Nolan and Ellis - Sons of Thunder - 26 weeks, 6 days
Well, this post has been a long time coming. I think I’ve been avoiding it because it is so hard to relive the scariest moments of my life. But I will start from the beginning.
I remember it was a Sunday, April 30th and I was in town (WV) visiting with my dad. It was a normal weekend except I was experiencing some back pain. It seemed reasonable enough though because my belly was growing and I thought it was just the added weight that came with multiples! We went to church and had a great day. A very normal day. At this time, I was only 26 weeks pregnant. Little did I know. I would give birth to my boys the very next day.
My husband and I drove back to our home in Pennsylvania and we went to bed. The next morning, (May 1st, 2017) my husband was getting ready for work and I woke up with him. I couldn’t get comfortable at all no matter what I did. There was just so much pain in my lower back. However, I still thought it was all very normal. Then 10 am rolled around. I noticed the intensity of the pain increasing, so I decided to time it, and sure enough it was every 5 minutes. I started to panic. I called my husband and told him when the pain came I felt like I couldn’t breathe.
He immediately came home and I called my dr insisting that I come in right then. We got to the hospital at 11:00am and sure enough my beautiful 2.4lb baby boys were born around 11:30am only two minutes apart. Because it happened so quickly, I didn’t have time for any pain meds, and I still had my clothes on when I was pushing. Initially both boys were facing head down, but when my water broke, they both went breech.
They were still attempting to put IVs in right before Ellis came out. When Ellis did come out they told me that they wanted to do a C-section to get Nolan and so they began to put the mask over my face. However, I felt a contraction and slapped the mask away and sure enough, not even a minute later Nolan made his appearance!
The team at Forbes Hospital did such an amazing job caring for the boys and making it appear as if everything was fine. I heard both of my babies cry, so I wasn’t worried. As scary as 26 week preemies sounded, there was not one time that I didn’t think they would be okay. I just believed they were going to be great. I would come to find a week later that they both had to be resuscitated.
That same day there was a tornado warning and because of not being able to fly, it took West Penns transport team about an hour to arrive. This was very scary because Forbes didn’t have the proper equipment for babies so premature, yet they did an amazing job. West Penn was where I was supposed to deliver but we would have never made it there in time.
West Penn finally made it and they packed the boys up with the transport equipment, this was the very first time I ever got to see them. They had been born for over an hour and I had not even seen them. So this moment was the most overwhelming experience of my life. I burst into tears because I couldn’t believe how in that moment my life had changed forever. These boys meant so much to me.
Of course, I began loving them when they were in my belly, but there’s something about actually seeing your child for the first time. There’s nothing like it. Caleb and I each only had a few moments with them before they had to leave. That night I had to stay the night at Forbes but Caleb sent me pictures of the boys. I thought they looked incredible considering the circumstances. I had such a peace in my heart. God was really preparing me for the roller coaster ride that I was about to experience.
The next day I hopped out of bed and was trying to get out of the hospital as soon as I could. It was early afternoon and my family and I made our way to the nicu to really get to “formally” meet the boys for the first time. The boys were in separate pods (rooms) so I came to Ellis’s room first. When I lifted up the blanket laying over his incubator, my knees became weak and I cried harder than I think I ever have. I had just saw a picture of them the night before but no picture could EVER do justice to how small they really were.
I felt helpless in that moment. Wanting to hold him, kiss him and help him, but I knew I couldn’t. They told us the first 24 hours was the most critical… and then the next step would be the first week. Holding them would have been too much stimulation for them, and they were so fragile, we couldn’t even touch them. It was too dangerous. They were so susceptible to any infection. I finally made my way to Nolan, crying all over again as if it were the first time.
However, everything seemed to be going in the right direction. A couple of days later, I woke up and was pumping, I planned on calling for an update right after but their number popped up first. My heart sank. They only called for updates that weren’t so good. They called to tell me Nolan had an episode. He had a pulmonary hemorrhage and they thought he had some strange activity with his hands and later classified it as a seizure.
Trying to hold it together, I ran into the bedroom to wake my husband and we rushed to the hospital. That’s when we saw an oscillator for the first time... one of the scariest machines at that time to see. My little 2 lb baby was hooked up to this breathing machine where it kept his lungs expanded so that he didn’t have to do any work. Which could have potentially caused more damage and bleeding had he stayed intubated. As if this weren’t scary enough we were told that the bleed could have also went to his brain but we wouldn’t find out for another few days.
I will tell you, that I have never relied on the Lord so much. I was actually ashamed that it took something like this for me to have the relationship with Him that I surely developed. My husband and I prayed fervently, several times a day. Not only did we pray. We prayed with such a confident faith. We trusted and believed as if the prayer had already been answered, and you know what? It ALWAYS was.
Monday came around and we came in for the results. NO brain bleed! Which they had told us a few days earlier was very common and they wouldn’t be surprised if he had the bleed but NOPE. We knew our God had big plans for these boys. We knew He wanted good for our family and we refused to believe otherwise. Nolan slowly recovered from this as Ellis was thriving. It wasn’t even a month and Ellis was on CPAP almost breathing on his own. He was also up to his full feeds, and always smiling. People were blown away by how he was excelling but of course with having twins, I couldn’t get past the guilt and desire for Nolan to be where he was.
