Jaylie - 10 months 2 weeks -- ER Visit -- Day 2

I was able to stay with Jaylie last night. From about 12am until 4:30am Jaylie slept soundly. At about 4:30am Jaylie woke up with a grunt which is usually a sign of an event. I sleep right next to the bed Jaylie is sleeping in. By the time I got up and over to Jaylie she was fine, wide awake, smiling and playing. The nurse came in and I advised the nurse I think Jaylie just had an event but was not sure. The nurse advised if an event were to happen again to push the nurse call button right away and advise them of what is going on. The nurse did some routine stuff with Jaylie and then Jaylie and I laid back down to try and get some sleep. At about 5:30AM Jaylie had another event, this one was pronounced and was continued by a couple other events. I pushed the nurse call button and called the nurse in. Jaylie then did one last event the nurse was able to witness. The nurse then called the Dr in to take a quick look at Jaylie. The Dr asked the nurse and I what happened exactly and both the nurse and I were able to describe the event to the Dr. The Dr advised Jaylie looked fine at the moment and that the EEG scheduled later on in the day would hopefully give us more information.

So at about 10am this morning, the EEG guy came in and performed a 1 1/2 hr EEG during which he watched and recorded Jaylie’s brain activity. Jaylie pretty much slept through the EEG because the whole ordeal of putting the like MILLION little connectors on Jaylie’s head was a seriously traumatic event for Jaylie. Jaylie was wiped out by the time the EEG guy was done attaching all the wires. Due to Jaylie being wipeout during the EEG test, they did not catch Jaylie during an event but were able to gather enough data for the neurologist to order a second 24 hr EEG. After the EEG was complete, the results were sent off to the neurologist. The neurologist advised after looking at Jaylie's EEG results, she believed Jaylie is suffering from Infantile Spasms ( a form of seizure ). The neurologist ordered a second 24 hr EEG of which we are currently participating in. The neurologist hopes to catch an event which monitoring Jaylie during the 24 hour EEG.

The neurologist advised if it is infantile spasms we would need to start medication right away. This medication should stop the spasms (aka seizures) completely for a period of time but based upon Jaylie's medical history the neurologist advised Jaylie may have to deal with seizures later on in life.

Right now we are handing out up at Swedish doing a 24hr EEG.

The research out on Infantile Spasms syndrome is very disheartening. You can read about it here: Infantile Spasms

Thank you for all you're prayer and support, we really appreciate it!

Nathan, Kristina and Jaylie!

Here are some pictures from today: September Pictures

Jaylie - 10 months 2weeks -- ER Visit -- UPDATE: 11:57 PM

Jaylie had something similar to a seizure @ around 545PM today where she stopped breathing for a few seconds and started to turn a blue. Kristina and I immediately went into crisis mode. I told Kristina to call 911 because Jaylie wasn't breathing while I worked with Jaylie to get her breathing again. The only thing I could remember from our infant CPR class was to check to see if Jaylie was breathing and if she was to lay her on her stomach slightly declined and pat on her back, of which I did, periodically checking to see if she was breathing or not. Jaylie was slightly breathing every second or two, so I continued to keep her at a decline and pat her back until she coughed a bit and started breathing again. By this time Kristina had gotten a hold of 911 and had them dispatch a medic to our house. Before the medic could arrive Kristina was able to flag down our neighbor whom is a certified NR whom rushed in and took over while we were waiting for the medics to arrive. Once the medics arrived Jaylie was breathing normally and her color was back to normal but was acting a bit lethargic. The medics advised Jaylie needed to be take to the hospital right away and asked which hospital we wanted her taken to, either Valley Medical center (closest to our house) or Swedish Medical center ( the hospital that has treated Jaylie all along). We decided Swedish would be the best choice in this circumstance due to Swedish having all of her medical history. The medics were local firefighter medics and could not transport us to Swedish due to the distance and advised they would have to call a private transportation company to transport us if so choose to. They advise we would have to wait for the transportation company to arrive if we so chose to. Since the medics advised Jaylie was stable enough to be transported without any assistance, I advised them we (Kristina and I) would not wait for the private transportation company to arrive and would transport Jaylie to Swedish right now. Kristina and I immediately jumped in the car and drove up to Swedish. Upon arrival, Swedish took us in right away and started to take tests, vital signs and rule out possible causes for the seizure.

