August 2nd 2019 changed our lives forever. It was early morning when I woke up not feeling well, I was "cramping" pretty bad enough to wake Levi up. Levi quickly called the doctor on call and we were informed that since there was no bleeding it was just braxton hicks which is completely normal. They told Levi to make me drink 3 glasses of water and get into the bath tub to help some of the pain. Hours later we finally were able to get a little bit of sleep. I woke up around 7:45am and made my social media post for Levi's birthday, got up and went to the bathroom and quickly panic set in. This time there was blood. As I started to panic Levi quickly got dressed and off we went.
When we got to Harris hospital in Sylva, they put me on an NST machine which measures the babies heartbeats and contractions. Both babies hearts looked great, which was a huge relief. They kept me on the machine for a little while and both babies heartbeats looked great, so they were fixing to send me home. The midwife who had been monitoring me asked if she could do a pap smear since I hadn't had one during my pregnancy yet. I agreed, she asked me to go to the bathroom and this time I could feel something and a lot of pressure. I came out and I told the student who was working with the midwife and she got me back in bed. Levi was standing next to me watching as a nurse, student, and midwife was checking everything out down there, and we knew something was wrong by the look on their faces. The midwife said "SH** get the doctor STAT, Levi and Taylor we're having babies today." The only thing I kept say was it's to early they are only only 23 weeks. Panic, fear, and shock took over. As the midwife stepped out the student came over to us and asked if we were religious, we answered yes and she asked if she could pray over us. The midwife came back into the room and said they were sending me to Mission. Levi left with my mom to be there when I got there, my sister stayed behind with me. They were sticking me with needles, IVs, checking my BP etc. while they had me laid back with my feet in the air. I was 10 cm dilated and the sack was right there. Soon the paramedics came in and had me loaded up within minutes, the male paramedic told me that it was going to be a bumpy ride but he was going to get me there. We were not having these babies in here. We hit the road. The midwife rode with me along with the female paramedic, they were both trying their best to calm me and keep my mind off what was actually happening.
We made it to Mission in 33 minutes. When the doors opened there stood Levi, thank goodness. We went through the double doors up to a room where it was full of doctors, nurses, respiratory therapist, ultrasound techs and many more. As soon as I came through the door they were changing out my IVs, giving me more shots, trying to get an ultrasound and who knows what else. The doctor who was assigned my case sat down on my bed with tears in her eyes. She told us they couldn't find the heartbeat of baby A, Hadlee. She said I'm so sorry but she's gone, and we need to move fast. You have 3 options. 1. let nature take its course (they were hoping to deliver Hadlee vaginally, and hopefully keep Brodee in longer) 2. have a normal c-section (this would get Hadlee out but would most likely kill Brodee) 3. have a classical c-section (this would hopefully get both babies out) and then she said you have 5 minutes. The room was silent, I swear you could hear every ones hearts beating, Levi looked at her and told her "you do whatever you have to do to save my wife and two children." When those words left his mouth, we were gone. I was hysterical at this point, scared and in complete shock. When we got to the double doors a man stopped Levi, all I could hear was Levi saying " I love you Taylor. I love you."
I got into the OR where there was even more people including two NICU teams. They were hooking me up to everything while going over my case. All I could do was lay there, I couldn't speak and I wish I could say I was praying but I was in complete shock at what was happening, I was just told my daughter was already gone to heaven and that my son had a slim chance of making it as well. The anesthesiologist kept me calm though, he was so kind. I was laying on the table and he just kept saying "Taylor it's just you and me, don't worry about what's going on around you. Just keep your eyes on me. I'm going to take care of you." I heard the doctor say "I'm ready to cut" and then the anesthesiologist looked me in the eyes and said "you're going to go to sleep now but I'll be here the whole time."
I was taken back into surgery around 11:40 am both babies were born at 11:49 am. Levi, my mom and sister were out in the waiting room. My mom said that Levi was doing his best to hold it together, they were all praying and crying. Mom said that Levi was on the phone with his sister and that they both were praying when the first NICU doctor came out. Doctor B asked where dad was, Levi hung up and said I'm dad and doctor B said "would you like to meet your baby girl?" Levi asked if she was alive, and she said "yes, she's alive" my mom said Levi just hit the floor. Levi said shortly after here came little Hadlee bug, he said she was so small but so beautiful. Right behind Hadlee came doctor H and Brodee bug. Doctor H took Levi up with him to the NICU. Levi said he just stood there watching 8 nurses, 4 RTS, NPs and 2 doctors go to work. They were hooking both babies up to so many machines, ordering X-rays, blood work etc. Doctor H & B pulled Levi aside and told him they were amazed by how well our babies did. They told Levi that they both breathed on their own, did not require CPR and maintained their body temperatures for 10 minutes- they said that is unheard of, especially not having to be resuscitated. They were amazed that they both were alive. God was there the whole time, He was in that operating room, He took care of our little miracles.
