September’s NICU family feature is written by a woman that I met through our infant loss support group. It’s hard to believe that just over a year ago, we hadn’t even met and this last year we have been through so much together. We feel so blessed to have met Keith and Claire, and are honored that they are sharing their story here. Isaac is their baby born after they experienced multiple losses, so he is a true miracle baby.
My name is Claire Matejka. Keith and I had been married six years before we finally decided to start a family. In February 2009, our first pregnancy ended in a miscarriage at just eight weeks. It was caused by a uterine abnormality. After surgery to “repair” my uterus, we spontaneously conceived twins in September of that same year. We could not be happier and really thought that even though twins were higher risk, everything would be fine. The entire pregnancy was a rollercoaster and ended February 17, 2010 at 22 weeks 6 days with the stillbirths of James Keith and Sophia Jewell. At their birth I told Keith that I could never do it again: my heart was broken. However, just a few months later, we decided they would want us to try again and we conceived Isaac in July 2010.
The entire pregnancy was a nail-biting experience, but we felt we were well-prepared for it. I had a transabdominal cerclage placed at 10 weeks gestation. The doctors thought that it would help me carry the baby to full term. On November 1 (at 16 weeks), I was preventatively put on what the doctors called “couch potato” rest and began P17 injections (progesterone shots given to women with risk for preterm labor). Then, on January 5, 2011 (at 25 weeks), I went into preterm labor and I went on hospital bed rest. While in the hospital we had several visits from NICU staff at our request to discuss the baby’s outlook. At first it was grim, but as the weeks went on, there became more and more hope. When we reached 27 weeks, the NICU nurse assured us that 27 weekers do amazing in the NICU and that we should breathe a little easier. By 31 weeks, I had had over a week of no scares and I was sent home to continue my bed rest. At 33 weeks and 1 day, I went into preterm labor again and this time the doctors could not stop it. Isaac Thomas was delivered via c-section at 2:17am on March 1, 2011. He weighed 4 lb 6.5 oz and was 17 inches long. One third of his placenta had already detached and meconium was present at birth so he was not stimulated to breathe until they were sure his air passages were clear. He used only a few minutes of oxygen and was on room air before he even arrived in the NICU.
Going to the NICU is often the last thing on an expectant mother and father’s agenda. For us however, we were not only anticipating it, we were expecting it. I was thankful to have read The Premature Baby Book (a gift from friend and Mikayla and Chase’s mommy, Melissa Terrill, while I was on hospital bed rest). The book, combined with the information from frequent visits from NICU nurses, prepared us for what we would see. We also visited the unit before Isaac was born, so we were not surprised when we peered into an isolette for the first time to see Isaac. Nothing can really prepare you for seeing your helpless little baby in the NICU, but it can at least educate you on what is happening and make it easier for you to ask questions and communicate with doctors and nurses.
Isaac was what they classified as a feeder/grower. He was very healthy from the get-go. Essentially, he needed to get bigger and stronger before he could go home. That does not mean there were not a few anxious moments though. Preemies often have what they call “spells.” They just forget to breath!?! Reading about them in a book and having it happen to your baby are very different experiences. Every time we went in to see him, we would ask about his progress and weight and a few times we were told about the spells. It is a very scary event for a parent and you can’t help but wonder what would happen to him at home if that happened. There were several criteria for being discharged from the NICU and being spell free for 5 days was one of them. The day before Isaac’s discharge he had a spell, but it self-resolved, meaning he stopped breathing, but then began again on his own without the stimulation of the nurses. This did not count against the criteria of 5 days spell free before discharge. As he seemed to get closer to discharge, a new anxiety consumed me…what if he wasn’t ready? What if they sent him home and he had a spell and then he… There again, is nothing that can prepare you for bringing your preemie home, not a book or a convincing nurse or doctor. Nothing.
Feedings were stressful. I tried nursing, but he was often too tired and required all or part of his feedings by gavage tube. Feeding your baby through a tube is a heart-breaking experience and it was very difficult for Keith and me at first. Eventually, we became accustomed to attaching the syringe, completing the feeding and then clearing the tube and closing it afterwards. We know that we were still bonding, just not the kind of bonding we thought we would be doing with our newborn. Each feeding would begin with us taking his temperature under his arm and changing his diaper. Feedings seemed to take a long time by bottle. It would just wear him out and he was often sleeping by end of it. By tube it was slow too because you never wanted to go too fast and upset his stomach. We would expel a few cc’s and then wait a few minutes before giving him more. We wanted him to eat as much as possible. He had dropped weight within the first week to only 4 pounds. Burping a preemie is also a unique experience. It was awkward and unnatural. We would sit him on out lap and lean him forward so his neck cradled between our thumb and first finger. Then pat him on the back or rub up on his back in a pretty forceful way which just seemed too aggressive for his little frame. I would have objected to this but he really seemed to enjoy it!
We learned to change our first diapers and dress him through the portals of the isolette. He was in an isolette for at least the first ten days while he was under the bili lights to reduce his jaundice. It is so hard when all you want to do is hold him and the only time we could take him out was for feedings. When we did take him out, he was dressed in a onesie and sleeper that were often enormous on him, even through they were newborn size. He was then wrapped in a receiving blanket like a little burrito. Once his jaundice was resolved, he stayed in the isolette until he learned to regulate his own body temperature. They slowly reduced the temperature of the isolette until it was at room temperature and then he was moved to a crib. The crib was pretty much the same type that full-term babies use in the nursery. It was amazing to walk in and be able to see him and touch him and pick him up when ever we wanted to. Finally.
We wanted to share him with the world. He was allowed to have four people by his bed side at any time. One had to be a parent. Each visitor would have to enter the unit through a secure door, wash hands with soap and water and then use alcohol based hand sanitizer. I will never forget the distinct smell of the brand they use. From there, we all would stop at the nurses station and have to vow that we were not sick, had not been around anyone sick, etc. Then you would get a color coded sticker to wear for the day to let the NICU staff know you were “cleared.” We had a few family and friends come to visit him but it was often scary for them. We would try to prepare them, and often be able to show them pictures of him ahead of time, but even so it was hard for people to see him with all the monitors on him.
It may have only been a 17 day stay in the NICU, but it was 17 days too long. It was exhausting. I would get up in the morning to be there for his 9:30 feeding and stay for a few hours. Then I would go home and try to rest since I was, after all, recovering from a c-section. Then Keith and I would go back every night for his 6:30 feeding and stay another couple of hours. All you really want is to stay there the whole time, but he really needed to sleep and grow and not have people man-handling him unnecessarily. It was really an emotional rollercoaster. We are so grateful for the wonderful care he received, but we couldn’t wait to get him home.
We are in love. He is the most amazing little miracle delivered by the two most beautiful angels…