November is Prematurity Awareness Month. RiverDog Prints supports one cause or charity a month and this one rests very close to home. I will be posting once a week in November, retelling my story of prematurity. I warn you before you read that some details are a bit graphic and personal, but anyone who has gone through this experience will know, that the details count for so much. You can support the March of Dimes by clicking the banner below, but first, read on for part four of my personal preemie story.
Yes, Eli spent 89 days in the NICU. The first few days are a vivid blur. Decisions had to made quickly and there was a tremendous amount of information to understand.
Eli’s challenge right from the get-go was RDS (respiratory distress syndrome) and apnea of prematurity (forgetting to breathe) . His lungs needed the chance to develop that they didn’t get in the 3rd trimester. One of the first things parents have to get used to in the NICU are the monitors hooked up to their babies. All the alarms and beeping create extreme tension, as the monitors signal your baby’s distress. You have to listen to an alarm going off as your child forgets to breathe. You have to suppress your panic and allow the calm nurse to come to the bedside. She will take care of your baby’s needs. You have to give up that control.
As with many preemies, Eli was born with a PDA (patent ductus arteriosus.) This is a fetal blood vessel near the heart that is supposed to close within the first few days of life. Born early, the vessel does not always close and can affect breathing and heart function. The PDA would need to be fixed with a strong medicine. And if that didn’t work, he would need surgery. Hard to imagine surgery on such a tiny body.
My husband and I bought two books for our own research and to preserve our sanity. Once I was released from the hospital, I would visit Eli daily. At night, after my 3-year-old tucked in bed, both my husband and I would read our Preemie books and talk about what was going on that day and what might be in the future. It was good to be informed and prepared for what may come.
Another issue was Eli’s IVH (intraventricular hemmorhage.) Simply stated, this is a brain bleed and they grade these for severity. Eli’s was a 2. Low on the scale of severity, I still found this problem to be the scariest one of all. A specialist does an unltrasound in the first week to see if there is an IVH and grades it. Then, you wait six weeks before you know if there was any damage they can detect. It could have long-lasting effects on Eli’s brain.
NEC (necrotizing enterocolitis) was a “wait and see” worry. This is an inflammation of the intestinal tract and can be very dangerous. Once the nurses started introducing breast milk to Eli through his NG tube, we had to see if his digestive system was ready and working properly. If it wasn’t, another possible surgery loomed. Eli was given the tiniest amount of food imaginable and the nurses would increase it with each feeding. People complain about diapers all the time (I’ve been guilty of that), but we were anxious and hoping for a dirty one.
One wonderful action we could take was Kangaroo Care or K-Care. Studies have shown that holding a preemie close to your heart, skin-on-skin, helps them heal and thrive like nothing else can. As soon as Eli was able to be removed from his isolette, he received K-Care from both my husband and myself every day.
As Eli started to take more breast milk, I had to make a decision about how to feed him. I struggled with this decision like no other concerning my children. I ultimately decided to bottle feed Eli my breast milk, instead of directly from me. This would enable us to add a fortified formula to my milk for increased weight gain, as well as a bit of rice cereal to help control his reflux. There was a pump set up for me right next to Eli’s bed. If you’re not familiar with breastfeeding, it is an emotional process. I don’t mean the vision of lovingly looking down at your child as you provide his sustenance. I’m talking about the emotional connection you have to make with the process, especially if you are going to pump. For your milk to let down, you have to have an emotional trigger. With my first child, I put his picture on my pump at work and that was all I needed. For Eli, my trigger was the sound of the pump. I cried about this, but just once. I cried because I couldn’t feed my child and I thought my emotional connection was to a machine. As I look back, my trigger may have been the sound of the pump, but my emotions were always tied to Eli.
Most babies have bilirubin or jaundice, which is the breakdown of excess red blood cells that they no longer need. Preemies need extra help to get rid of the excess cells. That’s why you see pictures of them under bright lights wearing funky sunglasses. Certain wavelengths of light will combat the jaundice. Once the excess red blood cells leave the body, there is a risk that preemies will not be able to create more at a fast enough rate. There was a span of time when Eli’s red blood count was so low, they considered transfusing him. The medical staff would rather not transfuse; they want the baby’s body to do create the cells on its own. It was a close call, but Eli rallied just in time.
Eli conquered each obstacle as it came. He was still on oxygen, but not all the time. He still struggled with apnea, but we had become used to our boy forgetting to breath. The nurses had always talked about Eli going home, almost right from the beginning. Now, they referenced it constantly. It sounded wonderful and frightening at the same time. We took a course in infant CPR to be prepared. We discussed whether we would take home a monitor or not. We started gathering our supplies of tiny bottles, tiny nipples, tiny everything. I had painted Eli’s room after I had recovered from the C-section. It was all swirly turquoise with little sailboats waiting for him. We just needed Eli to be ready.
