Micropreemies in the NICU--Riley's story

Riley, the youngest of the trio, was a true fighter from the very beginning! Riley and Makena were always very close in weight, but for quite a while Riley was the smallest, yet that didn't stop her from getting her way! Looking back in my journal, I had noted on 9/8/05, that her nurse called her "a little pistol." She was the first baby to be taken off of the ventilator, after she kept pulling at the ET tube that was in her throat (see the picture below of Riley on the ventilator). On 9/15/05, she was taken off the ventilator after 24 days.
Our neonatologist jokingly said, "I didn't know what else to do with her!"

Riley was the first of the group who required a blood transfusion, at 2 days old. She required a 2nd blood transfusion about a week later. Riley also underwent the PDA ligation surgery on 8/25/05 to close a blood vessel on the outside of her heart. She made it through the surgery without complications. Riley had her first head ultrasound on 8/24/05 to determine if she had suffered from a brain hemorrhage after she was born. Fortunately, like her sister, the ultrasound was clear. Her 2nd ultrasound a week later was also clear. We were very fortunate.

9/9/05

Riley weighed only 1 pound, 8 ounces in this picture, but was already showing her feisty attitude in the NICU. Her special preemie-sized diaper was a little bigger than a dollar bill and was still quite loose on her.

9/19/05: 4 weeks old, weighed 1 pound 11 ounces

She was small, but mighty!

For the first 8-10 weeks, the girls were in individual covered isolettes that had heaters inside to keep them warm. The babies had "buntings" which were soft material on the bottom with 2 large straps that came across the top to keep the baby strapped in (see the photo above). Riley was small, but she managed to find ways to escape her bunting. When she was on her tummy, she would stretch out the legs and push herself off the bottom of the isolette. More than once she was found on her side or completely flipped over onto her back. I think she was trying to escape and come home!!!

During the early days in the NICU, it was important for the babies to have a quiet environment and get as much rest as possible. SO the babies were on a schedule from the very beginning. Every 3 hours, they would have their temperature taken, their diaper changed and feedings given through a gavage tube. Their head and body positioning was also changed so that they were not always laying in the same position. This was our opportunity to help with their daily care. The nurses were very accommodating to us and helped teach us how to handle a baby who was so small and fragile. The girls' cares were scheduled at different hours so that we could help with each baby.

9/20/05

This was the first time I was able to hold Riley.
She was 4 weeks old.

Riley was only able to tolerate me holding her for about 5 minutes.

When the babies were so small and unable to regulate their own body temperature, we would hold them skin-to skin to help keep them warm. This is called "kangaroo care." At first, we were only able to hold them for short periods of time, as the babies would become cold or overstimulated. Holding the babies was my favorite part of the day. Steve was so nervous to hold the girls in the beginning and would often let me hold them instead. Once the girls were a little older and stronger, we would often take turns holding the babies.

8 weeks old

" Mom, I promise I am behaving myself when you aren't here."

Although Riley's lungs were the strongest, she still had MAJOR apnea spells where she would stop breathing. It seemed like the alarms on her monitors were ALWAYS ringing when we were there to alert the nurses that her heart rate or O2 levels had dropped too low. Riley had already shown her dislike for the ventilator tube and also hated the CPAP mask that delivered pressurized oxygen to her lungs. She tried to rip the mask off of her face when it was on her. The least invasive way to deliver oxygen to her was through a nasal cannula (see the picture above). However, if she had too many apnea spells, she would have to go from wearing the nasal cannula back to the CPAP mask. This always felt like a huge setback, but in the end she continued to progress and grew out of the apnea spells.

10/30/05
"Hmmmm....Daddy are you sure that I can't have my own room when I come home?"


10/30/05
Riley with daddy's football. She weighed 3 pounds, 7 ounces.


The love affair with the binky started very early.

100 days old

Once Riley positioned herself as the leader of the pack, we thought that she would be the first baby to come home. In early November, the doctors thought that she would be ready to come home by Thanksgiving. I was so excited to actually have a light at the end of the tunnel. Unfortunately, Riley had complications with the vascularization of her retina, which is another complication that many preemies face. Retinopathy of prematurity or ROP is a condition that can cause vision impairment in preemies because the retina is not fully developed in babies born so early. The girls were examined weekly by a pediatric opthamologist beginning in early October to see how their eyes were developing. The exams occurred every Tuesday morning. This came to be one of my most dreaded events every week. The first 3 exams indicated that the blood vessels in Riley's eyes were developing pretty normal, but she did have some abnormal growth. On 11/15/05, her fourth eye exam, showed that she had developed Stage 3 (Stage 5 being the worst) ROP in both eyes and that she may have to have laser eye surgery to prevent the condition from worsening. We were told that she would need to be re-examined the following week. So our roller coaster ride continued. It was no longer a possibility that Riley would be home for Thanksgiving because they needed to keep her in the NICU in case she required eye surgery. We were terrified of having to put her through eye surgery, which basically burns the periphery of the retina to stop the abnormal blood vessel growth. The negative side effect being that the peripheral vision is lost, but hopefully saving the central vision. Riley had to endure another 2 or 3 weekly exams in the NICU, and each week she was was borderline for laser surgery, but didn't quite meet the criteria. We were very lucky to have an experienced pediatric opthamologist working with us who was not too aggressive in jumping into treatment. Steve and I chose to wait it out each week hoping that the abnormal blood vessel growth in her eyes would not get worse. Our prayers worked and Riley did not require surgery in the end.

Riley's carseat challenge. She looks like she is practicing for the roller coaster rides at Disneyland!

Another "test" the girls had to pass in order to come home was the "carseat challenge." The girls were placed in their carseats for an hour while their O2 saturation and heart rate was monitored. If any of their numbers fell below a certain criteria, it meant they weren't yet ready to go home because the stress of the car seat/car ride could effect their breathing and heart rate. Riley was the first of the babies to take the test, and of course passed with flying colors. She was always trying to find ways to "one up" her sisters.

Riley was finally able to come home on 12/15/05, just 5 days after Makena. Riley was 115 days old and weighed 6 pounds, six ounces.

Riley napping at home!