LK was my third preemie. She sent me on a wild ride compared to the other two. At 24 weeks, I was already being tracked every week by the Maternal Fetal Medicine doctors. She was already small and showing issues with her umbilical cord flow. My placenta was mostly dead. I was told that at any given point, I may go from an ultrasound to admission. Sure enough, at 25 weeks I was admitted into the hospital because her cord flow was so bad. When they do the ultrasounds, they are looking at the flow from the placenta, through the umbilical cord and into the baby. Her was showing intermittent stopping at this point. Typically, within a week of intermittent stopping it stops completely and then reverses the flow, so the nutrients flow from baby to mom, rather than from mom to baby. I was given my first round of steroid shots to boost her lung development in anticipation of having her extremely early. Her cord flow stabilized after this first round, which they call the “steroid honeymoon”. However, they did not get worse. She remained intermittent for far longer than we all thought possible. Every morning, I was sent to ultrasound to check on her. I was not allowed to eat after midnight in case we had to have a C-section after the ultrasound. After the ultrasound, I would have a one hour non-stress test, where they hook me up to the baby monitor to watch her heart beat and check her reactions. I was given my second round of steroids at 26 weeks. Our goal started small, to make it to 27 weeks. At 27 weeks, her risk of having a brain bleed was significantly reduced. Once we passed 27 weeks (to everyone’s amazement) our goal was 32 weeks, where her risk of brain bleed would drop to almost 0. At 31 weeks, I was released from the hospital, still pregnant. No one could figure it out. Her cord flow was awful, but was not reversing! It was a miracle. I was told I would be allowed to carry her to 36 weeks as long as she continued to be stable, with checks being done three times a week. At my first appointment, her cord flow was a little worse, so I was only allowed to carry her to 35 weeks.
At 35 weeks 1 day gestation, LK joined our family at 3 lbs 15 oz. She came out very blue, and was immediately put on a respirator. However, she was here! And she made it much longer than we thought possible. She spent 11 days in the Neonatal Intensive Care Unit (NICU) where she underwent treatment for jaundice and breathing difficulties. She came home on oxygen, and stayed on it for almost 3 months. After her discharge, she did have challenges growing steadily and was diagnosed as Failure to Thrive (FTT). She was put on a high calorie preemie formula to boost her growth and intake. She started to thrive, and we were able to drop the FTT diagnosis.
At 6 months old, LK contracted RSV, a brutal respiratory virus that tends to attack preemies and immunocompromised kiddos. She was admitted into the hospital for breathing support and medications. She was in an isolation room, so all nurses and doctors had to be fully gowned, gloved, and masked in order to come into the room. That was a very rough week. While we were there, she was assessed by the pediatric Occupational Therapist, who noticed that she was still using preemie sized nipples to eat. A swallow study was ordered, and it showed that she struggled with her eating patterns. The typical pattern is suck, swallow, breathe. LK would suck, suck, suck, suck, then hold it for a few, then swallow and breathe. This led to a high risk of aspiration, where her formula would go into her lungs rather than her belly. The Occupational Therapist also noted that she was showing weakness in her muscles. After her discharge, she began occupational and physical therapy, as well as feeding therapy. She graduated from OT and feeding therapy when she was around 18 months old, and graduated from physical therapy at 2 1/2 years old. She’s come a long way!
Just after her first birthday, LK started showing signs of severe constipation. Nothing we gave her helped her, and she would often shriek in pain. We were waiting on a referral to a pediatric gastroenterologist for this problem. However, she suddenly started having severe diarrhea. At the same time, there was a virus running through the house, so we figured it was just showing itself different in her. We were concerned about strep, so her doctor put her on a broad spectrum antibiotic. Within two days, she showed significant decline. Her diarrhea was worse, her misery was worse, and we could not figure out what was wrong. After many blood tests and stool tests, she was diagnosed with c diff. C diff is a bacteria in poop that can cause the body to not absorb nutrients properly, and just wreaks havoc on the body in general. It is often caused by antibiotic use. Unfortunately, it is treated with antibiotics. It felt like a catch 22 for us. The first round of antibiotics did not help at all. We started a second round, and it also did not help. Eventually she qualified for a fecal matter transplant (FMT). She had to go back on antibiotics prior to the transplant. The gist of what they did was put a nasogastric (NG) tube down her nose into her belly. The doctors have donated stool that is free of all disease and bad bacteria, basically sterile, that they push through the tube with a syringe. Her body then takes the donated stool and as it passes through her GI tract it gives her body the positive gut flora to start her system on the path to healthy. We noticed a difference within 2 days. It was incredible!
After her bout with c diff, we went back to her chronic constipation challenges. This led us back to the GI doctor, who prescribed Miralax. However, as I am not overly comfortable giving my young daughter medication just to make it through her day, we found that giving her a cup of 1/2 apple juice 1/2 water would help loosen her system up (this did not work before the c diff hit, but works wonders now). She is doing great.
She recently underwent an eye surgery because her tear ducts have been clogged since birth. This clogging often led to her eyelids becoming “glued” shut with gunk, and she lost a lot of eyelashes when getting her eye reopened. The ophthalmologist probed the tear ducts to push the gunk out, and then inserted tubes (like tubes kids get in their ears) to open up her tear ducts. In 3 months, those tubes will be removed.
Prematurity effects all kids differently. Even after my third preemie, I am still caught off guard by the long term challenges they each face. Some have required a lifestyle change, some require constant monitoring, and some I know they will outgrow in time. It is a tough rough, but my kids are worth it. They remind me to face my challenges head on, and to not back down.