“Let Jesus Take the Wheel.” That’s the first thought that comes to my mind as I sit here in the NICU with tears in my eyes while I type the journey we have been on the past 4 weeks.
March 27th was a day I counted down for quite a while. The day we would finally meet our little princess and be a family of four. We were on cloud nine as the day approached, and our family was finally in town. Little did we know that our lives would be turned upside down in a matter of hours.
I can’t explain the feeling I had as nurses prepped me for my c-section the morning of delivery; the feeling of nervousness; the feeling that something just wasn’t right. (Was it God preparing me?) As I was wheeled into the operating room, my anxiety was in full force. Once I saw Nick walk in the operating room doors in his blue scrubs, I knew it was go time and I needed to be strong. In a matter of minutes, I saw the smile and excitement on my soul mate’s face turn to fear and paleness covered him. In the background I will never forget the words from my sweet nurse, ” I need to page the NICU now!” I can’t explain the thoughts going through my head as I glanced over and saw my precious baby, who was purple, surrounded by doctors and being rushed through the operating room doors to the NICU. I remember frantically telling Nick, “Don’t worry about me, please go with Ellie.” All I could do is pray and cry as I laid on the cold metal table alone waiting for doctors to sew me back together. As they wheeled me out of the operating room to recovery, they made a stop by the NICU for me to see Ellie. It was a breath of fresh air to see her beautiful face, but to see her struggling to breathe was something I will never forget.
Although we knew something was wrong, nothing could prepare us for what was about to happen. Later that night, Nick would walk back in the NICU to check on Ellie and see a team of doctors surrounding her bed because she was crashing. It’s hard to recall the following 48 hours at this point, because it was probably the hardest times we have faced in our life. We will always remember (And forever be thankful for) the Neonatologist over Ellie’s care and the words he spoke to us in the darkest time. It was so hard to hear Ellie’s doctor say, “Your daughter is in very critical condition and we have to take things hour by hour at this point.” That’s not the answer any parent wants to ever hear. We immediately wanted answers, to know what the future holds. Ellie’s future seemed so unclear. There was one thing that was clear in the next words out of her doctors mouth. “I believe in a higher power, and all I can say is you need to pray that God will help guide me in diagnosing and treating your daughter.” As hard as that answer was for us to hear, it was the biggest reminder that our God hasn’t left our side and there was hope. We just needed to let Jesus take the wheel and keep the faith! Having a doctor praying for guidance on treating our child and asking for prayers was a true blessing.
As hours and days passed, we stayed in prayer and waited for news on what Ellie’s future held. It took everything I had to gain the strength to get in a wheel chair after surgery so I could go to the NICU to see her precious face once again. Over several days, we spent endless hours staring at her while she struggled to breathe. She was hooked up to a ventiallator with more cords, tubes, and iv’s than I have ever seen before. After several tests and the collaboration from a team of doctors, it was suspected that Ellie had a Congenital Diaphragmatic Hernia (CDH). A condition in which a hole in the diaphragm allows abdominal organs (in Ellie’s case her liver) to move into the chest and restrict lung development. How bad was this hernia? How much damage was caused? All questions that couldn’t be answered. Our goal and only hope at this point was to get Ellie’s hypertension under control and get her breathing stronger on her own so she could undergo surgery.
Nick and I were a little more at peace knowing their was a plan of treatment for Ellie and that she had a possible diagnosis. At the same time though, it was also hard to fathom that we would soon be walking out of the hospital doors empty handed and leaving behind our precious gift from God. I spent five nights in the hospital due to complications I was having myself, so I never realized how hard the day I was discharged would be. Going home to see my precious little boy was refreshing, but the sadness on his face because he hasn’t been able to meet his little sister, the empty car seat in the back seat and a bassinet that would set empty was a tough thing to overcome. We easily found peace though every time we thought about Ellie and all the wonderful blessings God has done for her thus far. This was just a little hiccup in the road and we needed to keep our faith up!
Day 8 rolled around and it was the day Ellie was finally strong enough to take on surgery. I never knew how scary this day would be. It was probably the second hardest day for us looking back. As I walked into the NICU the morning of surgery all I could do is cry and stare at this beautiful 7 pound baby who was such a fighter. I haven’t even had the chance to hold her, kiss her and tell her how much she was loved. Seeing code blue instructions taped to her bed and knowing in a few short hours our baby girl would be undergoing a major surgery to pull her diaphragm and liver down so her right lung had room to develop, seemed to much to bare.