One day, we went to visit and had a great day with both of the boys. This was now toward the end of May and we were just beginning to hold them for the first time. Nolan was improving, and Ellis was still thriving. So we left for the day, only to get the most terrifying phone call of our lives the next morning “Erika, Ellis is very sick, we think it is NEC.” For those of you who are not familiar with this, it stands for-Necrotizing enterocolitis and it is a serious disease that occurs when the intestinal tissue become damaged and begins to die.
I replied -“no no NO!!!” I knew in my mind how serious this was. From the moment they were born they would talk about in rounds how this is something you DON’T want to happen to your child and the severity of it. How could this have happened? It was SO fast! I was JUST there and he was thriving!! NEC is the leading cause of death in premature infants. Knowing this, my faith was shaken. I needed someone to share their faith with me.
I called my husband and had him meet me at the hospital. When we arrived, now Ellis was on an oscillator. His heart rate over 200 and the machine was doing ALL of the work. I finally mustered up the courage to walk near him and my husband had to hold me up. He was a completely different color. He was gray. Our nurse who we called “Aunt Carmen “at the time was caring for him and with tears in her eyes told us that she was very worried.
My husband instantly grabbed me and said “listen. He is going to be okay.” I replied - “Caleb, do you see our son? Do you know how serious this is?” And he said- “yes, but I know our God and He told me, Ellis is going to be fine. “We took a moment and prayed over him. I think we prayed more in that day than I ever thought was possible. We reached out to every single person we knew to pray but not just to pray, pray BELIEVING it had been done and that he would be healed.
The doctors eventually got to a point where they just felt more comfortable sending him to Children’s hospital. Because the hospital that he was currently at didn’t perform any surgery, we thought it would be best as well. However, I was feeling incredibly torn knowing that at that point our boys would be in totally separate hospitals.
We drove to Children’s and it was so different. I had gotten so used to West Penn. I had developed a family and now I was starting over. I was very intimidated by this hospital because I knew if any child was there it was because they were very sick. Especially in the nicu. When we got there we found out that he did have a perforation in his bowel (obstruction of the bowel) and they took him into surgery almost immediately. Waiting for that surgery was the hardest time of my life. We were trusting in The Lord, but I kept crying with sadness, feeling heartbroken that any mother had to feel this kind of pain.
Finally, the doctor walked in and said they got the infection out, as much as they knew! When he came back he only had 69cm of bowel left and had to have a silo bag for weeks (so they could observe his intestines without surgery, that was awful.) Also, the normal amount of intestine is almost double that. He was now considered a short gut baby but he was in the very early stages of recovery! Praise God.
Between pumping and delivering breast milk to Nolan and driving between hospitals. I was feeling guilt by not being able to be with both of them at the same time. It really had me down. So much that it was very much affecting my milk supply. I got to the point where I had to pump every 2 hours to try to get the supply back up. Unfortunately, it wasn’t effective for me. Every moment I tried to pump there was another alarm going off that Ellis’s heart rate had dropped or that he was desalting. I felt like giving up but I knew how important it was for these boys to have this “liquid gold” as the NICU called it.
There were so many bumps and setbacks and so many talks about what Ellis’s quality of life would look like with potentially having a colostomy bag and what else may occur. My husband would always cut them off and remind them of who was in charge. He would always pray for the team before they took Ellis into his surgeries. He would remind them that their hands were blessed.
Thankful to God for sending my husband to me because the Lord surely worked through him to bring me peace throughout all of this. My husband’s outlook and faith kept me so strong.
Eventually we were able to get Nolan transferred to Children’s and we moved to a twin room where they were FINALLY together for the FIRST TIME!!
There was only one more occurrence that threw me almost over the edge. One day, I was pumping, and I noticed Ellis starting to desat. Before I knew it his saturation number was 17. (Normal 90-100) then, his heart rate started to drop and right then another fear of mine became reality. My nurse hit the code button and before I knew it, there were 20 nurses in our room. I ran out and panicked, dropped to my knees and prayed. He was resuscitated once again.
The crazy part about this experience is that we never had an explanation for it. They ran several tests worried about an infection and everything came back great. They blamed it on pre-maturity, but that was enough to make me not leave the room for a good 2 weeks. From the time we left West Penn, my husband and I had fully moved into Children’s. He got ready and went to work from there. We were finally all together. We had no reason to go home.
One of the only times we were home was when we had to move out of our apartment and into our first home with the help of family and friends from the NICU who soon enough became family.
From here , things did start to look up.
We brought Nolan home August 4th after 96 days in the NICU. I stayed with him at home to try and get him acclimated to new surroundings and to get a schedule down before Ellis came home. Little did we know he would still be there for close to 3 more months.
But finally, after 6 surgeries, multiple blood transfusions, being resuscitated, having his gallbladder removed and having a central line and gtube placed, he came off of oxygen support and was transported to the gi unit floor where he is estimated to come home within the next WEEK! My oh my what a journey this has been. Never did I EVER imagine that I would go through this. Other than the pain the boys endured, I wouldn’t change this experience. My faith grew so much. God showed me His faithfulness every single day. I am so thankful for the relationships I built and the nurses that became family.
I give all the glory to God and thank every single person who prayed for our family. Every message and card was read and every gift was received with gratitude. This experience showed me the good that’s still in the world. That there still are incredibly selfless people. I am happy to see things in a different light and I hope one day to give back the way others have blessed us.
I never want to let a moment go by where I pass someone hurting, because I know what it feels like. I wish so deeply I had someone with some insight on their similar experience for me that first week. It also taught me patience, which the good Lord knows I never had. However, with all of that being said, I am blessed and I am THANKFUL.
These boys are surely proof of what prayers do!