The following story can be triggering for some parents who are pregnant or presently in the Neonatal Intensive Care Unit (NICU), for this story ends in loss. Please know that it is okay to stop reading here, to choose to be gentle on yourself and reach out for support if needed.
This story was written with love by mama, Keila Perez.
Hello, my name is Keila Perez. I am a mother of 12 Kids, 7 kids are mine, 2 angel babies and 5 are my step kids. I am in a throuple relationship; two women and one man and we have been together for 5 years. When we decided to expand our family, we honestly didn’t think we would go through so many things. I never thought that I would have problems conceiving, given the fact that I was already a mother of 4 kids. I decided to see a specialist for my problems and he decided he wanted to do hysteroscopy. When we got the procedure done, he found polyps covering my fallopian tube. I started taking hormone medication for about a couple months and then I started having problems again. We decided to see a different specialist just to get a second opinion and the specialist recommended for me to get a laparoscopy and a hysteroscopy done. I went back to my original OB specialist and he decided to do the procedure. A couple days later we found out I had endometriosis and I was given anabiotics for two weeks straight. About a month later we found out we were pregnant and at 10 to 11 weeks I had a miscarriage. I remember all those crazy feelings that I had… just feeling really sad.
In May of 2020, we found out we were expecting. I remember how happy I was. I still remember the look of happiness my husband gave me and a warm, breezy hug my wife gave me. We were very happy with this pregnancy but this pregnancy did come with its own complications. We made it to 35 weeks. My labor was very dramatic, I really wanted to have a vaginal birth but that didn’t happen because once they broke my water, my placenta ruptured and I had to get an emergency C-section. Luckily we came out of that one Alive. my baby and I spent a whole week in the hospital she was in the NICU for about a week. She needed some feeding assistance and also oxygen. She also need it to be in the bili light, but she did such an amazing job and she was so ahead of everything – nothing like what the doctors were expecting from her.
Eight months later we found out we were expecting our little Kymani. I remember the day that I found out I was so scared and I just had a crazy feeling. I remember scheduling an appointment with my doctor. I didn’t want to take a home pregnancy test because I didn’t want to believe it. I was so scared because of how traumatic my birth was with my daughter.
When the doctor came in and told me the test was positive, I remember I cried. Not because I was pregnant but because I was very scared. I didn’t want to lose my life or my baby. I remember that day in the office when she told me it was going to be a very hard journey and she would do her best for us, “to make it out of this alive.” She also mentioned that I was still very early on in this pregnancy and there was other options. I remember for me at that time there was no other option and I don’t regret the decision I made to keep my baby. I have never been a believer of abortions. When I came home and told my partners, they weren’t mad at all. If anything they were more worried. We decided to just go with the flow and see how things would go. And that’s exactly the same thing my doctor told me.
Throughout the week things were good. My first trimester was like an irregular first trimester but it wasn’t so bad with the nausea and vomiting. My doctor was keeping a very close eye on me, seeing me once a week, sometimes twice. On my 12 week visit, my blood pressure was high so she decided to start me on Labetalol. About 2 weeks later I ended up in the hospital with very uncontrolled high blood pressure. On that visit they went higher on my blood pressure medicines, adding 2 more. It got to the point that I was on the highest dosage for my meds. I was seeing Maternal-Fetal Medicine, and they were on top of everything and communicating with the high-risk OB team at St. Anthony’s. My last hospitalization at St. Anthony’s they informed me that they were going to transfer my care to the University so Maternal-Fetal Medicine and the other OB specialist will take care of my pregnancy in case my baby was born early. I remember having a lot of mixed emotions about this because I was very happy with the care that I was given by my doctor and her team.
Through my whole pregnancy I was in bed rest, I couldn’t work and I couldn’t do anything. The days that I would try to help out around the house and do laundry and try to stay active so I didn’t get so bored. Towards the end of the morning I would feel so sick and I would have to lay down. My blood pressure would be so out of control and laying down would not help. Sometimes the medication wouldn’t do anything for me. Those were the times that I would end up in a hospital and they will keep me overnight.
On January 20, 2022 I remember feeling very sick. I called my doctor and she told me to go to the University. She had already talked to the providers over there and they were expecting me. When I got to the hospital, they tried everything they could to bring down my blood pressure. They had contacted the doctors at the ICU because they were planning to transfer me there. They gave me an IV drip to help with the blood pressure and after multiple attempts of giving me different combinations of high blood pressure medication through my IV, my blood pressure came down and it was back to normal. The next day I met with so many different doctors. Different high risk OBs, neurologist, neunatologist. They started me on magnesium to prevent seizures and to see if it would help with the headache and my vision getting blurry. They ended up doing an MRI of my head, a CT scan of my head. Just to see and to rule out anything going on with hemorrhoids or anything that might’ve been crossing the headaches.