As it sits right now, the Dr's have advised early child seizures are common and are only medically treated if they last longer than 5 minutes. The Dr's advised seizures less than 15 mins usually do not cause damage to children at this age.

Right now we are sitting at the hospital waiting for the final conclusion, but have been advised at this point it looks like they are going to send us back home because Jaylie is 'ok' and have scheduled follow-up tests with the neurologist this week to do additional EKG scans to look at Jaylie brain activity.

UPDATE: 9:38PM -- Looks like we are going to be admitted now. Jaylie exhibited the seizure activity while the Dr was present and so they are going to admit us over night at least.

UPDATE: 11:57 PM -- So we have been admitted just for observation. Jaylie will be seen by a cardiologist, neurologist, lung Dr and gastro intestinal Dr tomorrow. The Dr's have said they are not sure these episodes are technically seizures and could be what they call ALTE's (Appearance of a Life Threatening Event), or due to complications with the reflux Jaylie has been having. So what does this all mean, what is means is that there are no major issues they see with Jaylie at this very moment -- there are events that have happened which warrant hospitalization for monitoring and testing, but nothing conclusive pointing at a major condition nor illness, which is a good thing.

Please keep up in your prayers.

Nathan, Kristina & Jaylie

Jaylie - 9 months

Jaylie is now 9 months old now! Wow! Kristina and I took Jaylie to her 9 month checkup a week ago and all is well. At that time Jaylie was just getting over a bug that made her poo a lot but is doing a lot better now. One of the surprised we found while Jaylie was sick is she LOVED to drink Pedialyte from a bottle! The first full bottle Jaylie drank was a bottle of Pedialyte while she was sick! Since then (about a week now) Jayile has been doing a lot better with oral feeding praise God!

Jaylie is just under 13 lbs now and over 24 inches long. She is barely on the growth charts but her growth curve is really good.

After Jaylie got better, a long with eating more orally she has decided to yell and make baby noises, hi-pitch baby noises, yay...

On a side note, Kristina got some comments from strangers asking how old 'he' is and so she decided she wanted to put headbands on Jaylie. Kristina started looking around for headbands but could not find any for a reasonable price and so looked to start making them herself. With the support of family, Kristina and family have made a bunch of headbands and have started selling them. Most of the pictures you see now of Jaylie she'll have a new stylish headband on in. Jaylie looks to be loving wearing them. If you are interested in a headband send us a message.



Prayer requests: Jaylie's growth and development. Clarity, favor and direction for Kristina and I's career paths over the next couple of months. Kristina is slated to go back to full time work around the October time frame but would like to continue to work part time. In order for Kristina to continue to work part time we need to make enough money to cover the month expenses with her NOT working full time. God has enabled us to have Kristina work part time for the last six months or so. This are starting to slow down now. We need God to open a door to continue to allow Kristina to work part time.

As always, thank you so much for your prayers and support! Your pray and support is priceless! Thank you SO MUCH!

Nathan, Kristina & Jaylie

Pictures from August: HERE



PS, here is a face book post from earlier in the month of all those not on facebook much:

Life story (warning graphic content). So I get done working at 3ish AM
this morning, hit the couch to try and get a couple hours of sleep
before my wife leaves at 830am to go to a drs apt leaving me to watch
our 9 month old daughter. Well, as life would have it, i was woken up
several times before my wife left me with Jaylie at 830. Doesn't sound
fun so far right... It gets better!

Jaylie was kind enough to allow me to sleep a bit while she slept
until a little after 10 before she decided she needed her diaper
changed. So I get up and take Jaylie down stairs to change her diaper
hoping we can go back to sleep afterwards.

