Nothing too much bothered me after I got adjusted to my routine with NICU. My schedule of afternoon feedings, bonding and dropping off milk and my pop ups at night to bathe her feed her and talk to her had become my norm.
In my family we have the baby shower after the baby is born as a precaution to make sure the baby arrives and you are not stuck with presents and reminders of what you may have lost. Knowing Skylar would not being in attendance for the shower pictures were taken so she could be there in spirit and people could “see” her.
On the day of the shower I had a lot of running around to do to get prepared for the shower. I had to get my hair done, get my shoes and get my afternoon visit in. I had stopped by in the morning to visit and told the nurses I was having my shower today and I would miss a few feedings. They said “don’t worry about it mommy, she’s good, go enjoy your shower and take a break”. I said ok but had a feeling something would go wrong if they knew I wouldn’t be visiting the rest of the day. So I ran my errands and packed my outfit for the shower and decided to not go straight to the shower and to stop by the NICU. Good thing I went with my gut. I went to Skylar’s bed and saw Similac bottles in her station and one was missing from the pack. I immediately began to get angry and asked which nurse was responsible for Skylar today? She came over and I asked if she gave her Similac? She said yes. I asked why when I bring her milk every day. There should be a stash of milk in the refrigerator and the freezer. She said you ran out. That was a bold face lie! Now let’s say her lie was true, I’m there everyday several times a day. Why wouldn’t someone say “mommy you’re running low on milk”? Because it wasn’t true! The heffa didn’t want to defrost any of the milk. I called her out and asked to speak to a supervisor. I expressed my frustration and asked that the freezer be checked for her milk. Just as I knew, there was milk in the freezer. Now had I not visited the NICU before going to my shower Skylar would have been given an eight-pack of Similac against my consent. This episode changed my mood for the day and I had to be around friends and family for my shower. I tried to enjoy the shower but in the back of my mind I kept thinking about the betrayal at the hospital and after shower was over I helped clean and headed home so I could make my night visit to NICU. I made sure to do late night visits to see if the same was being done over night.
So now that I’ve made myself at home at the NICU and made a routine of visiting many times a day, it became time to bond with my baby. On my visits to bring breast milk and feed her I would also hold, cradle, read to, wash and dress her. I learned how to monitor screens. I would notice when her O2 stats would drop, when her heart rate decreased, how to connect the leads after taking them off to feed her and when to call for the nurses for help.
One night I was there and while Skylar was sleeping I went to the designated area to pump out some milk. While there, I overheard a conversation with the head of NICU. She was informing parents that their child passed away. My heart stopped. I was just getting used to my daughter being there and a baby died in the same NICU. I wanted to pull my daughter out and place her somewhere else. I called my mom and she told me to calm down, “babies die in NICU. Not all babies make”. The information didn’t calm my nerves but I guess it was true and my mom would know because she’s a nurse and started out in NICU. (Now she’s on the opposite of the spectrum and working in geriatric because of the heartbreak with babies). After our phone call ended I prayed and went to where Skylar was stationed and stared at her sleeping. Jesus take the wheel!
I left off my last post with realizing my daughter would not be coming home any time soon. She would not be on her way home until she was able to breathe on her own and remain at 85% or higher consistently.