I came out of surgery around 1:00 pm, they had to do a classical c-section but because Hadlee was so low and Brodee was up high they had to cut me more than expected. I was in recovery and I had finally woken up a little, Levi was sitting next to me. I could tell he had been crying so I asked what happened? He said "you did it baby, both of our babies are alive and doing well." I cannot even explain the amount of relief and thankfulness I felt, Levi and I just cried and thanked God.
My nurses took me up to meet my babies for the first time, I was still pretty loopy but I will never forget how tiny yet how so beautiful they were. Even at 23 weeks, they had everything. All of their organs, 10 fingers, and 10 toes. They were so perfect. God's most beautiful creation and they were mine.
The next few days were hard. Trying to adjust to not being pregnant anymore and trying to heal from this major surgery, all while trying to be a good mom and being involved in the NICU. Thankfully, Levi stepped up. He was so amazing during this entire experience, I wouldn't have made it without him. He was being super dad and husband, going back and forth between the NICU and my room.
August 5th and 6th were the worst days of my life. I was being discharged from the hospital on the 5th so we were trying to get our ducks in a row. When we went back to the NICU after shift change, we were immediately stopped by the doctor on that night. She told us that both babies now have stage 4 brain bleeds and that Brodee's had hemorrhaged. Also, that Brodee was having to have another chest tube placed because his lungs still had holes in them from where they were still developing. She told us that we didn't need to go far. She didn't think our son would make it through the night. Again, my heart just shattered. How could God do this to us? Why us? Why them? I was angry and scared. We sat in that dreadful waiting room all night. Our nurse got us a sleep room, so we could try to get some rest. Levi and I walked into this little broom closet with one lamp, no windows, a twin bed that had a twin bed pullout on the bottom. We just sat in silence. I was feeling so many emotions, I didn't know how to deal with it.
The next morning we went to rounds, which is where your team for the day meets and goes over the plan of action for your baby. We sat down with the doctor and he told us that we had hours with our son. I don't even think I cried at this point, Levi said it was like my light had turned off. I was just blank. We were taken to a private room and we sat there all day. The doctors truly did not think Brodee was going to make it. They sent in a Chaplin and we were asked really hard questions. Like, do you want to hold him as he's passing or do you want to hold him after he's gone. Where do you want to send his body. Do you want to dedicate him back to the Lord. Do you want to sign a DNR (which was highly recommended, because if they needed to preform CPR it would crush pretty much everything and cause him more pain) At this point, I felt so hopeless and helpless. All I could do was cry and pray. We were surrounded by family and we were receiving so much support from friends and our community. People everywhere were praying, all over the world. The Chaplin came back to speak with Levi and I again, and we chose to dedicate both babies. Levi, the Chaplin and I went to our NICU space, pulled the curtains and we gave both of them back to God. Once we returned back to our private room, we just sat together and cried. We prayed together.
The night doctor came on who had been in the profession for many years, he sat us down and told us to go get some rest. That he would call us if he thought something was going to happen, but that they were both stable. Hearing those words was like a weight was lifted off my shoulders. He told us that he couldn't predict what was going to happen but that he has seen similar cases where the baby made it. Levi quickly informed him that we serve a really good God and that He was in control. The doctor agreed. We went to the hotel and tried to get some rest. The next few days were still rough but they were improving.
I wish I could say I was a strong Christian at this point, but I can't. I was so angry at God. I didn't understand why, why did this have to happen to my babies. I'm not saying that I was "to worthy" for something like this to happen to me, but they were. They were innocent and perfect. I questioned God. Levi felt the same way at times, but he truly kept me afloat. He would pray with me and talk to me about how I was feeling. He helped guide me and in later days I would do the same for him. It was so hard for me to just "let go and let God." I knew in my heart that He was the one in control and that He could heal them in a blink of an eye- and I think that's why I had such a hard time. I knew He could, so why wasn't He?
Days passed and both of our babies were getting stronger. On day 12 we got to hold our baby girl for the first time. It was so unreal. She was so tiny, I swear I could hold her in one hand. She was so beautiful. A few days later, Brodee got his chest tubes taken out and we were able to hold him. Tears of complete joy for both of them. It was so amazing that these tiny little humans, were kicking butt. The doctors, nurses, and staff were so amazed. God was given all the credit, He was the one who was taking care of them. It wasn't us and it wasn't the staff. Our Father is a good good Father and He was there from the start. We knew we had a long road ahead of us, but even though some days we struggled we knew God had gone before us.
On September 14, we heard Hadlee cry for the first time. She gotten her ventilator taken out and was doing great. Her little cry was the sweetest little noise, I have ever heard. Two days later, Brodee got his ventilator taken out. Again, the sweetest purest little sound. Our hearts were so full those days.
