting and not being allowed to pick them up and snuggle them. We were not able to hold them for days, and while I know this was medically necessary, it was still very upsetting and almost made me lose my mind. I carried them inside me for 34 weeks and then could only watch them through a plastic box. I felt like a spectator in their lives and had to rely on the doctors and nurses for knowing what they needed and when they needed it. However, I was never so thankful for their profession. The nurses and doctors took care of our sick children and loved on them like they were their own. They changed them and fed them when we were not there. They hugged them and sang to them. They called from their scheduled vacations to check on their progress. They cried with us when we were able to go home as a family of five. They were so supportive and compassionate and I will never adequately find the words to thank them, although I have tried numerous times. NICU doctors and nurses are incredible people are true heroes in this world. As painful as it is to write out, I can easily say that my sons would not be around today if it weren’t for these amazing people.

Here are a few “Dos and Don’ts” that were compiled by us, and a group of friends who also had preemies.

DO – Wash your hands every single time you enter the NICU / house. You should not pick up a preemie without making sure your hands are clean. They already have compromised immune systems and do not need “extra germs.” We had to pay hundreds of dollars for each boy, for a three month time period, for a shot the boys needed to keep them healthy and protect them from RSV. Insurance wouldn’t cover more than three months and their pulmonologist really thought they would benefit from six months. People not wanting to use hand sanitizer after we are voluntarily paying to stick our newborns to keep them healthy was just insulting.

DO NOT – Come over to visit if you even think you are sick. Again, germs are not good for little fighting bodies.

DO – Offer to bring meals, grocery shop, etc. Even if the parents don’t take you up on the offer right away, it means the world to them to know that you are there to help.

DO NOT – Show up unannounced. This is not meant to be mean, but when bringing home new babies (or a baby), it is a tough enough transition to begin with. When you add in the fact that they are sick preemies, it is often better for the parents to plan. Also, they will probably be really angry if they had just managed to get three kids to sleep and you ring their doorbell.

DO – Text, call, and ask how they are doing. Caring for sick newborns is scary and seems isolating to the parents. Check in on them and let them know that you care. Let them know that you are thinking of them.

DO NOT – Shy away from the parents because you don’t know what to say. Sometimes just talking and having normal conversation will brighten up their day.

DO – Ask questions. It is okay, really. If you want to know what the tubes, scars, etc. are, just ask. I, personally, would rather you ask a question instead of just assuming. I don’t mind explaining.

DO NOT – Choose this time to talk about serious, / non-life threatening matters. Trust me, parents of preemies have enough on their plates. This is not the time to hash out unresolved family drama.

Todd and I went through the scariest time of our lives when Jackson and Joseph were born and being treated in the NICU. We will forever be thankful for the people who made this time easier for us. My parents were (and still are) an invaluable source of help and support. Our friends, checking in with us, sending gifts, visiting, etc., helped to keep us sane. The group of moms of multiples friends I have online helped me get through this. I consider some of those women my best friends and could not have done this as gracefully without their support and encouragement.

I am happy to answer any questions you may have about prematurity. I am not an expert, nor am I a medical professional, but I have been down that road. To all preemie parents, know that it gets better. Keep your heads up. You can contact me via blog post or at twinsandtiaras@gmail.com

I am including just a few pictures from their NICU stay because the rest of them are still too difficult for me to even look at. I hate thinking of them that way and am so thankful that they are big and strong today!