Wednesday, January 4, 2012

Happy (Early) Birthday Brayden

On January 4th, 2012, I presented to the OB clinic with decreased fetal movement at 31 weeks and 6 days into what had been a pretty perfect pregnancy. When they started checking us out, it was apparent that Brayden was in serious danger. As I moved as quickly as I could to L & D's triage area, I was in a daze. They began prepping me for a c-section, there must have been 5 nurses all touching me at the same time, trying to get my IV and trying to get Brayden on the monitor. When they found his heartbeat, everyone relaxed a little as his heart rate was where they liked it at 150. As anesthesia was consenting me and the doctor was talking about the need to deliver him in the next 24ish hours, his heart rate dropped again an they couldn't fix it. They took us to the OR and Brayden was born at 1450, weighing in at 4lbs and 2oz. When he was born, he was not breathing and had no heartbeat. He was also having a seizure because his blood sugar was 6. (For my fellow nurses out there his PH was also 6.4) They coded him for 7-8 minutes before a heartbeat was found. Breathing tube #1 was inserted as well as a central line for IV access. Thank goodness I was still under anesthesia for all that because I am sure those 8 minutes would have been unbearable waiting to see if they could resuscitate him or not.
He was transferred to the NICU in critical condition, on a ventilator and on IV pressors to help him maintain his blood pressure. The only thing I remember about being in recovery is that no one would tell me ANYTHING. It was the most frustrating thing on the planet, although I am sure they were trying to stabilize Brayden at that point.  Eventually, the neonatologist came to talk to us and my family were finally allowed in the NICU to see Brayden while I finished recovering. 
The next few days are a bit foggy. When I went to visit Brayden that evening, they were weaning down his pressors as well as his vent settings. He was still sedated with morphine for comfort. Over the next few days he seemed to be improving a lot. He was no longer on pressors and he was breathing over the ventilator. We were warned by the NICU staff about the honeymoon phase, which is when kids seem to be doing well but then have setbacks. I think they were warning us. Ultimately Brayden was doing great. He came off the ventilator with no trouble, they were going to start feeding him breast milk down his NG. We were told he had a small bleed in his head, but that it should resolve and not cause us any problems. After three very long days, I was finally allowed to hold him. I can't even express how great it felt.
Can you believe how small he is?
Holding Brayden was my new hobby! I drove the 40 minutes to KU everyday, sometimes even twice a day to hold baby boy. After all, how could I not want to hold him? Unfortunately he developed some jaundice, and was put under Bili lights to decrease his bilirubin.
It seemed like he spent weeks, although it was only days, under those lights with us being able to only hold him for 30 minutes a day. He finally started managing his bilirubin without the lights and we were off and running again! He was doing so well that we were moved downstairs to the less critical NICU. The less critical NICU was great. There was less alarms, and more privacy for all of us. Unfortunately, this is when things began to deteriorate.
The nurses were taking daily head measurements because he had that earlier brain bleed. One morning, his head had grown an alarming rate overnight, and a stat MRI of his head was ordered. The results showed that he had hydrocephalus "water on the brain". Basically, the bleed was blocking the reabsorption of his spinal fluid and he was accumulating fluid rapidly.  He had a spinal tap, and a neurosurgery consult. It was determined by neuro that he was stable at that time, and he did not weigh enough to warrant intervening at this time (Our neurosurgeon felt that 5lbs was the magic number. Little did I know we were incredibly lucky he felt that way or Brayden would have ended up with a VP shunt he didn't need..... So began the "wait and see," and to do intermittent spinal taps to check his fluid and pressures. He kept just not acting like himself, and he wasn't crying anymore, even for the spinal taps. He was having more desats and apnea spells as well. The nurses thought it was his head, but neuro didn't think so. After some labs were completed, it was determined that he had an infection in his bloodstream called sepsis. We were immediately moved back upstairs to the critical care NICU and antibiotics were initiated. Our neonatologist warned us that Brayden could possible require respiratiry support if he continued to deteriorate. Thankfully he didn't and the antibiotics did their job.
As we kept watching his head, it seemed that he was improving again and began to drink his bottles in their entirety! That was a huge thing for Brayden and his suck and swallow reflex was affected at birth. He was even giving the nurses trouble and kept pulling out his feeding tubes
Then his head started growing again, and on February 7th, he had brain surgery to placed a device to allow fluid to be drawn off his brain without having to stick needles into his spine. So, breathing tube #2 was placed, and he came through the surgery amazingly well.   They took his breathing tube out that evening, and he was back to drinking bottles.
Prior to his surgery, there was some discrepancy about whether he needed a VP shunt or not, and we chose to go against neuros recommendation and only have the reservoir placed. I was willing to risk the need for another surgery later to avoid an unnecessary shunt placement. I mean, how many revisions would he require in his lifetime? I needed to be sure he truly needed it before I chose that path for him.

After a total of  eight weeks in the NICU, we were finally able to take Brayden home on February 27th. Of course we had to promise to bring him back to have fluid drawn off twice a week and follow up with neurosurgery, but I didn't even care. I had been walking by his empty nursery for 54 nights on my way to bed and I just wanted him home. Between my family and myself, and I am confident that we paid KU parking more money than I want to know, and I am sure we drove thousands of miles between our homes and KU. We were all grateful to put this experience behind us, although I am sure we will never forget.

Of course we had to get his pictures taken after coming home. He was adorable and slept through the majority! 

We were grateful to have the opportunity to bring Brayden home as we saw several families in the NICU with babies less sick than Brayden who were not that lucky. We take things day by day and hope for the best.............


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