As a new mom one of the things I really struggled with was not getting "the moment". The one I had been dreaming about since the day I found out I was pregnant. The moment where we would have heard their first cries and then the moment they got laid on my chest. I was bitter about that. I was jealous of others who had gotten to have that moment. I felt like I had missed this most amazing moment with my children but I didn't. My moment was different. My moment came days, weeks and even months after my babies were born, but I got my moment. It was the best feeling in the whole world, to feel their little hands on my chest and Brodee loved to touch my face. Our moments look different, but they're ours.
We had been having pretty decent days and the babies had been doing really well. As a NICU parent, you're always on guard. You have really good days and then you have really bad ones. It's like you are on a roller coaster, up and down, back and forth but finally one day you get straightened out.
It was early one morning when got to the NICU and the doctor met me and my father in law at the hand washing station. I said what's wrong, she told me that they were sending Brodee to Charlotte STAT. Tears filled my eyes and I asked why? She said that he has hydrocephalus and blood clots in his arms, he will most likely need a shunt later but for now he will have a VAD (button) placed so they could pull the fluid off until he was big enough to get a shunt. I went and called Levi and told him he need to get back here asap. Levi and my mom loaded up and got to Asheville soon after. This was hard to hear, because I had finally felt good and that things were good. I went and locked myself in the bathroom and I just cried asking God why? What else? I told God I wasn't strong enough for this, I'm tired God. That's when God showed me how strong I really was. I looked at two of the strongest people and they were my children and that is what God was showing me. I had to be strong because they needed me.
Before Brodee left for Charlotte, we got to hold both babies together for the first time. This was the sweetest moment and I will forever cherish it, they reach their hands out and held onto each other. My heart literally melted. Brodee was transported to Charlotte by ambulance. This was one of the more difficult things for me, because we weren't able to ride along. I had to fully trust that they were going to drive safe and get him there with no issues. It's like I wanted to just load him up in the Honda and drive him myself. I felt a lot better once we met our transport team. The transport nurse who was going with Brodee was the "angel", that's what we called her. She carried an old very used bible in her transport jacket. She always came to check on the twins and I knew she was praying for them. Knowing she was going with Brodee made it a littler easier. I don't know this for sure but I think she prayed over him during that ride and talked to him about Jesus. She said that Brodee just looked at her the whole time and didn't get fussy once. I think its because her presence was calming. (check out other post about God sending me an angel)
Charlotte was a different world. They had different rules, so it was an adjustment for us. Brodee had his first surgery a day later, before he went into surgery he got another ultrasound to double check everything prior to surgery. His blood clots were gone, no evidence of them at all. God answered that prayer. Everything went great with his surgery and they sent us back to Mission a week later. During that time my mom stayed everyday with Hadlee. Levi and I would go back to Asheville every other day to spend the day with Hadlee. This was extremely hard on me. I felt like a terrible mom because I needed to be in two places at once. The day we were being discharged back to Mission Brodee was going by airplane. My 1 month old is flying in a plane without me or his dad. I cried the whole drive back to Mission and until they rolled him through the doors back into his spot. When they brought Brodee back in, I promise Hadlee had not made a peep and both of their machines started going off. It was like they were saying thank goodness your back, I missed you.
Before we left Charlotte the doctor came over to talk to Levi and I about Brodee. He said "I am amazed by his progress and although I haven't met sister, they both are extremely strong and tough little ones." Levi and I told him that we serve a good God and the doctor looked at us and said "yes we do, there is two things about your babies 1. they are strong and they are fighters 2. the big man upstairs has huge plans for them." Tears just start flowing, because he was right. God was using our babies in a mighty way and they were only a month old. They were lights for Christ.
A month a had passed and we were working on the babies gaining weight. Hadlee was really struggling and they thought it was because of her PDA (an unclosed hole in her aorta). They ordered another ultrasound, and they found a cyst on her heart. This is extremely rare, rare enough that only 2 doctors out of the 8 on staff had seen it. We had started discussing heart surgery and they ordered an MRI to get a closer look at everything. When we got the results back they told us that her PDA had closed. This was great news. Thank you Jesus, for answering this prayer. The cyst is still there but not causing any issues at this time, so we are just monitoring it. Hadlee started gaining weight and her blood sugars leveled out, which was another answered prayer. She was still only 2 pounds and within 2 weeks she had gained almost 2.5 pounds. Which was huge. Again we were reminded that God was so good and He was in complete control. He is the ultimate healer and He's still in the miracle business. The blueberries are examples of His work.