A couple days later I talked to my doctor because I wasn’t feeling good and my blood pressure was very high. She wanted me to go into the university. I was scared and didn’t want to. I started to get ready and all I could do is cry. My husband came in the room, hugged me and told me do what ever you think is best. I remember he asked me why I didn’t want to go, and I told him, ”I’m scared that they will deliver me and he will die. I don’t want to lose my baby. He is so small.”
When I went to met him, it was like I already knew him, he was so perfect, so beautiful, so sweet and innocent. I was in love with my baby boy. For the first couple of days, he was doing what ever preemie baby would do. But then things got bad. His heart rate was fast and they couldnt figure out why, they decided to go with their gut instinct that he was sick. They started antibiotics and sent his blood out for culture. A couple of hours later it was determined my baby boy had an infection. Methicillin resistance Staphylococcus aureus (MRSA). Kymani was in the oscillator and his settings were high, he was on 3 different antibiotics, blood pressure medication, fentanyl and he was getting a lot of blood transfusions.
Kymani opened his eyes on February 1, 2022. He was so beautiful, he looked so much like his brother Julian, and his dad. I was so thankful to be able to be there for that. The nurses were always so nice and always very informative. The doctors always kept me updated, I love that I was able to be part of his cares. I was pumping every 2 hours and working hard on building my milk so my baby would have the best. I joined a Facebook preemie groups so I could stay educated and get a glance of what our journey might look like. I stayed hopeful and positive.
The next day on our way to the hospital, they called me and told us we needed to get there soon. When we got there, he had another attack. He was getting multiple x-rays, multiple blood classes and multiple ultrasounds almost every. single. day. Until one of the x-rays showed the infection in his lungs and that’s how they figured out why he was struggling so much with breathing. Kymani kept having his ups and downs in the NICU, the down days were the days that they did so much to help him. They ended up putting a chest tube in to release pressure in his chest. But on his Up days, my baby was happy, and he would look at me, he loved when I talked to him and sang to him. We held hands a lot and I would talk to him about our family and how much he is needed and wanted. I always told him how much I love him. Everyday, every minute, every second I would tell him I love him.
On February 9, 2022, that was Matts Birthday. Kymani was doing so good. His vitals were amazing, he was active and happy. The doctor came in surprised they didn’t need to come check on him. I left that day around 5 p.m. and when I was leaving his vitals started to act funny. I went home, called the nurse and she told me he was jumping a little but not to bad. She told me not to worry and if anything they will call me. Then I got a call at 1 a.m. He wasn’t doing well and we needed to go. We rushed to the hospital and when we got there they were able to stabilize him. The doctor explained why they were so scared, thinking it was an issue with the X-ray picture because they took the same picture, same angle a couple of minutes before we got there and it was ok. We stayed for acouple of hours, went home and came back in the morning.
February 10, 2022. A day I will never forget. That day I felt off. I felt like something isn’t right. The same feeling I had when they decided to deliver. I got to the hospital and Kymani was having another attack, his vitals were all over. I had a 9 a.m. appointment at the hospital outpatient clinic, so I went to get that out the way. When I came back, Kymani wasn’t moving much. His eyes were open, but not blinking. I remember touching him and talking to him and he didn’t respond to me like he used to. I went to the nurse and told her, “something isn’t right.” She came in and she noticed the same thing. The doctors came in and tried to do another chest tube but they didn’t get air, so they order an ultrasound of his head. I remember seeing the look in the doctors eyes, and they walked away. I went by my baby and just touched him and changed his diaper, touched his forehead and I got a small blink, and he went to sleep.
I saw the doctors come back and one of them came up to me and told me, “we will come talk to you soon, he is suffering.” I remember when she told me that, my heart broke. It’s like I knew what was happening but in denial. I was texting with my partners all day. Then it was me and matt. The doctors came up to me and asked to talk in private. They told me that there wasn’t much they could do for him, his blood was getting acidic and he was developing early signs of PVL. I couldn’t believe what I was being told. I didn’t want to believe it. Then he says, “some moms just hold their little once until they pass.” I looked at him and told him, “I don’t want to lose my baby, please save my son. I want to go with my baby.”
My baby passed away on February 10, 2022 at 4:34 p.m. He fought for 18 days in the NICU. I never thought I was going to lose my baby. Never thought I would have to arrange funeral service for my own child. You see and hear things like this happen, and you try to avoid the thought of it happening to your own, because with just the thought, your heart aches. That day, those words, destroyed my world. Loosing a child is heavy lifting. They say as time goes on we figure out a way to get through the days. But there is no denying it, it is so painful. Every single morning when I wake and look in the mirror, I see my broken heart.