Tuesday, May 15, 2012

Catching up...

So I've pondered, how can I possibly share what we have been through the past 4 months? And it's going to have to be an abridged version, so while this seems like a long version I could probably write a multi chapter novel. So here we go...

Preston was born January 21,2012 on the same day that we completed our childbirth class. In fact my water broke probably a half hour after while going to have lunch with our friends that were also in the class with us, Leah and Casey. The day was the fastest day of my life. 4 hours later Preston had arrived. He was having trouble breathing so was flown to Mercy Redding he was there for nearly a week and boy, we thought that was tough! In retrospect those first 6 days were a cakewalk. On day six we got a call from the Doc and he asked us to come to the NICU ASAP. We knew something was up when he took us into his office. We've learned that when the docs take you to a private place you are in the "bad news room". He proceeded to tell us that they were concerned about preston for several reasons so they had completed several ultrasounds and a CT scan and had discovered that he had a bleed in his brain. Devastating news of course and Preston was then flown to UCDavis within hours. We drove down I-5 to Sac while our son was in the air and beat him to the hospital. I think we arrived around 1am. We were asked dozens of questions about our family history, the course of events thorough the pregnancy, birth and the events that took place during the first week of his life. He was closely monitored for weeks for the bleed in his head and several tests were done to find out why it had occurred . Apparently it's common for premature babies to have bleeding but not babies born at 35 weeks. A hematologist closely followed and studied Preston for bleeding disorders. It seemed like the took a pint of blood from him weekly for all of their tests. All tests were semi inconclusive and left the Docs scratching their heads as to why this occurred. We did learn from the neurologist and Neuro surgeons that the bleeding could possibly have some hindrance on Preston's motor skills on the right side of his body but they have reason to believe that he will be fine cognitively because of the location of the bleed. Preston did have a surgery to implant a catheter called an inter ventricular reservoir so that the fluid could be released to attempt to remove the blood fragments from his brain so that hopefully the spinal fluid could flow properly without a permanent shunt (drain). The reservoir is a little bump on the top of his head that can be poked with a syringe to remove the spinal fluid to release pressure. Most baby's have a flat soft spoof with a narrow opening. Because this bleeding occurred Preston's soft spot was wider than normal and at times slightly bulged. To this day he still doesn't have a shunt but that's not to say that at some point it will not be necessary. Finally, after about 6 weeks it seemed Preston's condition had stabilized enough for us to take him home. We were home and back a few times for planned re-admissions for monitoring of his little noggin and during each re-admission, if they found something in the ultrasounds that showed that his head was not stable they would take home into surgery that day to put in the vp shunt. It was so hard knowing that the ultrasound would determine if we would either go home the same day or else go to surgery immediately. He escaped the surgery through two of the re-admissions so we were able to take him home for two weekends and then the third time he was safe again we thought we were home for good. The plan was that we would then come back to see the neurosurgeon every two weeks for close monitoring.

Finally, home, so we thought.- we were home for 4 days when we noticed daily that Preston's abdomen was slowly growing in size. It was even a little distended before we were discharged from the hospital but it was attributed to the fact that they had fortified his diet with a higher calorie breast milk and formula diet to help him catch up in size. However in addition to his stomach puffing out he became really pale, lethargic and his eating dropped dramatically and then overnight he stopped peeing and pooping. That was the final straw. This kid always has a dirty diaper and we can expect to see a "prize" in nearly every diaper. So when there was nothing all evening and through the night we rushed him to the emergency room.

My sister just happened to be working in the ER that day and she shared with the docs that he was a hard stick for an IV and that they would never be able to get a line started. Previous attempts from when he was hospitalized he had several nurses attempt to get a line and sometimes it would take several nurses multiple hours. I always tried to give the nurses space and go in the waiting room but I also saw several nurses cry because they felt do bad for our little man after not being able to successfully start an IV after multiple pokes. We knew ultimately he would not be able to be treated locally and that he was headed back south to UCDavis. The doctor determined that Preston was stable and that it would be faster for us to drive him rather than fly him down so there we left. When we arrived they stuck us in the bunny room, which is the room that you are in just before going home. They thought they would be treating him for dehydration and maybe constipation but things escalated from there and at a scary rapid pace. Tests were done to determine that he was septic (blood infection) and that he was getting more and more puffy throughout his body. Additionally he was extremely anemic and required a blood transfusion immediately. Over the next week he was treated for the infection and his condition seemed to get worse for several days. At his worse he was so swollen all over his body that he looked like the Stay Puff Marshmallow man on Ghostbusters. The team of doctors was avidly trying to put together the pieces of the puzzle. One doctors said that it appeared that he had the symptoms of Nephrotic Syndrome. Preston went from being in the least critical section of the NICU to the most critical overnight. When we arrived and they said we were in the Lion room, my heart hurt so bad. For so many weeks I looked through the glass in the lion room as we passed by and knew that's where the sick babies were on that side of the NICU, and now there we were.

Eventually the docs narrowed down the symptoms and it was starting to for sure look like nephrotic syndrome. Now, is it congenital? Congenital nephrotic syndrome occurs from a genetic mutation and shows its ugly symptoms within the first 3 months of life. The body basically loses almost all of the protein in the urine and so the body becomes very deficient. The kidneys are responsible for so much in our bodies. So many of Preston's symptoms were now making sense. His blood pressure was always slightly high which could possibly be the cause of the bleeding in his brain, but that still has not been determined. The preterm birth is explained along with so many other items that occurred during the delivery and the first several weeks of his life.

Apparently nephrotic syndrome can be caused by many things such as an infection, which Preston coincidently had but with the symptoms not correcting it was appearing that his situation was not an incidental condition and that it was something probably more permanent. The doctors debated on doing a biopsy but between all of the doctors they couldn't come to an agreement on the appropriate method of biopsy google with a needle or an open incision). Finally, someone asked the surgeon after about a week of debate and he stated that a biopsy wouldn't be conducted until he was much larger and hopefully healthier so at this point being that he was still only about 6 lbs was to do a send away genetic blood test. We learned that the results take 6-8 weeks to come back and that there are only a number of labs in the entire country that have the ability to conduct the test. Regardless of the results his treatment was pretty much the same. After 10 weeks of waiting, the results did come back and there was in fact an issue with the gene that then points to congenital nephrotic syndrome.

After 12 weeks in the hospital and stabilizing his fluid shift, we were finally able to bring Preston home. It was exciting and terrifying all at the same time. It took at least a weeks worth of coordinating with pharmacies for the supplies for his continuing care, scheduling deliveries and getting our house ready. Finally on Friday the 13th, I ignored the fact that I'm somewhat superstitious, and I held my breath as we drive up I-5 with our kiddo in tow. Tyler joked the first time that we came home that he was going to drive with both hands on the wheel at 10 and 2 going 55mph with the emergency flashers on....after an additional 6 weeks in the hospital he said the same but suddenly it was 35 mph.

So glad to be home!


  1. What a tough road you've had to go down, Vici. Thank you for writing so eloquently about this condition, and I'm sure your blog will help other parents who are similarly stunned. You all have been in my prayers since I realized there was a medical issue, and that won't stop. All blessings and hope and love to your precious Preston, and strength and courage and patience to you and Tyler.

  2. I am a long time friend of Allene's which is how I found your blog. What a rough road you have been down! Prayers for healing for Preston and strength for you and Tyler as you travel this uncertain road that you have ahead of you. Enjoy your time with Preston every minute!