A Christmas Miracle: Days 43-51

 

Saturday, December 21st was truly the hardest day of our family's life.  I know I have said that before and I really hope I never have to say that again.  This NICU roller coaster just keeps going down for us and it is harder and harder to see the light at the end of the tunnel.  But I am happy to report that our beautiful son Benton is still here with us, fighting.  He is such an amazingly strong boy and we could not be prouder of him for enduring everything he has been through. We love him so much. Right now he is still extremely critical, on 100% maximum life support due to very severe lung disease and a new infection.  We will never stop believing in our little man and we continue to pray that he will keep fighting during this extremely hard time so that one day we can be a happy family. Here is the back story from the trials we went through this past week. 

 

On the Saturday before Christmas I felt a deep pit in the bottom of my stomach.  Despite the fact that I had just called to see how our little man was doing, I felt like I needed to rush to the NICU so I got dressed and didn't even bother to dry my hair despite the frigid temperatures.  When we got to the NICU that Saturday morning I was relieved to see that Benton was sating well despite being on 100% oxygen.  I was able to breathe for a moment and enjoy reading to my favorite little man while Joe went to grab sandwiches.  However, within minutes his condition began deteriorating.  With his oxygen, nitrous oxide and dopamine at maximum levels his saturations started dropping from the 90s to the 80s to the 70s to the 60s and finally into the 50s for no apparent reason.  With him already on maximum support there was nothing else the doctors could do to stabilize him.  As my dad went to call Joe to rush back to the hospital my family and I stood next to his incubator and prayed for him to rebound - telling him he could do it and how much we all love him.

As we watched in terror his oxygen saturations just kept getting lower and lower; I kept asking the doctors if there was anything else they could do.  With grim faces the doctors told us "No.  All you can do now is hold him, comfort him and say goodbye."  The attending doctor explained that this was Benton's way of letting go. That his little fragile body could not take anymore and since his numbers were not bouncing back, he will not make it. She told us that we needed to hold him now, that she didn't want us to lose that chance to hold our baby while he was still here.  I started begging and pleading that there must be something else they could do but they insisted there was not and all we could do was hold him and tell him that we love him.  To say we were completely heartbroken is the understatement of the century. We did not want our poor baby to suffer anymore but so badly wanted to spend more time with him, to love him and watch him grow up. We weren't ready yet, it was just too soon. He was born just too soon.

 

After weeping and realizing the enormity of this moment in our child's life, we decided we should hold him and comfort him.  Even though Benton was already 6 weeks old, Joe had still not held Benton since he was so fragile and sick.  I told Joe that he needed to hold Benton before he passed; that he needed that moment to bond with his son.  So the nurses helped to put Benton in Joe's arms.  It was such a scary and beautiful moment to see Joe hold Benton for the first time as we were telling him goodbye.  We sat with Benton telling him everything from our heart, how much we love him, our dreams of him growing into a healthy young boy and our life as a happy family. It was so heartbreaking but we knew the situation was dire and we wanted to savor every last moment we had with our lovely, beautiful baby boy.  The attending doctor, Dr. Ramasethu, said he could pass very fast or it could take a couple of days.  

Joe holding his son for the first time.

Saying goodbye.

 

After Joe was done holding our beautiful son, I was finally able to hold my baby on my chest, his tubes and wires carefully placed around me connected to all the monitors we all nervously watched, terrified of what the numbers would say as he fluctuated between sating and desating.  Holding my baby boy was the best feeling in the world, feeling his heartbeat along with mine, kissing his warm, peachfuzz head. As I sat there with him clutched to my chest, I felt like I was dying inside thinking that this would be my last time holding him.  Surrounded by our family we talked to Benton all day long as he laid on my chest, reading him his favorite stories, telling him how much we love him, sobbing uncontrollably and sleeping together.  In the span of less than two days I spent over 33 hours holding my amazing son attempting to say goodbye to a little life that was to be taken too soon.

 

 

 

With Joe at my side and with the support of my sister, mom, dad, and mother-in-law we spent four straight days in the NICU as we all said goodbye to Benton and tried to deal with this impending loss. Without my family's support I don't think I would have made it through those very dark days.

 

Miraculously, while we were holding him his saturation levels went up into the 90s.  When the  attending doctor arrived the following morning and saw we were still holding our son, and he was actually sating well, she was very impressed.  She hadn't expected him to make it through the night. Since holding him seemed to be helping, whenever he had another episode of lower saturation levels we continued to do kangaroo care.  Each time we held him his saturation levels would bounce back into the 90s.  The doctors said that they were befuddled, that while studies had shown that kangaroo care does help development in premature babies they had never seen such an extreme case of improvement like Benton's.   

Since Benton was starting to stabilize and sat better the attending doctor said she wanted to do a brain scan to see if the oxygen depletion had caused him major long term brain damage.  The doctor said that if she saw major damage, she felt continuing treatment would be futile. We were so scared for them to do the brain ultrasound because usually Benton desats during the procedure. Luckily he did really well during the scan and when the doctor got the results she was happy to say there had been minimal change from the original scan. We were thrilled at this news, the doctor said that as long as Benton is continuing to fight to be here with us, the hospital will keep fighting for him.  It was amazing to hear that the doctors weren't going to give up.  Even though we had a glimmer of hope in our hearts the doctors made a big point of saying that he has still has an extremely long, hard road ahead of him, and that he is still very much teetering on the edge of life.

 

Over the next few days leading up to Christmas, each day we spent all day with our little man holding him every time he de-sated.  Each night I slept with him in my arms with Joe sitting next to us in a rocking chair.  We wanted to get as much time as possible with our little one in case that day might be his last, but with each passing day he started to improve.  In the words of one of his nurses, "Benton's made a U-turn".  As each day passes he has been coming down on almost all of his supports.  His dopamine, oxygen, nitrous oxide and hydrocortisone are all being weened.  His latest echocardiogram showed that there has been a slight improvement in the pressures in his heart and lungs.  In addition, they have also said that his kidneys have now returned to completely normal functioning and his urine output has been very stable.  He still has a lot of edema, but that seems to be slowly coming off and moving in right direction.  All in all, we couldn't have asked for a better Christmas miracle and we are still praying for continued improvement and progress.

Sleeping with our little miracle.

This Christmas we count our blessings and are so thankful that he is still here with us and that the power of our love and skin to skin contact was the medicine he truly needed.  It makes me feel so good to know that I can hold Benton and give him the love and care that he needs to grow and survive. Kangaroo care is amazing and I am forever grateful that Joe and I were able to hold our son as he went through this terribly horrible time.

 

We truly appreciate all your prayers, love and healing energy being sent our beautiful son's way. We have a very long road ahead of us but we are forever grateful he is still here.

Trying to be strong.