October was here and we were celebrating Halloween, the blueberries dressed up as blueberries (thank you FHS parenting class for making Halloween costumes for the NICU and special ones for the blueberries.) Shortly after our Halloween celebrations we started preparing for Brodee's transport back to Charlotte for his shunt surgery. I struggled with this because I had been praying so hard that God would just fix it so Brodee wouldn't have to have shunt surgery. I was angry and sad when He didn't answer that prayer, but that's not how it works. God isn't a genie with 3 wishes. God hears every prayer and sees every tear and I had to realize that my way isn't God's way. Pray without ceasing kept running through my mind and that is what we are still doing.
We got the call that there was an open bed in Charlotte and Brodee was transported that day. Having your little baby transported 2 hours away is the scariest thing. My anxiety made it 10x worse than it truly was. Brodee made it safely to Charlotte and went into surgery the following day. This surgery lasted a little over 2 hours and it was the longest 2 hours of my life. We sat in the waiting room watching the screen with his number (they had a screen that showed what stage he was in, along with the other 15+ children ORs.) My eyes were glued to that screen watching it over and over. I do have to brag on the surgery team, we got to meet every single person that would be in there with him and ask any question we wanted to. That did ease my anxiety somewhat. The hardest thing for me was to see my little 5 pound baby boy in his little transport box being wheeled into surgery. After Brodee was back in the NICU resting, Levi and I were going down to the cafeteria to grab some lunch. We stepped into the elevator with a man who was on the phone, he was telling them that his grandchild had been born with half a brain. I could feel my head just drop trying my best to hold back the tears, I felt so selfish. Levi and I got off the elevator and we stopped to pray for that family. Being in a place like Levine Children's hospital, it opens your eyes to so many things. For one, don't take your health for granted or your children for granted. Hug your loved ones, show love and be kind. You really don't know what others are going through.
Recovery was pure hell. Not only was Brodee in pain but he was also hungry. Day 3 of recovery was probably the hardest. As a parent you want to do everything you can to help your child and in this environment, you can't. The NICU makes your feel powerless and it didn't effect me that hard until this day. I was helpless, I couldn't stop his pain, I couldn't feed him and I couldn't comfort him the way he need me to. It was tough for all of us. Brodee was transported back to mission that following day, and he had a great transport team. When they brought Brodee in back from his trip, I was holding Hadlee and they brought Brodee over to me and let them snuggle together. They were both so happy that they were together again.
We were finally back at Mission, our next trip should be the trip home. Brodee was still recovering and we were working him back up to full feeds. Hadlee was still growing good and they were both being worked down on their high flows. Levi and I were praying and hoping that they would be off of oxygen support before we came home, we had set our goal home date to Christmas.
One Saturday morning we came into the NICU and walked around to the babies little spot. There was the doctor and the RTs standing there around the babies, my heart dropped. Levi asked what's going on? The doctor with a huge smile on her face said "you guys are being moved to transition." Transition was the last step before you are discharged home. Our mouths dropped, we both said "are you kidding?" Doctor R said no, "I'm not kidding. We are moving you guys down there today." Transition was so nice because we actually got to stay in the room with them and do all of their cares on our own, it was the first time we actually felt like parents. A few days into transition, we had to schedule Brodee's final surgery before being discharged home. He had surgery the following week to repair a hernia. Doctor S came into our room and told us that if everything goes as planned you all will be discharged Friday, November 29. I just started crying, we are at the end of this long journey. I couldn't believe we were finally going home, as a family. I had been home during the day a couple times during our NICU stay and every time I would walk through the door I felt so empty, but this time I would be walking through our door with my two babies. Our hearts were so overwhelmed with joy and thankfulness.
Friday November 29th. We were discharged from the NICU. 119 days later we were taking our babies home. It was the best feeling in the entire world, walking out of that hospital no longer empty handed. That was the scariest and longest drive from Asheville but when we pulled into our driveway with our little blueberries it was so amazing.
This was the hardest thing Levi and I have ever went through. There were really bad days and there were really good days. We don't understand why things happen the way they do but we do know God has a purpose for everything. Our children are examples of Christ, their testimony is huge. Throughout this journey my faith grew, my relationship with my husband became stronger and I became a stronger christian, wife and mom. Like I said before I wasn't the best christian and I didn't always give it fully to God, because although God was there the whole time so was the devil. The devil tried to break us more than once. Like the evening, I got back to the camper and had locked myself out so I had to call a locksmith but luckily I had just gotten Starbucks and got to watch the sunset or the time Levi and I had just left dinner with two of our friends and our tire blew out on the way back to the camper. Even though we had things happen within our storm, we kept our eyes on Jesus. Our faith ultimately got us through this terrible storm. We listened to a lot of christian music, one of my favorites that I would listen to on repeat was "Every Little Thing" by Hillsong Young & Free. I was also given Craig Groeschel's book "Hope in the Dark, believe God is good when life is not." I would highly recommend that book to anyone who is facing hardship in their life. God is so good, all the time. We all face trials in our lives but we always have to remember to lean on the one who gave us life, He loves us all so much and He will see you though whatever you are going through.
