I woke up, threw my hair in a bun, and some random clothes. I had every intention of going to my specialist appointment and coming home to snuggle back up with my husband as my nights were getting more and more sleepless.
I don’t want you to think that I took these specialist appointments lightly though they would bring so much fear and anxiety to me. My entire pregnancy I was faced with disappointing reports and news. I didn’t want to hear it anymore, after experiencing a miscarriage months prior I was already fighting off fear. At 12 weeks we were told that the tissue on our babies neck was “thick” and that further testing was needed. At 14 weeks we got the devastating news that our baby BOY had a 10% chance to have trisomy 13. We had the option to confirm these results with an amniocentesis but knowing that it wouldn’t change the outcome of carrying our little boy and the risk involved we chose not to. We chose to remain positive and trust that God was going to give us a healthy baby boy.
I won’t lie to you and tell you that this was as easy as that. It was FAR from it. I struggled every single day to keep this positivity and to fight through the fear and doubt. When my appointments would come and we would continue getting told that our baby has another “sign” that could mean the diagnosis was accurate it would feel like all my progress of overcoming the fear would creep back in and hit me like a ton of bricks. I fought. I fought so hard to overcome it after every appointment.
Being that this possible diagnosis made our pregnancy high-risk I was at the OB or specialist every two weeks. Although, this doesn’t mean a sono at every appointment. A lot of my OB appointments were just check ups on heart rate, urine sample, weight, and blood pressure. On May 6th I went in for a typical OB appointment at 27 weeks. I wasn’t expecting to see my sweet boy but hearing his heart rate always calmed me and gave me less anxiety. His heart rate was 151 but this time the doctors words stuck with me at that appointment when she said “he must be sleeping”. It stuck with me for some reason but I took it as he wasn’t moving around a lot at the moment, which can be totally normal at times. This was Thursday. I went home that night and I still hadn’t felt his kicks and that’s when I started to worry. I just kept thinking that once I laid down for bed he would be his active little self.
I laid down that night and nothing. I was trying to press on my belly to get him to move around, shine my flash light on my belly and nothing. I prayed and decided I was probably overreacting as I have my entire pregnancy and that he was fine, I had just heard his heart beat that morning. Fast forward to Sunday I felt a few kicks in between there but nothing like i was use to. It being the weekend I felt like I had no one to call even if I was concerned about his movement since the doctor wasn’t open. This left me feeling so anxious for our appointment on Monday morning but I was so ready to see my boy and know that he was okay.
This appointment was no different all the anxiety and fears were trying to overcome me. I immediately asked the nurse if he was moving as soon as she had the sonogram up on the screen. She said “yes” and did her typical measurements. After seeing the numbers on the screen that she was getting my heart was racing and I knew something wasn’t right. I kept seeing 25 w 2d and I was 27 w 4d. She left the room to show the dr as usual. Just like every other appointment I immediately pulled up my bible app and just started reading my devotional and praying.
The specialist walked in the room and said “you need to go to the hospital” my heart was instantly beating out of my chest. I asked him if he was seriously because I couldn’t handle any jokes at this time. He said “no I’m serious, you need to go straight to the hospital because your baby does not have blood flow through his umbilical cord and you have no fluid. Your chances to have a still born birth are EXTREMELY high. You’ll need to have a c-section today.” I won’t lie to you. This specialist wasn’t my favorite and often times he left me feeling nervous and uneasy about my pregnancy, as he REALLY pushed me to do the amniocentesis and since I didn’t he would always make remarks about it. The way he said these things to me had me in a total frantic. It wasn’t comforting in anyway and I felt like if I moved in anyway my baby was going to die and I would never meet him.
I didn’t waste a single second before I called my husband and told him that we were having our baby boy today and I need him to come to the hospital. Terrified. Alone. Shaking. I was feeling all the emotions as I took myself to the hospital. I called my mom in Oklahoma and told her I needed her to leave and come as soon as she could because I was going to have our baby today, knowing that she wouldn’t be able to be with us at the hospital but I needed her. I needed her to be there for whatever was about to come.
As I admitted myself into the hospital around 10am all the emotions were going through my head. I’m 27 weeks, is he going to survive? Is he going to make it until they can get him out? Are these nurses going to hurry up? A c-section? I’ve never had surgery on anything and they are about to cut me open. Will my baby boy have trisomy 13? What will he look like? Will I get to hold him? Will they do another sonogram before they cut me open?
Here’s what I didn’t care about…COVID, having my hospital bag packed, having anything ready at home for our baby boy. None of that mattered to me. The only thing I wanted was for our baby to be healthy and that I would make it through this surgery.
