Kyle's Room - The place to come for all the news that's fit to print. Which is pretty much everything when you're only a couple days/weeks/months old.

Sunday, June 11, 2006

4 Weeks and counting...


Well, Grandma and Grandpa T left this week. They had a great visit with Kyle and we got lots of great pictures. It was a bummer to see them go but we had lots of fun while they were here. We didn't do the standard 7 days of sightseeing this trip, everyone was very happy with just hanging out, drinking some ESB/Mirror Pond Pale Ale/Scuttlebutt Amber/Full Sail Pale Ale/Thomas Kemper Soda and watching Kyle do baby stuff - eat, sleep, diaper changes.

We did have one day of visiting some very scenic parks in Seattle and also Kyle's first trips out to eat, one to a nice littel fish shop in Mukilteo and one to a mexican restaurant. He did very well, he even held off on ordering any blackberry margaritas. Grandma S will be coming out in only a week, which will be good times too.


We had another great weekend. We did some cleaning, yard work and the usual other stuff. Dad even got a mountain bike ride in today on a beautiful Sunday. We also had two different visits with friends. We're trying to get as much parenting information as possible from them so that we won't learn too many things the hard way. There probably isn't any other way than the hard way though is there?

Today was Kyle's 4th week out on his own and we celebrated with a quick nap on Friday night and then an impromptu trip to the emergency room to consult with a neurologist regarding some test work he had last week. So we stopped for some burgers and gas at Herfys (burgers and shakes for Mom and Dad, gas for the car) and we were off to Children's Hospital in Seattle. It was Mom and Kyle's 3rd doctors office of the day but this was a pretty harmless trip (besides the 15 minutes of screaming and howling to draw blood for testing). We found that we'd have to increase his anti-seizure medicine to ensure that his blood levels stay in good range. As we left the ER at about 9:30 PM we saw many families that are much worse than us, and we realized even more that many families have it pretty bad. So where did this all start? At the beginning.

We woke up on Sunday May 14, Mother's Day, and Mom didn't feel so good. It didn't appear to be labor related at first, but soon the contractions were starting. We started recording the duration and intervals, they were quite irregular but very intense. We called the labor triage at about 9:15 am and they advised us to come up to the hospital to check things out. We gathered our stuff and headed to the hospital, about 8 miles away. It was a gorgeous day as we drove to the hospital, one of the best days outside that we might have had all year. We checked into the triage unit at about 10 am, looked like a slow morning, no other moms and dads waiting around. I headed down to move the car, looked we had some time. Soon after I returned to the 3rd floor we were admitted to the unit, about 10:15. It didn't look like there were any other patients in the ward. The nurses were chit chatting, a pretty easy going place apparantly. The attending nurse did the medical history on Mom and then hooked up the infant heart monitor and contract-o-meter, about 10:25. This is when things started happening fast.

As the first monitored contraction started the nurse commented how intense the contraction appeared. Mom was relieved to hear that she was indeed having contractions, but I noticed the heart rate slowing down. We had been instructed in our labor classes that this is what was supposed to happen, it was just a bit strange that the deceleration kept decelerating. The nurse quickly moved Mom to each side and started moving the heart monitor around - these were obviously bad signs. The ward which had been pretty relaxing up to this point, quickly sprang into chaos. The nurse hollered something out of the curtain and soon a gaggle of nurses and doctors were on the scene. They flipped Mom back on the bed and I started clearing chairs out of the little exam area to make way for all the staff that had suddenly appeared. After some rigourous examination and after a short conversation, the doctor decided that it was time to get the baby out, no messing around. We were quickly moving out of the traige unit and down the hall to the operating room. A nurse grabbed me and told me to wait in one of the birthing suites across the hall from the staff entrance to the O.R. She told me to sit tight, if they could scrub me in they would if the baby's heart rate stabilized and leveled out. Mom went into the OR at 10:35 am, she still didn't have an IV started (great veins that now run in the family). Mom and I really didn't say any good-byes or good-lucks, we just had one last "What the heck is going on here? Oh well" look at each other as she wheeled down the hall.

