According to the March of Dimes, 1 in 9 babies is born Premature. Being born Premature is not simply just being born early. It is often accompanied by being very small and very sick. In honor of Premature Birth Awareness Month, I wanted to talk to you about a couple of serious conditions that are very common with a Premature Birth. Theses conditions are very scary, can be life-threatening, and can require surgery. Unfortunately, we have had experience with them when my twin boys were in the hospital in the NICU (Neonatal Intensive Care Unit.)
As most of you know, my Identical Twins were born at 25 weeks, 5 days, which is almost 15 weeks early. My boys were the smallest and sickest in the hospital at the time they were born.
About a week after he was born, they found a heart murmur in my bigger guy. I refer to him as my bigger guy because he was 2lbs 2oz at birth, a whole whopping 11oz bigger than his brother.
The heart murmur was caused by his PDA not closing at birth. PDA stands for Patent Ductus Arteriosus and according to the National Heart, Lung, and Blood Institute,
Patent ductus arteriosus (PDA) is a heart problem that affects some babies soon after birth. In PDA, abnormal blood flow occurs between two of the major arteries connected to the heart. These arteries are the aorta and the pulmonary (PULL-mun-ary) artery.Before birth, these arteries are connected by a blood vessel called the ductus arteriosus. This blood vessel is a vital part of fetal blood circulation. Within minutes or up to a few days after birth, the ductus arteriosus closes. This change is normal in newborns. In some babies, however, the ductus arteriosus remains open (patent). The opening allows oxygen-rich blood from the aorta to mix with oxygen-poor blood from the pulmonary artery. This can strain the heart and increase blood pressure in the lung arteries.
So, in order to get him healthy and able to eat, a heart surgeon had to come in and close his PDA. Surgery on a baby is scary, but surgery on my 2lb, 25 weeker baby was absolutely terrifying.
I remember the nurse telling us to be there at a certain time. Did we want to baptize him first just in case? He didn’t even have a name at that point. After a brief discussion, me and my husband finalized their names. They would do the surgery right at his bedside, and it would actually take longer to set up and sterilize the area than the surgery. Somehow, this did not make me feel any better.
The doctor came from another hospital, and was “the best” at this procedure. He came and spoke to me, my husband, and my mom, saying he would do his best, but because he was so small, he made no guarantees. We then sat in the waiting room in silence. I still remember praying as the tears streamed down my cheeks.
After I couldn’t take sitting any longer, I paced the hallways, trying to get a glimpse into the room where the surgery was taking place. I wasn’t sure if it was better or worse to be able to see what was going on. I could see some of the people who had set up the room, and then I saw the most beautiful thing. One of the guys gave me a thumbs up. I wasn’t exactly sure, but I guessed this meant the surgery went well. I just felt relief.
The surgery did go well, and now my big guy has a cool looking scar to show how strong he was/is. After that surgery, he still had to work on breathing on his own, gaining weight, and getting the blood vessels in his eyes to vascularize (I’m still not sure what that means,) but he did soooooo much better. That open PDA really made his little body work hard, and with everything working normally, he was on the road to getting home.
As I mentioned, there is another, even more deadly problem that many preemies experience. My little guy did not have the PDA problem, thank goodness, but he had the other nightmare of a problem, NEC, or Necrotizing Enterocoloitis.
According to kidshealth.org,
Necrotizing” means the death of tissue, “entero” refers to the small intestine, “colo” to the large intestine, and “itis” means inflammation…A gastrointestinal disease that mostly affects premature infants, NEC involves infection and inflammation that causes destruction of the bowel (intestine) or part of the bowel.
My poor baby’s tummy was so dark purple/black. The doctor told me that this problem was solved in 1 of 3 ways. A third of babies with NEC will respond to antibiotics, while another third need the area cleaned out and drained with minor surgery. The last third need a more invasive surgery, where parts of the intestines are removed.
My little guy was too little for the third kind of surgery, so we prayed that antibiotics would work. When that didn’t seem to be happening, they got another specialist to come and perform the drain. Again, they did it right at his bedside and had him sedated. If this didn’t work, they would have to hope it would at least buy him time to get bigger until they could perform the surgery…at another, bigger hospital. Luckily, we never had to get to that point because the drain worked.
My little guy had a bit of a rougher road in the NICU. He did not gain weight quite as easily, and had a hard time getting off the ventilator. They had to give him some steroids, which come with all sorts of lovely side effects, and they prepared us that he wouldn’t be coming home around the same time as his brother.
He also had ROP, as I talked about in another POST. The laser surgery he had would cause him to lose his peripheral vision, but it was either that or blindness. Although it seemed like bad news on top of bad news at the time, whatever they gave him to prepare for the surgery seemed to help him finally get off the ventilator. I think he was so mad he had to be intubated again, he decided no more tubes for me! Seriously though, he really was mad after the surgery. The nurse tried to give him a pacifier and he just screamed and threw it across his incubator. After they were able to extubate him, he figured out this breathing thing that we all take for granted, and was on the road home. He only ended up staying in the NICU for an extra day and a half!
So, on August 3rd of 2012, I had my whole family back together. It still sometimes seems unreal to me. From the perinatologist telling us my little guy would never be big enough to be viable, to the neonatologist explaining the percentages of how many babies actually make it home if they are born that early (I don’t remember exactly…I think I was blocking it out) to now having two healthy 3-year-old beautiful boys. I just have to pinch myself most days. It also helps this sleep deprived momma keep awake. Kidding. No, I’m not.
Please share this post to spread awareness on Premature Birth. Don’t forget to post your Purple on my Facebook Page from now until November 15th and you will be featured in my November 17th Blog Post! #PurpleforPreemies