Getting checked into my room there was absolutely no urgency from the nurses as they hooked Luka and I up to all the monitors, asked me questions and got me situated into my bed. Which confused me because the specialist had me thinking I needed to be cut open immediately and get him out or he was going to be stillborn. The nurses just didn’t seem to know exactly what was going on as they waited for the Dr’s orders. As this was all happening my husband arrived and started asking all the questions, which is when we were told that the hospital was my new home until Luka made his arrival and that the hope would be for him to stay inside until I was 28 weeks and then 30, and then 32 if at all possible. This meant I could be living in the hospital for the next month and with COVID regulations, Orlando would only be able to leave very minimal or choose only to stay with me on the weekends. It also gave me relief that we had time to help him grow and would be very closely monitored.
Luka was being stubborn in my belly and the only way for the nurses to get the monitor to pick up his heart rate was to have a million bands holding it the most difficult way which resulted in little to no moving in bed for me. It was uncomfortable and I was really wondering how I was supposed to do this for the next week let alone month. We’re talking I had to use a bed pan to pee. (Eeekkk)
After a few hours the nurses had the opportunity to speak with the doctor and let me know that with there being no fluid around Luka he has no room which means that his umbilical cord wasn’t getting blood flow resulting in him having decreases in his heart rate. If those declines persisted and dropped below 60 and didn’t come back up they would need to deliver him emergency c-section as he was breech.
It was now 10 or 11pm and although these circumstances weren’t ideal I was calm with hearing his heart beat 24/7 on the monitor. Several nurses came in and said they were going to move me to the 2nd floor which was labor and delivery. They said that it wasn’t time but that they wanted to monitor him more closely and be prepared if they needed to take me into surgery quickly.
After getting down to labor and delivery they had to basically re-admit me onto their floor which meant more blood work, monitors, all of it and also put me on a strict no food order. It wasn’t until about 1-2 am that the nurses were finally done with all of this and it was time to rest. The only issue was that Orlando was STRUGGLING to sleep as he wasn’t prepared at all to stay the night and his allergies were going crazy. The nurses told us that his heart rate hadn’t made any declines since we had been on the floor and they didn’t think I would be having a c-section anytime in the near future so Orlando decided to go home and get some rest and come back (we live 20 min from hospital). This terrified me. I was so scared that I was going to go into surgery and he wouldn’t have time to get back to be with me, but I also knew he needed to get some rest because this was scary not only for me but for him. Luckily I fell asleep while he was gone and he came back around 7:30am when they came in to draw more blood and also told us that he still didn’t have very many declines in his heart rate. I remember telling Orlando that I wanted Luka to continue to grow and stay in my belly as long as possible but I also was so anxious to get through this c-section if it was going to happen.
9:00 am rolls around and an entire team of nurses, doctors, and anesthesiologists come into our room and I knew that this was it. They told me they were going to prep me for a c-section and that we would be moving to the OR in about 15-30 minutes. I was T E R R I F I E D. I’ve never had stitches. Ive never be admitted into a hospital and here I was about to have an emergency c-section to our baby boy at 27 weeks.
I wasn’t sure if I should put my c-section experience in here or not but I decided that we can save that for another blog post.
After Luka was born I didn’t get to see him. The only reason I knew he made his arrival was hearing “Happy Birthday” from the nurses. Orlando saw him as they began preparing him for the NICU and as they were leaving to take him up there.
I remember laying there hoping that the numbness would wear off quickly so I could go see my baby boy. Little did I know they would make me wait a whole 12 hours before I would be able to get up and see my baby boy. After they got him settled in the NICU Orlando was able to go visit him and we had all the hope in the world that he would be able to overcome any issues that he was facing in his little body. Orlando took pictures of course and I held on to those as I waited to see him myself. I was worried every time I seen a dr walk into our room though. I didn’t want to hear anymore bad news and I was soooo scared that something would happen to him before I was able to see him.
Our one true hope was that he wouldn’t have trisomy 13 and if you don’t know anything about trisomy 13 typically they are born with physical defects. My baby boy looked absolutely perfect to me and it gave me so much relief but I knew that wasn’t the only obstacle we were facing and that didn’t mean he was in the clear for chromosomal abnormalities. The doctors had submitted the blood work to test for this and also were taking scans of his heart, lungs, and kidneys. After getting the results back for these scans it showed that Luka’s heart didn’t develop as it should have and the cardiologist came to our room and let us know that he would need to be transferred to Medical City Children’s Hospital in Dallas (we were in Arlington, Tx) to have more advanced care for his heart and enlarged kidneys. Due to the underdeveloped heart his lungs were also behind on where they should be developmentally and since I had to have an emergency c-section I was only able to have one shot of steroids to give them a boost before he arrived.