As a I sat/paced/stood in the "waiting room" a steady stream of medical staff were heading into the OR. So many people were headed in that I thought that it must be a lounge of some sort. The clock slowly ticked off and it became clear that they were getting down to business. Not the most fun I'd ever had, I pretty much assumed that any minue someone would pop in and say " OK, false alarm, everything is going great". Not exactly. After a pretty long time, I think it might have been around 11:10 or 11:15 am the same nurse that dropped me off came into the room, in scrubs, and said something to the effect of "You have a baby boy, we had to resuscitate him. When we bring him out, you'll head down to the NICU with him." That was about it, and then she was back off to the OR. Oh, OK. A few minutes later, the incubator box came rolling down the hall, I got in the parade with the nurse practitioner and several nurses and headed to the elevator to head down a floor.

As we entered the elevator to head down to the NICU it actually looked like there was a baby inside the incubator! Seemed a bit surreal. We hit the second floor and one of the nurses asked if the baby had a name yet. Luckily we had a little boy so I could say with some confidence, that his name was Kyle. It didn't come out very loud, I was in a bit of shock at the time.

We rolled into room 207 which would be our home away from home for the next 9 days - although room 321 got to be pretty familar too. The flurry of activity didn't let down from there. There was little crying from Kyle, he was too busy huffing and puffing. This was a natural response to try an exhale excess CO2 - he was suffering from metabolic acidosis. His blood pH was a 6.9 verses a normal target of 7.4. The attending nurse practicioner made it pretty clear that this was not a good thing. This was one of many lab tests that would be streaming in for the next few days. She also passed on a bit more detail around the circumstances of the delivery. It appeared that there had been an infection in the placenta - it wasn't clear when or how this had happened. Kyle had also released meconium at some point well before labor as they had to aspirate him below his vocal chords. It was pretty clear that he hadn't been, and still wasn't in good shape.

The first few hours were very focused on blood gases and then this transitioned to all sorts of tests as he started to get himself back on track. The time seemed to fly by and at some point I asked if it was OK to go back up to see Mom. Room 207 was pretty full with doctors, nurse practioners and nurses - they had things as under control as could be, not to mention that I wasn't contributing much to the effort. I headed back up to the 3rd floor to see what was going on.

I slipped into Mom's room to see how she was doing. She was still pretty much out of it at this point but there were already doctors and nurses working on her. Little did we know, Mom had at some point developed a form of preeclampsia called HELLP syndrome. This syndrome basically involves an enlarged liver, a break down of red blood cells and a low platelet count (read more at the attached link). This syndrome occurs in about .2 to .6 of all pregnancies and can be fatal in about 1% of patients that have it. So it was pretty clear that Mom had something pretty serious going on but the HELLP diagnosis was still a day away - short term it was a steady dose of the Magnesium Sulfate to prevent any seizures and a regular regimen of blood sampling.

Mom was still pretty groggy from the c-section so I headed back down to check on baby Kyle. His situation ws still pretty tenuous. He was now in an oxygen hood to ensure that he was maintaining good blood oxygen levels. I went back up to check on Mom (see a pattern forming here?) and after a few hours Mom was feeling good enough that we decided on a trip down so she could visit Kyle for the first time. It was quite a commotion - Mom had to stay in bed with her rack of IV medicines. It took me and 2 nurses to get her downstairs and squeeze into Kyle's room. It was well worth the effort though so that we could all be together for the first time. I was feeling a bit left out as I was the only one who wasn't medicated at the time, but that was easy to get over. It was pretty rough not being able to pick him up with all of his leads and IVs