There were so many unanswered questions leading to surgery I still had, but I knew it was all in God’s hands. Sometimes as a Christian, that’s a hard thing to accept when your at your lowest, but as all the pieces to our puzzle have fallen in place, Nick and I are one hundred percent positive we are still living in God’s great big plan for us. It’s all in his timing. You see, out of this huge city we so happened to deliver Ellie at a hospital with the largest level NICU center and some of the best doctors/surgeons in the country for her diagnosis. This hospital wasn’t the closest to where we live and I actually didn’t prefer it, but it’s the only place my OBGYN (that I found while randomly GOOGLE searching) delivers. We actually pass 2 hospitals in our 25 minute route to the hospital. Not only that, the actual lead surgeon that was over Ellie’s procedure is one of the top doctors in the world specializing in CDH patients.
As the time came for Ellie’s surgery, we followed the team of doctors towards the operating room. I am beyond thankful for this team of doctors who volunteered to take Ellie past the waiting room so Dawson could finally get his chance to see his little sister. Dawson was thrilled to get to see her, but it was obvious that the health Ellie was in was not what he really imagined. It wasn’t as magical as we dreamt of when the two would finally meet. Although not knowing what the future held for Ellie, it was a blessing at the time for him.
Nick, myself and our families watched the clock tick for almost three hours waiting on news of Ellie’s surgery. It was a sign of relief to finally see the surgeon walk through the operating room doors with a smile on his face. It was confirmed that Ellie had CDH on her right side. The chances of developing CDH is rare, and it’s even more rare to have the hernia on your right side. The survival rate is pretty low. To hear her surgeon say that she had plenty of lung and the surgery was success was the best news we could ask for. We were also told that Ellie is very lucky and she had a membrane covering the hernia which prevented all her organs from pushing up into her chest. The surgeon told us without that membrane, we would be having a different conversation than what we were. To make it clear, Ellie was simply saved by God’s grace!! She’s a fighter and has already taught us all so much.
We knew that this surgery wasn’t something that Ellie was going to overcome in a short time and that we had a long road ahead. We were surprised everyday to see how much she was fighting to beat this. It took Ellie 6 days post-surgery to come off of the ventilator, and it was an amazing day for us all. We finally could hold our sweet baby girl. It had been a long two weeks since she was born and there was nothing better than to hold her sweet little body in our arms for the first time.
Every morning I couldn’t wait to get to the hospital to hold my baby girl, tell her how proud I was, how much she was loved and to please keep getting stronger. It’s something I still do everyday. As I walk through the NICU daily, I am constantly reminded that God has not left our side. We give him all the praise for Ellie’s health.
In all honesty, the past 4 weeks have been a complete emotional roller coaster not knowing what the next day holds. From good days to bad days it all comes and goes. The road to healing and overcoming CDH hasn’t been easy, but we are beyond blessed that she’s as healthy as she is. Ellie may not ever be a marathon runner or the best soccer player. She will more than likely be short winded, but at this point in her prognosis she is expected to make a full recovery! We will have frequent doctor appointments and x-rays to make sure her diaphragm hasn’t moved and everything is still in place for quite a long time. There also is a chance that the hernia could re-occur, but we are letting Jesus take the wheel!
We never once imagined that we would spend Easter in the NICU and not as a family of four, but God has taught us so much these past several weeks. There are no words to express how grateful we are for all of our blessings and everything he has done for us. When you walk through the NICU doors that holds 80+ babies, it’s hard not to fall on your knees and praise God for all the miracles he’s making happen. We have met so many wonderful families, and their stories are incredible. We have watched some families come and go and cheered them on as they finally were headed on their journey home. We are hopeful our day will soon come where we will be loading up our sweet baby girl and heading home. Until then I will be thankful and blessed for our time in the NICU. Please keep praying for our precious Ellie Anna. She has come so far, and we are so proud of her! Also please pray for all of the precious babies in the NICU and their parents. Some babies have much longer roads of healing ahead than Ellie, and I know their parents need prayers as well. One day I hope to share with you some of the stories from the families we have met. The power of God is incredible for sure!
As a I wrap up our first month of this journey, I wanted to share some pictures of our milestones with Ellie. I want to be honest. Nick and I have been so hesitant of sharing our pictures of Ellie with tubes and the shape she was in. As I began to write this blog, I realized that those pictures, although hard for us to see, share an amazing story and journey. Most importantly, they show how our God never leaves us. He is the great physician, and his work is nothing short of a miracle.
3/27/14 Ellie’s journey began. | 1 week old
8 days old. Surgery day for Ellie. The first time Dawson was ever able to see her.
Our 1st time to hold Ellie. She was 2 weeks old!
3 weeks old and finally tube free!
This picture takes our breath away. Our hearts are so full! Thanks to some amazing nurses who made this moment possible. They made a huge exception and made it possible for Dawson to see Ellie for a few minutes on Easter!! He was speechless and completely in love!! This was the first time Dawson was able to hold Ellie. The smile on his face never left. This sweet boy’s world has been turned upside down trying to grasp everything that has been going on. We were so happy to hear Dawson say this was the best day ever!!!
(Ellie’s nenny had to take a few photos and play dress up in the NICU.)