Newborn Faces Fight for his Life

newborn baby facing kidney issues….continued from Natural Childbirth…..My mind was still reeling and my body trembling from the intense labor I just gone through, delivering my beautiful baby boy into the world at 9:52pm.  I was heart broken to think that he was facing any health issues, though I had seen (and felt, during labor) his severe swollen abdomen.  I had no idea what could cause his belly to be so distended, but tried to remain positive that it would be minor, as the whisked him away to the NICU (Neonatal Instensive Care Unit).  Very concerned, my husband and my mother quickly followed.  

 When my husband returned several minutes later (how many minutes had passed, I am not sure as I had lost any grip on time passing at this point), he was visibly shaken, ashen with beads of sweat on his face.  Seeing him immediately compounded my own worries about what we could be facing.  He began rambling all the possibilities that the doctor has mentioned to him…all of them sounding very serious.  There had been no formal tests or scans at this point, to actually determine what was causing the severe distention of his abdomen, though I learned there was an ultrasound scheduled.

It must have been about an hour after he was born, that I was cleaned up and my trembling had stopped enough for me to be able to walk to the NICU and see him.  I walked into the unit and saw him under the little warmer with the monitors and IV attached to him, swollen belly moving rhythmically up and down with his breaths…He was calm and seemed to recognize my voice as I spoke to him.  He seemed wiped of his energy, as he opened his eyes searching for me.  I held his little hand, taking him in….and silently pleading and praying that he would be okay.
Later that night, I learned that our newborn son may be facing a condition known as “posterior rethral valve” where the rethral valve is reversed, not allowing urine to be released from the bladder.  Fluid backing up, unable to be released, would explain the severe distention in his belly.  It sounded like a fairly simple surgical procedure could correct this and we were informed he would be transferred to a different hospital the following day – one more equipped to deal with his condition….a hospital with an advanced NICU and amazing doctors.  The remainder of the night/ morning was a blur as I miserably failed at any sleep.  Worries kept my mind alert, while the unnatural process of not having my newborn curled up to me, or anywhere near me, kept my body on edge and my heart heavy.
 newborn baby in NICU
The following day included many walks over to the NICU to spend time with my son while we waited for the Neonatal transport team to arrive.  Finally by later afternoon, the medical team complete with neonatal nurses, were snugging him up in a transportation incubator.  We followed to meet up with him at the next hospital.  The NICU at this hospital was a lot more technical in looks and practice, with computer screens and machines lining the walls, monitors beeping, and busy attentive nurses walking every which way.  We were immediately informed of the policies and procedures which included a full three minute scrub to the elbows upon entering the unit.  The unit itself must have housed a couple dozen infants, most of them premature babies in fully enclosed and covered incubators.  We arrived a little too late that evening to actually meet any of the doctors.
The gravity of our son’s situation did not really set in immediately, as we learned about the posterior rethral valve being confirmed, and surgery scheduled.  Meanwhile, a catheter was placed to drain the huge amounts of fluid that had put his body under so much stress.  The ultrasound scan showed a huge amount of fluid backed into his tiny bladder, his kidneys, and his abdominal space.  The urologist explained that the kidneys had dialated with all the excessive fluid, and one of them had essentially torn or blown out.  He explained that after we drain all of the fluid out of his bladder, then we will have a much better idea of how his kidneys will be able to function.  I think the first time I recognized the seriousness of his situation was during this conversation when the surgeon mentioned his kidney function numbers which essentially indicated our son was born in renal (kidney) failure.  First, he said it wasn’t fair to look at his first lab draw after birth because those number reflected my numbers….and I had basically been his dialysis unit for his kidneys, while he was in utero.  That last fragment it was got my heart pumping….his dialysis unit.  It did not sound good.  We learned about kidney function numbers, and that his were high and out of range, but that his kidneys were under alot of stress and fluid at that time also….so we have to do the surgery, drain the fluid, then wait and see…..
The surgery itself was fairly simple, and the greatest risk to him was probably the anesthesia.  As standard practice, he was placed on a ventilator for the surgery.  After surgery, he came off the ventilator fairly quickly, within 24 hours.  Being only 2 days old, it showed his strength and we knew we had a little fighter on our hands.  He still had a catheter in place, and they were prepared to remove it fairly quickly, because his ability to urinate would be the result a successful surgery.  When the doctor checked in on him the day following surgery, he removed the catheter.  We were excited to see that he was urinating though there was a little concern over the amount.  Technically it was within normal range, but for the amount of fluid he really had to get rid of, it was light.   We remained hopeful that all was okay, though we were concerned that his belly distention was not dramatically decreasing….we were assured that that may just take some time.  The following morning, our arrival was met with more problems as we learned they had to put a new catheter in place.  His belly had distended even further as a large amount of IV fluids were given to him, and something was still preventing him from successfully releasing it.   The doctor believed that his bladder was very tired after being so stretched beyond normalcy…and it needed to rehab in order to work properly.  He figured we could leave the catheter in place for about a week then give it another trial after the rest period.  