I start to change Jaylie's diaper and find it is completely full of
stinky black stuff. As I carefully juggle Jaylie, the dirty diaper,
the clean diaper and wipes Jaylie decides she needs to poo some more
and so she does, all over the new clean diaper and the changing
station. I think to myself, "crap, that sucks". I then continue to
attempt to clean Jaylie up and minimize her contact with the poo,
Jaylie rewards my efforts my pooping again, yes a third time at this
point. At this moment in time poo is every where EXCEPT the carpet. I
think to myself, "at least she didn't project on to the carpet".

Not more than a moment later while I am still trying to keep Jaylie
out of the poo and successfully change her diaper the unthinkable
happens, Jaylie sends a stream of black projectile poo flying out of
the changing table and on to the floor... Crap... At this point I give
up on trying to keep Jaylie out of the poo because it's every where.

After Jaylie poos on everything in sight, I take Jaylie and stick her
on a towel on the bathroom floor while I get the resolve out and douse
the black poo covered carpet in hopes it will not stain. I then work
for the next 90 minutes cleaning up the poop covered pack-and-play,
poo covered Jaylie and poo covered carpet. These moments in life
remind me why there is a holiday just for fathers and mothers, we
deserve it!

Jaylie - 8 months

It's been awhile since our last post, but in this case no news is good news! Jayile is doing well, she is growing and maturing at a good pace the Dr's are pleased with. Jayile is still not on the charts but growing well. Jayile is 11lbs 13zos and is wearing 0-3 month clothes, up towards the 3month range. Jaylie is doing a bit better with the oral feeding but is still getting most of her food via the gtube. We started Jaylie on solid foods a couple of weeks ago. She's eating very small amounts of first foods but is eating solid foods non-the-less!

Things are going well!

Thank you for your thoughts and prayers!

Here are a couple new pictures from this month:





July Pictures

Jaylie - 7months

We went to Jaylie's 7 month apts yesterday. Jaylie is doing well. She is 9lbs 11 onces and 22 1/4 inches long. Jaylie is getting bigger now. She's holding stuff now and making little squeaking noises! Jaylie is teething a bit now and has been a little more fussy then normal.

I've posted a couple more pictures here: June

As always, thank you for your support and prayer!

Nathan, Kristina and Jaylie

Jaylie - 6 1/2 months

So the 24hr hospital stay turned into 48hrs - we spend half of Memorial Day weekend in the hospital but I am glad to say Jaylie is doing well. The Dr's advise the infection was most-likely a staph infection.

We are all back home now. Jaylie is doing well, feedings are going well and Jaylie is even showing a bit more interest in the bottle and pacifier! Yay!

Being back up at Swedish was bitter sweet. We always receive excellent care and were able to reconnect with many of the nurses and Dr's we have met over our + 4 months time we have spent there at Swedish. It's nice to see familiar faces but a reminder we have been there A LOT. We know the staff, the rooms, the routines and even the menu :). Needless-to-say we are glad to be back home!

People have been asking for more photos so here are a few: Jaylie June

As always, thank you for the prayer and support! You all are amazing!

Nathan, Kristina & Jaylie

Jaylie - 6 months 1 week

We are back at Swedish today. Two days ago, Jaylie had her G tube button replaced here at Swedish. Yesterday and today Jaylie has been fussy during her feeds. She was waking up every couple of hours all though the night. At 230am this morning Jaylie had a 102.5 temperature which remained after 730am when we called the Dr. The surgeon which has performed all of Jaylie's surgeries advised us to bring Jaylie in right away, so here we are. The Dr's have advised Jaylie is fighting an infection of the G tube insertion site so the have Jaylie on an IV and meds over the next 24hrs which means we will be here overnight.

Other than a small infection and hospitalization things are well :0)

Here is a link to a recent picture: HERE

Nathan, Kristina and Jaylie