NICU: Luna’s Journey
Updated: Dec 6, 2019
Luna Raquel, Baby A.
Luna was born on September 27th, 2018 at 9:12pm after being without her waters for 4 days. She came out weighting 410g, 11inch long. We picked Luna’s name (which means moon in Spanish) based on her temperment in the belly. She was always such a calm baby and Id often have to use the doppler to make sure she was alright. Her middle name is Raquel which is my oldest sister in laws name.
Luna’s NICU journey was hard from the 2nd day she was born. She had to be put on the highest ventilation machines London had (the jet) she struggled really bad with stabilizing her sugar. She also had major belly and digestive issues that caused her not to pass a bowel movement successfully for 40+ days (which also caused her not to eat) at one time she had 11 IV’s hooked up. Luna needed 22 blood and platelet transfusion. I remember telling my husband all the time “how do we cope if we lose her?“ and I found myself trying to prepare for the loss of my first born daughter. I would find myself distancing myself from her as if I was trying to prepare myself for the loss of her. I spent hours and days crying over the fact that I failed Luna. The fact that she was in an isolate, weighing less than a pound fighting for her life.
Then one of the hardest days came. I got a call to come to the NICU. When I got there I was told Luna developed an infection on the back of her neck. The infection had eaten away at her flesh so deeply you could see her muscle. As I type this and close my eyes I can picture her wound. I met with the infectious Dr’s who told me the infection she had contracted is extremely dangerous and if it wasn’t caught in time (we didn’t know if it had been) that it starts to eat away at the major organs, starting with the brain. Gut punch. They started Luna on antibiotics right away and we just had to wait and see what would happen and pray she’d respond well to the antibiotics and that we caught the infection in time. Luna went septic twice (infection in the blood) struggled with a PDA (that closed on its own) and had a grade 1-2 brain bleed that self resolved.
Day 40 was a big changing point for Luna. Her edema (swelling) finally started to come down, she started having bowel movements (thanks to the plastics team) she started eating my breast milk, her sugars finally stabilized (bye bye insulin) and her infection started to clear up. She has a pretty big scar on the back of her neck from the infection.
Day 41 Luna started showing signs she was ready to move onto a lower ventilating system. This came as a huge shock because a few weeks prior we were talking about her becoming vent depended and maybe needing a trache in the long run. She was moved from the jet down to the conventional vent. Day 42 sue started showing signs she was ready to be extubated and day 43 she was successfully extubated to CPAP.
A few days later Luna became a “grow and feed” preemie. Meaning she was there just to grow, feed and come home. Wow! How did we get to that point? I went from fears of losing her daily to God showing me to lean on Him and trust that He writes the most beautiful stories. Luna is the definition of strength, survivor, warrior.
We we’re finally back in Windsor where the journey became uneventful. Luna grew and kept hitting milestones,
like coming off of cpap to high flow and eventually low flow. She came out of her isolate and into a crib. She started wearing baby clothes and taking bottles.
Day 115 I brought my first born daughter home. My warrior princess. Luna came home at 38.5 weeks gestational and she weighed 5lb 11oz. Luna came home with low flow oxygen and an NGTube. She was able to get her NGtube taken out after 2 weeks being home and she became oxygen free after 21 days. Luna is now a “typical” newborn baby who loves cuddles and hates getting her diaper changed.
God, you are so wonderful. I thank you for always having your hands on Luna and making her story so beautiful!
410g dropped to 370g
22 blood transfusion
Grade 1-2 brain bleed
Deadly fungal infection
40 days on antibiotics
40 days on pain management (fentanyl)
41 days on the jet ventilator
74 days of oxygen support
125 days NG feeding tube
Eye surgery x2
50+ blood draws
Xrays + ultrasounds
115 day hospital stay
Chronic lung diagnosis
We want to thank London Health Science Center who fought alongside of us for the girls lives. They weren’t sure the impossible was possible but it was. We are so thankful for the girls Drs and nurses who put so much into caring for the girls. For the nurses and Drs who cried with us, prayed with us and never gave up on the twins. We can never repay you all for saying “yes, we’ll try!” when everyone else was saying no!