Over and over in my mind I play out the entire story. I start at the beginning. I finish at the end. It starts with giving birth, and ends with me holding a little baby boy that has changed so much from the way I would like to remember him.
For those of you who don't know my story, I will share it with you...
I found out I was pregnant in the beginning of last year. Just like anybody else, I was excited and overwhelmed all at the same time. With the exception of having morning sickness for over half of my pregnancy, everything else was completely normal. I went into labor 5 days early, making the birth date 10-10-10! I chose to have my baby fully natural and had a wonderful labor and delivery experience.
The only setback to our beautiful story thus far, is that our Little Joshua swallowed meconium at birth. Because of this, he was taken to the nursery where he could be closely monitored. While there, he experienced apnea that was longer than usual for a newborn. Therefore, he was then taken to the NICU. We heard different things in the NICU, but the doctor ended up diagnosing him with having "Wet Lung", and released him after a few days.
Finally then, we got to bring our perfect little baby home, anxious and ready to start our new life. We had been home only about 6 short days, when I noticed Baby Joshua felt extremely hot early one morning as I got ready to feed him. Knowing that a fever was very dangerous for a newborn, immediately I called our doctor's office. They told us to take him to the ER as soon as possible. Stressed, but calm that everything would be okay, we took him straight back to St. Joe's, where we had just been the week prior. I was sure they would tell us that we were over-reacting, give him some baby Tylenol, and let us be on our way... God had other plans.
From then on, Joshua only got sicker and sicker. After spending 2 nights in the Pediatric Ward, we felt like our baby was not receiving the care he needed. At this point, we just knew that he had something serious...we could feel it deep down inside. We talked about transferring to Phoenix Children's Hospital, but the doctor assured us that it really wouldn't matter, since all of the specialists were the same. She then asked if we would like to move up to the PICU. We both happily agreed.
Within a few short hours of being transferred to the PICU, our little baby was put on a ventilator, also known as "life support". All that the doctors knew was that he had some type of pneumonia... but which kind, and how he got it, was beyond their imagination.
They started running test after test: daily x-rays, CT scans, MRIs, bronchoscopies, ultrasounds, and eventually even a biopsy of his lung, when nothing else seemed to give answers as to why he was only getting worse. One day the doctor even told us he believed our baby had cancer.
Finally, they thought they found it...the real cause to his severe pneumonia. They discovered candida yeast growing in his lungs, and began treatment immediately. At this time, we had already been there for 2 weeks, and doctors told us it would be at least 3 to 4 additional weeks before we could go home. We were willing to wait.
However, the anticipated recovery never came. It seemed as if the medicine wasn't working. This threw doctors for yet another loop. "Maybe there is something wrong with his immune system", doctors started telling us. They called in another specialist who did 4 more tests. One of which, was for an incredibly rare genetic disorder called Chronic Granulomatous Disease.
Four days later, the doctor told us the test had indeed come back positive for CGD. This was the underlining cause as to why he was not able to fight the yeast infection that had attacked his lungs. How or when he aspirated yeast? We will never know.
By this time, Joshua had become so critically ill that doctors told us his chance of survival was only around 5%. Doctors had upped the dosage of every possible medicine, and even added another breathing machine for more support. His entire body was shutting down, and we knew that at any moment his heart could stop. We had already sat down with doctors to discuss what we would do in case this actually happened.
The next morning, Salesi called to tell me that the nurse wanted both of us at the hospital ASAP. I paced my house back and forth, knowing deep down inside what lay ahead. "This is it, the time has come", I thought. It's very hard to express all of the emotions I then felt rush through my body. Even though I was scared, there seemed to be a sacred feeling surround me. I'm sure there were angels with me, just like there were angels with Joshua ready to escort him to his new home.
I had already made my mind up before we got to the hospital that it was time to let him go. I knew he had suffered enough, and wasn't going to get better. Salesi, on the other hand, had a much harder time with this decision and reality.
We chose to take turns holding him in the rocking chair, still with all of the equipment hooked up and turned on. Our sweet little boy had changed immensely from the little baby we brought into the hospital 3 weeks earlier. His entire body was puffy and very stiff, retaining all liquid. Even the back of his head was swelling rapidly. After a few hours of rocking and singing to our precious son I then took my turn of holding him one last time, as the nurses unplugged all of the equipment that was keeping him alive. He died just a few minutes later.
It's still very hard for me to look at the pictures we took of Joshua's last day on this Earth. I don't wish to remember my son like that. However, looking at those pictures sometimes helps me to understand just what God was thinking when he gave me this trial: I'm much braver than I thought I was. Never would I have ever imagined that I could hold my little baby in my arms and watch him die, but on that day, I was able to do just that.
Misconception of the ungrieving world: "Everyone wants to talk about their story." This isn't always true. Some people like to talk a lot about details in the beginning, shortly after their loved one has died. This is probably because they are still in a state of numbness. Even though it has now been more than 4 months since Joshua passed, I still have days when talking about his story or even his diagnosis is difficult. I will always try to fight back tears with anyone, other than my husband, who talks to me about Joshua. It also depends on the type of loss and cause of death. Some people might never wish to think about how it happened ever again, but only mention it by using the word, "accident". My best advice is to always be extremely sensitive to anyone who has ever lost a child. Really, this means for the rest of time, since grief is something that is always there, and will come and go like waves of the sea.