On September 6, 2014 at 24.1 weeks pregnant, I went to the hospital feeling sick thinking I had the flu. It was not the flu; I was very sick due to an infection around the baby. When they told me Laila was going to be born I expected the worst.
All the doctors were called in; my obstetrician, the neonatal team, as well as the neonatal transport team because our hospital was unable to care for babies as small as Laila. My husband, not really understanding what was going on, asked the nurse if Laila was coming now. She said yes and I immediately fell apart. I started seeing so many people come in to set up for the delivery. This was supposed to be the happiest time of our lives, but instead we were both so scared. I am a labor and delivery nurse at the same hospital and I saw the faces of my co-workers who are normally so happy and cheerful also looking concerned for us. Once the entire team was there Laila was born weighing only 1lb 6oz, 12 inches and her eyes were still fused shut.
This was 111 days (4 months) before she was supposed to have been born. Due to Laila’s severe prematurity, her lungs were not developed and she was unable to breath on her own. They had repeatedly tried to intubate her, but they were unsuccessful. They came to my husband and I to discuss our options. All I could do is cry and beg the neonatal nurse practitioner (NNP) to save her. Eventually they were able to intubate her.
Then, very abruptly, due to the severe weather that had moved into Phoenix, the neonatal transport team told the doctor and NNP they had 5 minutes to prep Laila or they would have to leave without her. There was much more that was needed to be done to stabilize Laila. In order for Laila to be transported to a hospital that could properly care for her, they were unable to do anything else but send her. Laila was taken by helicopter to St Joseph’s Hospital in Phoenix where she spent 115 days.
There were so many people who cared for Laila while she was in the NICU. She had heart surgery at 18 days, she had 2 brain bleeds; grade 4 and grade 2, and she was not able to breathe on her own for the first 60 days. Laila also had multiple blood transfusions and had to fight off infection. Due to an oral eversion, Laila stopped taking a bottle and eating at 9 months of age. Laila has completed an intensive feeding program were she now receives almost 30% of her daily nutrition by G-tube.
Laila must be watched very closely because she aspirates thin liquids. She is unable to drink like most toddlers. If she was to pick up a drink and swallow it she essentially could drown due to the aspiration. Through Vital-Stim therapy we were able to strengthen the muscle in her throat allowing her to swallow without aspirating some liquids.
The next step in Laila’s journey is to continue weekly physical therapy to get her stronger. We still face many health challenges today, but through it all, Laila has always been the happiest little girl.
Recently Laila was a flower girl in her NICU nurses wedding. When you have a micro-preemie it takes many people to get through the changes and you develop a bond like no other.
We encourage each and every one of you to invite one additional person to join us for our virtual March for Babies Phoenix......... #bringonemore