There’s a lot of discussions and things that were happening during these short few days that I am leaving out just because it’s sooo much. Honestly some things I can’t even remember or how they fit into the timeline.
The transfer to Dallas happened pretty quickly as they seemed to want him over there sooner rather than later. Orlando and I got to go down the NICU together (this isn’t allowed due to COVID but due to the circumstances we were facing they allowed it) as the LifeFlight nurses transferred him from the NICU bed to their mobile incubator. It was scary and surreal what these nurses are able to do. It was all hands on deck, machines, wires, so many things that they were working with to keep our boy alive. The flight was 15 minutes and they called us after they got him settled in the Dallas NICU.
The Dallas doctor called me and had told me that he didn’t really see any physical signs of trisomy 13 but that the results could take up to 5 days. It sounded so good but I still knew it was a possibility. Due to Luka being in Dallas and me being in Arlington they wanted to get me released as quickly as possible but also didn’t want to let me go until they were for sure I was healthy enough. I stayed one night in the hospital while he was in Dallas. THANKFULLY the Dallas NICU gave us LIVE access 24/7 to view our baby boy while he was there. That was so special to us.
There hadn’t been much change or updates when I was released by the hospital the following day. They released me around 12:00pm and we went straight to Dallas. A 40 minute drive after a c-section wasn’t ideal but I honestly didn’t care, I wanted to see Luka. After arriving we both felt like the nurse didn’t have great news for us and he got the doctor fairly quickly to talk to us (again, we are not allowed in the hospital together-only one at a time but they made an exception especially since I was in a wheelchair). The doctor was INCREDIBLE, he didn’t have great news but knowing that he genuinely cared about us and what we were facing was something that I think has made the healing process so much easier.
He basically told us that Luka was not healthy, he was really fighting for his life in his little incubator and that due to the complexity of his heart issues and how early he came that it was impossible to do a surgery at this time and his chances of survival were very slim. Blood was going in but it had no way to come out. So blood was not being circulated properly in his body meaning that his other organs weren’t functioning as they should. He needed to grow A LOT and with his heart not getting blood out that was almost impossible. He also said that IF he did in fact have trisomy 13 and the complexity of his heart that no surgeon would be willing to even attempt it. Our options weren’t ones we wanted to hear. We had to go home and face the reality that was in front of us.
The next day as we were getting ready to head to the hospital the doctor called to let us know the results from the chromosome testing which did in fact come back positive for trisomy 13. It felt like bricks were sitting on my chest. I couldn’t fathom saying goodbye to our little boy. My heart literally HURT. And yes, for those of you wondering trisomy 13 doesn’t mean that your child can’t live…the odds aren’t great though and our baby wasn’t just facing this diagnosis he was VERY premature, had extreme heart, lung, and kidney issues which made the diagnosis even more complex. Had this been a little hole in his heart or something less extreme things may have been different.
Orlando called his dad to take my mom, orlando, and I to the hospital. We are so beyond thankful for their support and just being there for us.
Orlando and I just stood over our little boy all day telling him all the things as we held his little hand. We spent time with him and finally got to hold him for the first time as we said our goodbyes. 💙 it was by far the hardest thing I’ve ever experienced in my entire life. I didn’t want to let go of my perfect baby boy. I didn’t want him to leave my arms. I wanted him to experience this earthly life with us as his mommy & daddy for a long time but we also couldn’t bare the thought of him suffering or not having quality of life.
It seems unfair and it feels horrible, but I do believe that God has something really great in store for our little family and that we will also get to experience having healthy children here on this earth with us. In fact I KNOW this because my husband was hands down meant to be a daddy. His love for Luka shined so bright and brought me so much joy just watching him with our baby boy during such a dark time. He hasn’t stopped being everything I needed during this recovery and time of grief. I couldn’t imagine doing this life without him.
We also would like to say THANK YOU to all of our friends and family, including those that we know only through social media. We have been blessed with such an incredible support system. The calls, the messages, the comments, all of it has meant so much to us. Even if we didn’t respond to your messages we read them and appreciated it more than you know. So many of you have told me how strong I am and the truth is, I’m not strong. Not on my own at least. I serve a BIG God that is giving me all the strength right now.
We will get through this. ❤️