Thank you for taking the time to read about our journey. Thank you to our families, friends, and community for all the prayers, support, and love shown to our little family. We are so humbled and so grateful. The blueberries are doing great, keep praying for them. They are going to do great things.
xo.
When we got to Harris hospital in Sylva, they put me on an NST machine which measures the babies heartbeats and contractions. Both babies hearts looked great, which was a huge relief. They kept me on the machine for a little while and both babies heartbeats looked great, so they were fixing to send me home. The midwife who had been monitoring me asked if she could do a pap smear since I hadn't had one during my pregnancy yet. I agreed, she asked me to go to the bathroom and this time I could feel something and a lot of pressure. I came out and I told the student who was working with the midwife and she got me back in bed. Levi was standing next to me watching as a nurse, student, and midwife was checking everything out down there, and we knew something was wrong by the look on their faces. The midwife said "SH** get the doctor STAT, Levi and Taylor we're having babies today." The only thing I kept say was it's to early they are only only 23 weeks. Panic, fear, and shock took over. As the midwife stepped out the student came over to us and asked if we were religious, we answered yes and she asked if she could pray over us. The midwife came back into the room and said they were sending me to Mission. Levi left with my mom to be there when I got there, my sister stayed behind with me. They were sticking me with needles, IVs, checking my BP etc. while they had me laid back with my feet in the air. I was 10 cm dilated and the sack was right there. Soon the paramedics came in and had me loaded up within minutes, the male paramedic told me that it was going to be a bumpy ride but he was going to get me there. We were not having these babies in here. We hit the road. The midwife rode with me along with the female paramedic, they were both trying their best to calm me and keep my mind off what was actually happening.
We made it to Mission in 33 minutes. When the doors opened there stood Levi, thank goodness. We went through the double doors up to a room where it was full of doctors, nurses, respiratory therapist, ultrasound techs and many more. As soon as I came through the door they were changing out my IVs, giving me more shots, trying to get an ultrasound and who knows what else. The doctor who was assigned my case sat down on my bed with tears in her eyes. She told us they couldn't find the heartbeat of baby A, Hadlee. She said I'm so sorry but she's gone, and we need to move fast. You have 3 options. 1. let nature take its course (they were hoping to deliver Hadlee vaginally, and hopefully keep Brodee in longer) 2. have a normal c-section (this would get Hadlee out but would most likely kill Brodee) 3. have a classical c-section (this would hopefully get both babies out) and then she said you have 5 minutes. The room was silent, I swear you could hear every ones hearts beating, Levi looked at her and told her "you do whatever you have to do to save my wife and two children." When those words left his mouth, we were gone. I was hysterical at this point, scared and in complete shock. When we got to the double doors a man stopped Levi, all I could hear was Levi saying " I love you Taylor. I love you."
I got into the OR where there was even more people including two NICU teams. They were hooking me up to everything while going over my case. All I could do was lay there, I couldn't speak and I wish I could say I was praying but I was in complete shock at what was happening, I was just told my daughter was already gone to heaven and that my son had a slim chance of making it as well. The anesthesiologist kept me calm though, he was so kind. I was laying on the table and he just kept saying "Taylor it's just you and me, don't worry about what's going on around you. Just keep your eyes on me. I'm going to take care of you." I heard the doctor say "I'm ready to cut" and then the anesthesiologist looked me in the eyes and said "you're going to go to sleep now but I'll be here the whole time."
I was taken back into surgery around 11:40 am both babies were born at 11:49 am. Levi, my mom and sister were out in the waiting room. My mom said that Levi was doing his best to hold it together, they were all praying and crying. Mom said that Levi was on the phone with his sister and that they both were praying when the first NICU doctor came out. Doctor B asked where dad was, Levi hung up and said I'm dad and doctor B said "would you like to meet your baby girl?" Levi asked if she was alive, and she said "yes, she's alive" my mom said Levi just hit the floor. Levi said shortly after here came little Hadlee bug, he said she was so small but so beautiful. Right behind Hadlee came doctor H and Brodee bug. Doctor H took Levi up with him to the NICU. Levi said he just stood there watching 8 nurses, 4 RTS, NPs and 2 doctors go to work. They were hooking both babies up to so many machines, ordering X-rays, blood work etc. Doctor H & B pulled Levi aside and told him they were amazed by how well our babies did. They told Levi that they both breathed on their own, did not require CPR and maintained their body temperatures for 10 minutes- they said that is unheard of, especially not having to be resuscitated. They were amazed that they both were alive. God was there the whole time, He was in that operating room, He took care of our little miracles.
