Planning the trip was to ensure that I had time to spend with the Mama, to listen, to pray, to love and support her as I believe anyone who has been in the hospital knows the stay is never fun. As we were all told, she was going to be there for a while. Having everything handled on the home front I planned the weekend trip which to my surprise became more. Thinking I was going to spend time with Mama, nope I arrived to find that Mama started contracting and baby was soon on its way….16 weeks early. All I wanted was everyone to be okay, my prayers became repetitive as I felt so helpless. Sitting in the waiting area, I researched everything on premature deliveries that I could…somethings I had trouble reading while there were some amazing stories. Plus we have an amazing story with our own micro preemie. I continued to pray over and over that Mama and baby would be okay and if any storm would come that we would all make it through.
Little did I know at the time, the storm carrying a precious baby boy, who would be soon joining our family, was right in the tail spin of a hurricane. I had quickly became his anchor trying everything to find a way to get him out. Never in wildest dreams did I think when I planned my “quick trip” any of this was to come. I am a planner (most of time); however, having a large family things are not always easily done. Our schedule has something always from therapy, appointments, school, outings just something. I reluctantly flew home on a Sunday, vastly greeting home by pitter pat of feet and a thousand Mama’s, along with a whirlwind of emotions. My heart felt for the first mama that I have grown to love and our son who was laying in an isolete without any one there except medical staff. The hurricane was only getting stronger all the while all I could think was I was a failure, I was not there to protect him, I was not there stalking his isolete to let him know that he had a family waiting...this big crazy family who loves him.
Then it all started less than eight hours from being home, a call that I wish upon no one.
First of many of doctors expressing their concerns of overall prognosis or the possibility he just may not make it through the night. The more the doctor spoke the more I silently prayed while trying to listen to the umpteen medical terms. The conversation concluded as to what should and should not be done. All the while, I knew I needed to get back to the NICU. However the need was overwhelmed with a burning need knowing we needed to travel as a family. At the time I was not sure why but I so knew it needed to happen but I will soon realize the decision for all of us to go was one of the best decisions I made.
Sitting down with my husband, David, we figured out the best way to travel with all the Little's, some of our older kiddos and work around work, daily therapies and appointments that have been on the calendar for months. The trip was set but as each day came so did the daily calls from the doctors and the grime reality of he may not make it through the next hour. There came a point I did not want to answer the phone, I insistently prayed and asked for “prayer warriors” to cover our baby boy. Posted daily on social media asking for help in prayer to the specific needs as the doctors gave their updates. It seemed there was always a time in the day, we were told he just not might make the next hour. Thus prompting my husband to reached out to family that lived near the hospital; asking them to please go and be with our little guy as we did not want him to be alone if things were really going in a downward spiral. I cannot thank you them enough for dropping everything on a moments notice and getting the hospital until we could get there.
In the mean time, I changed our travel plans our already set plans to leave sooner, cancelled most everything on the calendar and loaded our car and set out for where our baby who was without his Mama and family. When we finally arrived, I settled all in the hotel with our older daughter, allowing me to arrive in the NICU in the wee hours of the morning. Greeted by his nurse, a respiratory therapist all I saw was the beautiful most amazing baby boy who was fighting to live. By this time, he did not look like the little boy who I left that previous Sunday. Only three days had went by and he was edemic where I wanted to take a pin to pop him, he was not moving, he was so small with so many tubes and wires encumbering his little body. I just wanted to trade places. I wanted him to beat the E coli infection that was ravaging his system.
As there was a part of our stay where we saw progress, really miracles though quickly followed by the same questions from different medical professionals…what was our wishes and how aggressive we wanted treatment? I felt like a broken record as I also felt like a silent voice. I stalked the NICU by telephone when I was not there physically. Calling for results, calling for updates, calling just because and trying to keep everything together in our makeshift home of a hotel room. As minutes, turned into hours then into the days, we really were able to witness several miracles. Things that we specifically prayed and requested from others, our little one would come through on one but take three steps back on others. As I stood at his isolete side, I would read the comments left by others as to the daily updates I was posting while reading scripture from the bible, he was listening and God was right there with him. However, we quickly found out that as one or two things would be successful while one or two things would not. Finally it all came to a head as we had another heart to heart talk with another doctor, I asked questions where I was not even sure I knew where they came from. We all agreed to an EEG to determine if our little boy was still the little boy had seen several days earlier.
His head was so small, I was not even sure if they would be able to fit all the EEG leads, he received his crown as we call it. I had to excuse myself while the technician finished placing all the leads as their was a part of me that did not want to know anything along with the other part of me wanting it to start in that very moment. I returned about an hour into the test, seeing the screen, lines going across…I just cried. I cried uncontrollably as our family has had their share of EEG’s and I have seen many results, I am not a doctor not even close but I knew even with the little hicup here and there the lines I was witnessing was not in his favor. I knew in my heart our precious baby boy did not have any brain activity and it was not long where the medical professionals where confirming my worst fear.
I think when the doctor actually was speaking to me and giving the results,
a part of me, felt gone. I know there is a reason for everything, I say this always but the question of why bring precious baby Cane into the world only to take him out 8 days later? I was sad, mad and most of all I felt as if I was letting his first Mama down. A feeling I wish upon no one! I requested that any wires and tubes that could be removed from him, be gone so I could finally hold him close to my heart. For several hours I was able to love him more, sleep with him and just have those moments, those moments to cherish.
As first light of the morning approached, I left the hospital to get the rest of the family from the hotel. Not really knowing how we were going to get through the day where our little boy would
receive his Angel Wings. I knew as family we could do anything though it may be hard we would get through it together. Our little boy was given so much love without being in an isolete or encumbered in tubes and wires. He was held, snuggled and read too from a big crazy family that found light and love from him. I will not lie, I questioned our decision many times over and was reassured that our little boy was so sick that if he had stayed in utero another week or even a few days longer, the likelihood he would have been stillborn.
All that replayed over and over in my mind as to were we making the right decision? My answer soon came as the time to know our decision was correct.
As early evening came our little boy I had hoped he felt so much love where even if he did not know it; he have given so much love to our family. I can say that eight days is never enough to have with anyone while in comparison to a lifetime to others but I know that we will cherish every moment that we were given. As his passing came and the doctor gave the official declaration, our little guy has his tiny footprints forever stamped on my heart. I was asked this past week how I could love someone so much that I did not give birth too and my answer was how could you not? He needed us and we needed him and for that is the definition of FAMILY!
Our family is truly grateful and blessed by all the love, prayers, thoughts and out pour of support
through this time. I am still in awe by everything and I continue to read the comments and posts as it helps in our journey. Our precious Cane made his way into the world for eight precious days and brought light not only to our life but to many others. God had his plan. Though I still do not understand, I hope one day I will as I have faith our story is not over.
Until we meet again Little One....💙 God Bless!
For I am the LORD your God who takes hold of your right hand and says to you, Do not fear; I will help you...Isaiah 41:13
Our Crazy Big Family (minus a few) |
Until Next Time...Make It A Great Day!
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