and oxygen, but it was all for the best. We were able to hang out for good bit, but soon Mom started getting pretty tired so it was time to head back up. We assembled the troops and maneuvered back to room 321. Mom took a nap to recharge and we actually made another trip down later that night - this time with Mom in a wheelchair. By this time Kyle had been turned face down to help him with his breathing. he was still huffing and puffing like he was running a tough race - a sign of how far off his blood gases still were. This wasn't the best trip, Mom doesn't even really remember it today. She was too tired to really get much out of the trip but it was just a few more minutes with our little guy as a family. We tried to get some sleep after we got back up to Mom's room. I remember wondering what the next day was going to hold.
May 15, 2006
After a long night of not much sleep and too many blood tests it was back down to check on Kyle. My first thoughts in the morning were that today will probably be worse than yesterday. I soon found out that I wasn't wrong. Kyle didn't have the best night. I found out that he had started having seizures at some point and had been put on phenobarbital - an anticonvulsive which he is still on as of this writing. Things were about to get exciting, again. The nurse practioner was attempting to get a line started in his foot, but he was so agitated that was kicking, fussing and crying and was basically un-controllable. The nurse gave him a sedative to calm him down, and this allowed them to get a line running for his antibiotics, phenyl-barb and a dextrose solution to help get his blood sugars normal. The treatment with the anti-convulsive may have to last for an unknown length of time. The doctors had consulted with a metabolic specialist to try and help get his blood lined out, it was still acidic but getting closer to normal. By this time Kyle was out from under the hood and had a prong in his nose for oxygen supply. He was hooked up to monitoring for heart rate and blood oxygen saturation. He also had a bundle of tubes - one for the dextrose solution and then antibiotics and dosing of the anti-convulsive. He was almost all tubes, which led to only the occasional opportunity to hold him. A sample was taken from his spine (LP-lumbar puncture) to check for any deep infection - which would be very bad. The nurse practioner then also worked on placing a central catheter. This larger diamter catheter was required to ensure that while Kyle was being administered medicine and more concentrated nutrients his smaller veins wouldn't burn out. They were not able to get this line in though - not sure what the problem was. His blood gases were to normal levels by 4:15PM. Kyle hasn't been allowed to eat anything yet, his stomach/bowels aren't doing anything. All of his nutrients would be coming out of a custom conconction in a bag that was dripped right into him from his central line.

Mom isn't doing so well yet. She has been on magnesium sulfate for a day and hasn't anything to eat either. Her kidney function is very limited and the numerous blood tests really weren't showing anything positive. The mag-sulfate causes her to have very slurred speech, forgetfullness and hallucinations - not a great combination. Her doctor had called in the lead high-risk pregancy physician on Sunday for a consult and this doctor was back today. They had a long visit with Mom, talked in the room for quite a while and then had a long pow-wow outside the room. They still weren't positive what was going on, but they were thinking that she did have HELLP syndrome. They were very concerned though that she needed some more intense observation. Stay tuned.

I went down for the 10 o'clock rounds, I told Mom jokingly "Don't go anywhere till I get back". As if she could go anywhere.

I sat in Kyle's room until it was our turn for rounds. His nurse came and got me for the discussion, I sat in a nice glider rocker right at the nursing station. I'll have to admit it was a pretty grim scene -lot's of numbers that I really wasn't understanding (go figure). I was trying to formulate a coherent question when one of the nurses gave me a cordless phone. What is this for? It was Mom's nurse from upstairs. The ambulance was on the way to transfer Mom to a different hospital. Talk about information overload!!! I just said, OK, I'll be up after rounds. I didn't take very good notes in rounds and I never figured out a good question. It sounded like some things were better others weren't changing. Importantly, they were scheduling a MRI for the afternoon and an EKG - brain activity testing. Testing that has to be done, but I really wasn't sure what we were going to do with the information - this wasn't a very fun morning.

Well, off to the Providence Hospital - Colby Campus CCU (critical care unit). The weather was just great today, much like Sunday. The grass was green, sunny, warm. The seals were barking below the Women's and Children's Center at the Providence-Pacific hospital. It was a short drive to Mom's new hospital, maybe 1 mile or so.

May 16 2006

Down in the NICU at 7:30am for my first official update. Not such a great night. The staff had a done a LP but not the PIC line - thought is to try again today. It's pretty clear at this point that Kyle has Mom's veins! His blood sugar is now regulating well - this is good! They added a new hose to Kyle over night, a line was added to the knot in his navel to monitor his blood pressure and to pull blood samples. This is a pretty cool contraptions - a tube of saline solution and a line lock. When they want a sample, the nurse just opens the valve, pulls back on the syringe and take the sample. When they are done, just push the syringe closed and the blood goes right back in his body - crazy. He is currently breathing on his own, just straight room air. He has had a TPN bag running since last night for better nutrition than just the dextrose solution. He had been off of his IV for about an hour as he had pulled the line out of his hand. They moved the line to his right foot - starting to run out of spots to stick. Kyle is a tough guy, the nurse apologized before sticking him in the foot with a big needle, he didn't even flinch. They've been trying to measure urine output, trying to get a read on kidney function.


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