 baby boy in NICU
A day or two later, we got our first visit from the kidney doctor. Listening to her drained me, as tears literally streamed down my face. She was showing us the scan of his kidneys, and pointing out how abnormal they looked. She went on to say she was pretty uncertain about his future with regards to his kidneys….perhaps they would carry him through, or perhaps they may not. The one kidney that took the biggest blow, having ruptured under the stress and pressure, resembled swiss cheese as all the dialated areas appeared as holes. The doctor said we would watch his kidney function closely but she did not appear very optimistic which was really discouraging to me. 
On the way home that night, I told my husband that we need to pray very hard, and we need to envision a positive outcome…vividly….and believe it and give thanks for it.   I said we need to picture the doctor looking at some future scan of his kidneys and saying something like, “wow I am just baffled….this is remarkable….”. We needed to picture and pray for a miraculous healing.   We need to picture his numbers completely normal….we need to envision, pray, and give thanks….
When we got home, I wasted no time in contacting friends and family, soliciting prayers for our little man. I posted on facebook, on our video, and he was added to prayer lists at several churches. It was very encouraging to me, that so many people were putting out prayers for him.   I know prayers are powerful because I have seen them at work in my life before….and prayer in numbers is even better.
Over the next few days, we watched his kidney function numbers slowly fall back to normal range, and we were ecstatic. I felt blessed and hopeful, and so very thankful…. felt like the prayers and positive thoughts were all working
The rest of the week slowly went by, as my husband and I made the drive every morning and every night.  At home, we tried to be energetic and positive for all of our other 5 children, who were feeling our absence and the stress of the situation….and all of them missing out on this time with their newest younger brother.
 mom and dad holding baby in NICU
After a long week, the day had finally arrived to pull his catheter again, as we kept our fingers crossed. They did so around 10am. Unfortunately by about noon or 1pm, they had to put it back in again because he bladder began immediately swelling, filling with fluid. The next suggestion was hard to hear, but we were willing to take on whatever we needed to help our son heal and get him home with his family.   The doctor suggested we do a vesocostomy, where a small hole is surgically put into the bladder, to help it drain outside the body.   It is a more permanent solution to the catheter and would allow us to take him home, while his bladder rested and rehabilitated over the next 6-12 months. At that point, they would simply close it up again, after his bladder rehabilitated.  We asked if there was any chance the first valve surgery didn’t work. The doctor said it was possible, but it’s so rare. He agreed to check with a dye test the following day, and reported that he thought it looked okay….we were bummed because it would have been so much less invasive to just re-do the valve surgery….So, the surgery was scheduled for the following morning to place the small hole in his bladder. 
The following morning, the doctor said he was up late thinking about our son, and wanted to do another quick procedure first, just to make sure there was no residual valve left in place.   They disappeared into the OR again….Forty minutes later, I was thrilled to hear the doctor come out and report there WAS residual valve left in place, and they simply cut the valve again….NO hole was place in his bladder.   I felt like another prayer was answered.
Prayers continued, stronger and stronger…we were on a roll….this time, we’re praying for pee!! We wanted him to be able to relieve his bladder fully….and to our amazement this time, success!! They removed the catheter and he was urinating well, without any backup.   At this point, it was just a matter of making sure he was eating okay…monitoring his fluid intake since he was just taken off the IV fluids finally. So, within a few of days of that last surgery, we took him home! He’s been home for almost four weeks, eating and growing…and peeing!   Last week, I took him in for another ultrasound and follow ups with his doctors, and guess what? The doctor said his kidneys look so good, he was “honestly just befuddled….”.   Another prayer answered. Okay, so it’s not “baffled”, but I will take befuddled!!   He said the scan looked so good, that he had to double check the name on the chart again, just to make sure it was the right kid….that is how remarkable the difference is.  
This experience is another true testament in my life of the power of prayer, and that miracles do occur all the time – small and grand.   Once again, my gratitude and appreciation for life has grown ten-fold as we love up all of our children, including our grand miracle, baby Jackson. 
 newborn fight for his life



3 Responses to “Newborn Faces Fight for his Life”

  1. on 10 Aug 2011 at 2:01 pm Teresa

    Hey guys,

    I saw your birth video and the following about Jackson on youtube.
    Due to the fact I will give birth to my firts child in a few weeks, I was interested in how others made that special life experience. My deepest respect to you, the parents. Seeing you going trough this and to see that it miracly can end up in a good way made me belive in the power of life in a new way. Thanks a lot!

    All the best for the future!


  2. on 10 Aug 2011 at 2:09 pm Jennifer

    I am so glad his and our story can be uplifting and inspiring for other…thanks for your comment. I wish you, your babe and family all the best!
    ~ Jennifer

  3. [...] born with severe kidney and bladder injuries (which I wrote about shortly thereafter on my blog: Newborn Faces Fight for His Life. One potential affect of this injury would be that it could be a bit more difficult for him to [...]

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