Ok, so here is Jacobs’ story … There are many views, there’s my emotional new mom view, there’s our view of the time as a family and then there is the view on the medical implications that resulted in our extended stay…. I am already lost and anxious to begin writing, as re-living any part of this time in our lives, is like willingly re-living your worst nightmare. This period of time does not define our son, myself nor our relationships, it’s the worst of the worst for us.
In between there are these magical moments, incredible friends and health care providers and of course at the center is Jacob, our little miracle, the medical exception to every rule, the tiniest scrap of humanity that ever LIVED!
Jacob Evan Martens was born via emergency C section at the Royal Alexandra Hospital in Edmonton, Alberta at 8:35pm weighing in at 710 grams and arriving on the 5th day of his 24th week of gestation. He needed to be resuscitated after letting out a little holler at the nurses and doctors in the room neither myself, (I was unconscious) nor his father were present at his birth.
His Apgar scores were 3, 5, and 7. The talented hands of a transport nurse named Liz and an Respiratory Therapist named Darren and an Neonatal fellow, Amber performed CPR on him while they struggled to intubate his tiny body. They were successful after 45 min and his father was allowed to see him and touch his hand. Jim named him Jacob Evan after his forefathers and his late aunt.
In his first 12 days of life Jacob fought through: pulmonary hypertension, a pulmonary hemorrhage, high blood sugar, PDA complications, and intra-ventricular hemorrhage resulting in hydrocephalus, a bowel perforation, he required several different medications, several blood products, re- intubation, gut surgery, brain surgery and a transport to a different hospital to receive said surgeries. In the midst of that first week the things that stand out to me his Mama are: I loved to hold his little hand! His blood pressure issues were only ever present when I was out of his room, breast pumps are evil things designed to make the most dedicated mothers feel inadequate! And what joy I felt when he self-extubated and we were allowed to try sin-to-skin care. I held him on day 5,6,8 and 10 then Jim held him on day 7 and 9, then things went wrong. We didn’t hold Jacob again till he was over a month old.
In the following months after the first two weeks we struggled to effectively advocate for Jacob as we had little information to base our choices on. We only had the love in our hearts and the doom and gloom from the majority of the doctors. (only one nurse was hopeful for him … like us) after 4 end of care talks in 6 weeks Jim and I placed a DNR (do not resuscitate) on our son. IF his heart stopped, we didn’t want to attempt to bring him back, what a horrible feeling that was; it felt like we gave up on him. Once Jacob reached the weight requirement for brain surgery, to place a shunt, we lifted the DNR and, told the unit to stop sending the Palliative care team to our bedside and started stretching our legs as pro-active, informed and fierce parents! We requested and were successful in setting up a family-centered care team within the NICU’s and had a primary physician that we worked with. From here on out we did better as a family there was a turning point that we didn’t see ourselves take until we looked back on that summer, it was in late August when we took what we were given and cherished it instead of being overwhelmed and numb and scared. So what if he can’t hear, see, move swallow, whatever! We felt like a family. We were showing it to the whole world and smiling despite the treacherous road ahead, bring it on!! We are together, we love each other and Jacob can feel that and we will take that and run with it!!
Throughout the fall months Jacob’s struggle was intense. We made through several brain surgeries and a g-tube insertion that finally worked to protect him from further aspiration which was a huge problem. We found a pediatrician and at 5 months and 3.5 weeks we transferred out of the NICU into a Pediatric Intermediate Care Environment. I cannot tell you that was the end of our hospital stay, Jake was 11.5 months old before we brought him home for the first time.
To date Jacob has endured 22.5 months of hospital life, over 30 invasive surgeries, 18 of which were in his brain, and dozens of other procedures all with a smile and infectious giggle that he’s imprinted on almost every healthcare professional he has met. He is 4 years old and has 24 different diagnosis, several of which are life threatening.
He is what some call terminally ill, I think he is just terminally cute!