I came out of surgery around 1:00 pm, they had to do a classical c-section but because Hadlee was so low and Brodee was up high they had to cut me more than expected. I was in recovery and I had finally woken up a little, Levi was sitting next to me. I could tell he had been crying so I asked what happened? He said "you did it baby, both of our babies are alive and doing well." I cannot even explain the amount of relief and thankfulness I felt, Levi and I just cried and thanked God.
My nurses took me up to meet my babies for the first time, I was still pretty loopy but I will never forget how tiny yet how so beautiful they were. Even at 23 weeks, they had everything. All of their organs, 10 fingers, and 10 toes. They were so perfect. God's most beautiful creation and they were mine.
The next few days were hard. Trying to adjust to not being pregnant anymore and trying to heal from this major surgery, all while trying to be a good mom and being involved in the NICU. Thankfully, Levi stepped up. He was so amazing during this entire experience, I wouldn't have made it without him. He was being super dad and husband, going back and forth between the NICU and my room.
August 5th and 6th were the worst days of my life. I was being discharged from the hospital on the 5th so we were trying to get our ducks in a row. When we went back to the NICU after shift change, we were immediately stopped by the doctor on that night. She told us that both babies now have stage 4 brain bleeds and that Brodee's had hemorrhaged. Also, that Brodee was having to have another chest tube placed because his lungs still had holes in them from where they were still developing. She told us that we didn't need to go far. She didn't think our son would make it through the night. Again, my heart just shattered. How could God do this to us? Why us? Why them? I was angry and scared. We sat in that dreadful waiting room all night. Our nurse got us a sleep room, so we could try to get some rest. Levi and I walked into this little broom closet with one lamp, no windows, a twin bed that had a twin bed pullout on the bottom. We just sat in silence. I was feeling so many emotions, I didn't know how to deal with it.
The next morning we went to rounds, which is where your team for the day meets and goes over the plan of action for your baby. We sat down with the doctor and he told us that we had hours with our son. I don't even think I cried at this point, Levi said it was like my light had turned off. I was just blank. We were taken to a private room and we sat there all day. The doctors truly did not think Brodee was going to make it. They sent in a Chaplin and we were asked really hard questions. Like, do you want to hold him as he's passing or do you want to hold him after he's gone. Where do you want to send his body. Do you want to dedicate him back to the Lord. Do you want to sign a DNR (which was highly recommended, because if they needed to preform CPR it would crush pretty much everything and cause him more pain) At this point, I felt so hopeless and helpless. All I could do was cry and pray. We were surrounded by family and we were receiving so much support from friends and our community. People everywhere were praying, all over the world. The Chaplin came back to speak with Levi and I again, and we chose to dedicate both babies. Levi, the Chaplin and I went to our NICU space, pulled the curtains and we gave both of them back to God. Once we returned back to our private room, we just sat together and cried. We prayed together.
The night doctor came on who had been in the profession for many years, he sat us down and told us to go get some rest. That he would call us if he thought something was going to happen, but that they were both stable. Hearing those words was like a weight was lifted off my shoulders. He told us that he couldn't predict what was going to happen but that he has seen similar cases where the baby made it. Levi quickly informed him that we serve a really good God and that He was in control. The doctor agreed. We went to the hotel and tried to get some rest. The next few days were still rough but they were improving.
I wish I could say I was a strong Christian at this point, but I can't. I was so angry at God. I didn't understand why, why did this have to happen to my babies. I'm not saying that I was "to worthy" for something like this to happen to me, but they were. They were innocent and perfect. I questioned God. Levi felt the same way at times, but he truly kept me afloat. He would pray with me and talk to me about how I was feeling. He helped guide me and in later days I would do the same for him. It was so hard for me to just "let go and let God." I knew in my heart that He was the one in control and that He could heal them in a blink of an eye- and I think that's why I had such a hard time. I knew He could, so why wasn't He?
Days passed and both of our babies were getting stronger. On day 12 we got to hold our baby girl for the first time. It was so unreal. She was so tiny, I swear I could hold her in one hand. She was so beautiful. A few days later, Brodee got his chest tubes taken out and we were able to hold him. Tears of complete joy for both of them. It was so amazing that these tiny little humans, were kicking butt. The doctors, nurses, and staff were so amazed. God was given all the credit, He was the one who was taking care of them. It wasn't us and it wasn't the staff. Our Father is a good good Father and He was there from the start. We knew we had a long road ahead of us, but even though some days we struggled we knew God had gone before us.
On September 14, we heard Hadlee cry for the first time. She gotten her ventilator taken out and was doing great. Her little cry was the sweetest little noise, I have ever heard. Two days later, Brodee got his ventilator taken out. Again, the sweetest purest little sound. Our hearts were so full those days.
