Our start with Malaya was completely unimaginable, we didn’t have her. Many of you don’t know the full story of Malaya’s beginning… it’s a complex one. Unfortunately without knowing of the syndrome and that our baby girl was having problems while I was pregnant, I gave birth to Malaya naturally (the pict of her abdomen should show that as women we are capable of MUCH when God is with us!) My water broke at 37 weeks and I lost a ton of amniotic fluid, that was tinged a green color (we later learned was bile)
Malaya is our second baby. We have a two year old, boy, named Kai. Kai was born naturally as well and is completely healthy. I was completely thrilled our little family was going to be complete with a baby girl in it! … I’ve been outnumbered with two male cats, Bryn and Kai! Bryn and I laugh now as to how nervous we were at the thought of raising a girl – a teenage girl in this world! The nervousness changed really quick.
Back to her birth story…
everything from time of my water breaking to delivery happened so quickly (4.5 hours to be exact) Through the delivery process We lost Malaya’s heart rate after her head was delivered, from there My amazing midwives, myself (adrenaline & mommy instincts) and Bryn did everything to deliver Malaya in six minutes from that time. She was intubated after being without oxygen for about fifteen minutes and taken to the NICU at York Hospital in PA. Thanks to discoveries in the last fifteen years, Malaya was given hypothermia therapy, to cool her body’s core temp down to about 92 degrees to keep her organs from receiving further damage. She was on this for 72 hours and then slowly “warmed” back to normal temp. These first five days were the scariest of our lives I think, scarier than learning her diagnosis. There were so many unknowns. Unknowns of what was happening to her internally, unknowns of possible brain injury, how long would she be with us and so so much more. She wasn’t passing anything, didn’t have bowel sounds and because of the excessive fluid on her abdomen the docs couldn’t get a clear picture of her internal structures. We can’t thank the NICU team of nurses at York Hospital. They lifted our spirits and truly cared for our baby girl and family. We fell in love.
Malaya was then transferred to PSU Hershey Medical Center, NICU, at Day 5 and spent 3 weeks there until transferred to the PIMCU. Her breathing tube came out at day 5 and was put on Cpap and then eventually wall canula. While in the NICU we learned of her intestinal malrotation, which was corrected and a GTube was placed. Malaya has still never eaten by mouth due to no movement of her intestines. At day 9 she received her first surgery and by day 12 we learned of her diagnosis. Mmihs? Mm.. what? Microcolon, Megacystic, Intestinal hypoparalysis Syndrome. Mouth full. But when we saw images from the studies done, it all clicked. And as weird as it sounds there was a sense of relief that came over us. At least we had answers and could move forward and pivot to our new normal. Once we learned her diagnosis, I actually reached out to a family that was in the same state and had same situation as us in the every day home life. We are forever grateful to them. We got a “fly on the wall” experience because they welcomed us into their home and we got a glance as to what life would look like after the hospital.
Over the weeks in the hospital we tried to balance the life of parents of a two year old, jobs and learning Malaya’s care. Her central line, broviac, was placed just after Malaya turned a month old. This is how she will receive nutrients long term. That was super intimidating. Because of needing to become a mommy-nurse in 3 weeks, I went from being the most prominent person in Kai’s life to the least. I remember just climbing into his crib at times just to be with him because I hadn’t seen him for days. This all sucks. We have powered through though. This is our life. This is our story. The more I tell our story the more it becomes real life. Like you hear these crazy stories, but then it becomes your story. Your day to day reality.
Malaya came home at 7 weeks old and she is now four months ? what a whirlwind. We were home with her and unfortunately due to needing more home oxygen support and her stats not holding we went back into the hospital. Because her lungs were already compromised, she had a vagal response when being cathed, which lead to a twelve day intubation in the PICU and waaay too much sedation meds. She is finally home after another six week hospital stay. She is stronger than ever but we are still awaiting Omegaven, which is essential in preserving Malaya’s liver.
My heart is overjoyed to see the love and bond between her and Kai and Malaya’s social ability! These days can be very trying for bryn and I. Some days you aren’t sure you are going to make it through with your sanity intact but I couldn’t imagine going through this without a strong partner. God has blessed it for such a situation as this ??? and we are beyond BLESSED AND GRATEFUL to be experiencing our baby girl as a family one day at a time.
Without the support of family, friends, our extended networks, prayers, prayers , God and more God I have no clue how we would have made it through as gracefully as we did.
“You made all the delicate, inner parts of my body and knit me together in my mother’s womb.
Thank you for making me so wonderfully complex! Your workmanship is marvelous—how well I know it.”
??Psalms? ?139:13-14? ?NLT??
Join Miracles for Malaya to follow her journey and show your support by visiting her YouCaring page.