My daughter Skylar was the biggest child in the NICU. She was 20 inches long and weighed 8 pounds 5 oz at birth and was sharing a NICU with premature babies. I would visit daily to drop off breast milk for her consumption and to build up her immune system. On my visits I would notice the nurses removed the preemie babies from the incubators to feed them and they would put their arms through the incubator holes and feed my baby by sitting her up supporting her with their forearm and her head cradled in their hand while spurring her jaw to give her the bottle. This frustrated the crap out of me because she was not receiving the same nurturing care the preemie babies were getting. Where was the intimate touching? Where was the skin contact? Her listening to a heartbeat? Her being cradled and touched on so she knew she was not alone and cared for. Granted, she was hooked up to different wiring for breathing support, but still, that’s my baby and I needed her to know she was no different from the other babies. From that sight on, I asked the feeding schedule. I made sure I was there everyday to feed her so she could feel my presence, be loved on and to hear my voice. I asked the nurses for the head of the department and addressed my concern with her not being picked up and fed like the other babies. He said the nurses don’t mean any harm, they are probably concerned with the wiring to remove her. I explained she needed to be held and acknowledged and if it was possible for her wiring to be temporarily removed so I could hold her during feeding. He said absolutely. I watched as they “unhooked” her so she could be taken out of the incubator so I could hold and feed my child. As I watched her nuzzle up to me and hold my finger my eyes began to water. She was missing this. She needed this. I needed this. It was only about 20 minutes because the machines started beeping and she had to go back in and be connected again, but it made a big difference. From that moment on I made sure I was there for feedings, bathings, and bonding time with my daughter. I completely forgot about her having down syndrome. In my mind she was just like any other baby that needed some loving and attention. I would bring her outfits, breast milk, bathing towels and rags and even brought a sound machine to play music or white noise for her. The nurses would play it for her and her neighbor Mr. Green (a drug baby that was left in the hospital after the mom had delivered). NICU became my second home. I spent at least 8 hours there a day. I would start my day around noon for my first feeding. I would return in the evening and pop up in the middle of the night. Everybody knew me. Everyone would grow to know and love Skylar before she left NICU for good. I would make sure of it.
I was 33 years old when I became pregnant. It was a shock to find out because I hadn’t missed a period. I went to the doctor and routine triage called for a pregnancy test and asked if I wanted to take an HIV test. I agreed. This was on a Monday. As I was called to get the HIV result I was informed I was pregnant. Who me? Huh? My period isn’t due until Friday I said out loud.
That began my pregnancy journey. I informed my sister’s and cousins and sat down at a restaurant and told my mom. I went to all doctor appointments and took all test. When I made it to my third trimester I gave my child a name. Skylar. I looked up the meaning of the name and each has an impactful meaning although the American meaning is my favorite. (“The different meanings of the name Skylar are: English meaning: Eternal life and strength. Dutch meaning: A shelter. American meaning: The Sky; Guarded; scholar, learned one.”)
I had grown comfortable with my pregnancy and named my child and began thinking about my parenting style and envisioned everything we would do and how I would be her best friend. I posted a pregnant belly pic at 4 months. My introduction to the world of friends and family I didn’t tell beforehand.
Then one day at a post 4 month check-up, I found out my blood work came back abnormal. I did more testing and awaited the results. I had just shared I was pregnant. What could be wrong with my blood test? At my next appointment I found out I had a one in ten chance my child would have down syndrome. I had the option to wait until birth to find out if I chose to continue with the pregnancy or I could have a needle through my belly for testing. I chose the latter as I was chosing to keep my baby. I was not too concerned she would have down syndrome because this was gonna be my first child. I was still young. Under 35 and there should be no chromosomal abnormalities. I did the test and received a call that my child would have down syndrome. The news was hard to take in. I cried and was quiet for a while. I decided to chuck it up and tell my family over dinner. They just as shocked but very supportive. I never imagined not having a healthy child and my first child (and a single parent) having any issues. During my days at home I researched down syndrome. I learned all about the different types. I accepted my fate and prayed my entire pregnancy. God doesn’t give you more than you can handle and there are no mistakes in his design for you life.
The only part about my pregnancy that bothered me, was the doctor’s trying to talk me out of keeping my baby. They would tell me it’s going to be hard, you don’t know what you are getting yourself into, its not too late to have an abortion etc. I found this to be really insensitive knowing I chose to keep my baby and to continually hear this up beyond 6 months was truly annoying. That and being reminded I was carrying a child with down syndrome as if I didn’t know.
Once Skylar was here she was sent to NICU because of low oxygen and something called pulmonary hypertension, what my mom called high blood pressure in the lungs so I could understand what it was. Being a first time mom I was naive to how long my daughter would be in NICU. After being discharged from the hospital I wore my 24 hour access bracelet and would visit daily being that I lived walking distance from hospital. I would ask everyday is she almost ready to come home? No would always be the answer. Until a doctor explained that she would be there until she was able to breathe consistently above 85%. Boy was she gonna be there for a while. As soon as the oxygen was stopped she would start to drop. Ok, no problem. Let me make myself comfortable at the hospital and thank goodness my boss let me have 4 months paid maternity leave.