As a new mom one of the things I really struggled with was not getting "the moment". The one I had been dreaming about since the day I found out I was pregnant. The moment where we would have heard their first cries and then the moment they got laid on my chest. I was bitter about that. I was jealous of others who had gotten to have that moment. I felt like I had missed this most amazing moment with my children but I didn't. My moment was different. My moment came days, weeks and even months after my babies were born, but I got my moment. It was the best feeling in the whole world, to feel their little hands on my chest and Brodee loved to touch my face. Our moments look different, but they're ours.
We had been having pretty decent days and the babies had been doing really well. As a NICU parent, you're always on guard. You have really good days and then you have really bad ones. It's like you are on a roller coaster, up and down, back and forth but finally one day you get straightened out.
It was early one morning when got to the NICU and the doctor met me and my father in law at the hand washing station. I said what's wrong, she told me that they were sending Brodee to Charlotte STAT. Tears filled my eyes and I asked why? She said that he has hydrocephalus and blood clots in his arms, he will most likely need a shunt later but for now he will have a VAD (button) placed so they could pull the fluid off until he was big enough to get a shunt. I went and called Levi and told him he need to get back here asap. Levi and my mom loaded up and got to Asheville soon after. This was hard to hear, because I had finally felt good and that things were good. I went and locked myself in the bathroom and I just cried asking God why? What else? I told God I wasn't strong enough for this, I'm tired God. That's when God showed me how strong I really was. I looked at two of the strongest people and they were my children and that is what God was showing me. I had to be strong because they needed me.
Before Brodee left for Charlotte, we got to hold both babies together for the first time. This was the sweetest moment and I will forever cherish it, they reach their hands out and held onto each other. My heart literally melted. Brodee was transported to Charlotte by ambulance. This was one of the more difficult things for me, because we weren't able to ride along. I had to fully trust that they were going to drive safe and get him there with no issues. It's like I wanted to just load him up in the Honda and drive him myself. I felt a lot better once we met our transport team. The transport nurse who was going with Brodee was the "angel", that's what we called her. She carried an old very used bible in her transport jacket. She always came to check on the twins and I knew she was praying for them. Knowing she was going with Brodee made it a littler easier. I don't know this for sure but I think she prayed over him during that ride and talked to him about Jesus. She said that Brodee just looked at her the whole time and didn't get fussy once. I think its because her presence was calming. (check out other post about God sending me an angel)
Charlotte was a different world. They had different rules, so it was an adjustment for us. Brodee had his first surgery a day later, before he went into surgery he got another ultrasound to double check everything prior to surgery. His blood clots were gone, no evidence of them at all. God answered that prayer. Everything went great with his surgery and they sent us back to Mission a week later. During that time my mom stayed everyday with Hadlee. Levi and I would go back to Asheville every other day to spend the day with Hadlee. This was extremely hard on me. I felt like a terrible mom because I needed to be in two places at once. The day we were being discharged back to Mission Brodee was going by airplane. My 1 month old is flying in a plane without me or his dad. I cried the whole drive back to Mission and until they rolled him through the doors back into his spot. When they brought Brodee back in, I promise Hadlee had not made a peep and both of their machines started going off. It was like they were saying thank goodness your back, I missed you.
Before we left Charlotte the doctor came over to talk to Levi and I about Brodee. He said "I am amazed by his progress and although I haven't met sister, they both are extremely strong and tough little ones." Levi and I told him that we serve a good God and the doctor looked at us and said "yes we do, there is two things about your babies 1. they are strong and they are fighters 2. the big man upstairs has huge plans for them." Tears just start flowing, because he was right. God was using our babies in a mighty way and they were only a month old. They were lights for Christ.
A month a had passed and we were working on the babies gaining weight. Hadlee was really struggling and they thought it was because of her PDA (an unclosed hole in her aorta). They ordered another ultrasound, and they found a cyst on her heart. This is extremely rare, rare enough that only 2 doctors out of the 8 on staff had seen it. We had started discussing heart surgery and they ordered an MRI to get a closer look at everything. When we got the results back they told us that her PDA had closed. This was great news. Thank you Jesus, for answering this prayer. The cyst is still there but not causing any issues at this time, so we are just monitoring it. Hadlee started gaining weight and her blood sugars leveled out, which was another answered prayer. She was still only 2 pounds and within 2 weeks she had gained almost 2.5 pounds. Which was huge. Again we were reminded that God was so good and He was in complete control. He is the ultimate healer and He's still in the miracle business. The blueberries are examples of His work.
October was here and we were celebrating Halloween, the blueberries dressed up as blueberries (thank you FHS parenting class for making Halloween costumes for the NICU and special ones for the blueberries.) Shortly after our Halloween celebrations we started preparing for Brodee's transport back to Charlotte for his shunt surgery. I struggled with this because I had been praying so hard that God would just fix it so Brodee wouldn't have to have shunt surgery. I was angry and sad when He didn't answer that prayer, but that's not how it works. God isn't a genie with 3 wishes. God hears every prayer and sees every tear and I had to realize that my way isn't God's way. Pray without ceasing kept running through my mind and that is what we are still doing.
We got the call that there was an open bed in Charlotte and Brodee was transported that day. Having your little baby transported 2 hours away is the scariest thing. My anxiety made it 10x worse than it truly was. Brodee made it safely to Charlotte and went into surgery the following day. This surgery lasted a little over 2 hours and it was the longest 2 hours of my life. We sat in the waiting room watching the screen with his number (they had a screen that showed what stage he was in, along with the other 15+ children ORs.) My eyes were glued to that screen watching it over and over. I do have to brag on the surgery team, we got to meet every single person that would be in there with him and ask any question we wanted to. That did ease my anxiety somewhat. The hardest thing for me was to see my little 5 pound baby boy in his little transport box being wheeled into surgery. After Brodee was back in the NICU resting, Levi and I were going down to the cafeteria to grab some lunch. We stepped into the elevator with a man who was on the phone, he was telling them that his grandchild had been born with half a brain. I could feel my head just drop trying my best to hold back the tears, I felt so selfish. Levi and I got off the elevator and we stopped to pray for that family. Being in a place like Levine Children's hospital, it opens your eyes to so many things. For one, don't take your health for granted or your children for granted. Hug your loved ones, show love and be kind. You really don't know what others are going through.
Recovery was pure hell. Not only was Brodee in pain but he was also hungry. Day 3 of recovery was probably the hardest. As a parent you want to do everything you can to help your child and in this environment, you can't. The NICU makes your feel powerless and it didn't effect me that hard until this day. I was helpless, I couldn't stop his pain, I couldn't feed him and I couldn't comfort him the way he need me to. It was tough for all of us. Brodee was transported back to mission that following day, and he had a great transport team. When they brought Brodee in back from his trip, I was holding Hadlee and they brought Brodee over to me and let them snuggle together. They were both so happy that they were together again.
We were finally back at Mission, our next trip should be the trip home. Brodee was still recovering and we were working him back up to full feeds. Hadlee was still growing good and they were both being worked down on their high flows. Levi and I were praying and hoping that they would be off of oxygen support before we came home, we had set our goal home date to Christmas.
One Saturday morning we came into the NICU and walked around to the babies little spot. There was the doctor and the RTs standing there around the babies, my heart dropped. Levi asked what's going on? The doctor with a huge smile on her face said "you guys are being moved to transition." Transition was the last step before you are discharged home. Our mouths dropped, we both said "are you kidding?" Doctor R said no, "I'm not kidding. We are moving you guys down there today." Transition was so nice because we actually got to stay in the room with them and do all of their cares on our own, it was the first time we actually felt like parents. A few days into transition, we had to schedule Brodee's final surgery before being discharged home. He had surgery the following week to repair a hernia. Doctor S came into our room and told us that if everything goes as planned you all will be discharged Friday, November 29. I just started crying, we are at the end of this long journey. I couldn't believe we were finally going home, as a family. I had been home during the day a couple times during our NICU stay and every time I would walk through the door I felt so empty, but this time I would be walking through our door with my two babies. Our hearts were so overwhelmed with joy and thankfulness.
Friday November 29th. We were discharged from the NICU. 119 days later we were taking our babies home. It was the best feeling in the entire world, walking out of that hospital no longer empty handed. That was the scariest and longest drive from Asheville but when we pulled into our driveway with our little blueberries it was so amazing.
This was the hardest thing Levi and I have ever went through. There were really bad days and there were really good days. We don't understand why things happen the way they do but we do know God has a purpose for everything. Our children are examples of Christ, their testimony is huge. Throughout this journey my faith grew, my relationship with my husband became stronger and I became a stronger christian, wife and mom. Like I said before I wasn't the best christian and I didn't always give it fully to God, because although God was there the whole time so was the devil. The devil tried to break us more than once. Like the evening, I got back to the camper and had locked myself out so I had to call a locksmith but luckily I had just gotten Starbucks and got to watch the sunset or the time Levi and I had just left dinner with two of our friends and our tire blew out on the way back to the camper. Even though we had things happen within our storm, we kept our eyes on Jesus. Our faith ultimately got us through this terrible storm. We listened to a lot of christian music, one of my favorites that I would listen to on repeat was "Every Little Thing" by Hillsong Young & Free. I was also given Craig Groeschel's book "Hope in the Dark, believe God is good when life is not." I would highly recommend that book to anyone who is facing hardship in their life. God is so good, all the time. We all face trials in our lives but we always have to remember to lean on the one who gave us life, He loves us all so much and He will see you though whatever you are going through.
Thank you for taking the time to read about our journey. Thank you to our families, friends, and community for all the prayers, support, and love shown to our little family. We are so humbled and so grateful. The blueberries are doing great, keep praying for them. They are going to do great things.
xo.
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